European Parkinson s Disease Association

Transcription

1 European Parkinson s Disease Association Move for Change Survey Part : Analysis Report Executive Summary... 3 Background... 3 Diagnosis... 3 The Role of Healthcare Professionals... 3 Parkinson s Organisations and Support Groups... 3 Next Steps... 4 Parkinson s Disease Background... 5 About the EPDA and the EPDA Charter... 6 Move for Change Survey: Summary and Objectives... 6 Methodology... 7 The Survey... 7 Analysis Techniques and Assumptions... 7 Possible Causes of Bias... 8 European Findings... 9 Eastern Europe... 4 Bulgaria... 9 Czech Republic Hungary Poland Romania Northern Europe... 4 Denmark Finland Ireland Lithuania Norway Sweden United Kingdom... 72

2 Southern Europe Greece... 8 Israel Italy Malta Slovenia Spain Western Europe Austria... Belgium... 5 France... 9 Germany Luxembourg Netherlands Switzerland Conclusions... 4 Next Steps Increasing Awareness Actions Move for Change Survey: Parts 2 and Appendices Demographic Data Country Listing Questionnaire

3 Executive Summary Background Part of the Move for Change survey was carried out during 200 and aimed to investigate the first two rights laid out in the European Parkinson s Disease Association (EPDA) Charter: Be referred to a doctor with a special interest in Parkinson s disease (Parkinson s) Receive an accurate diagnosis Over 2,000 people with Parkinson s (PWPs) from 37 countries across Europe participated in the survey. These respondents represented a broad range of ages and time living with Parkinson s. Diagnosis The results of the survey indicate that most people with Parkinson s receive their diagnosis within a of seeking assistance and the vast majority within two s. Despite this, some people have to wait much longer to receive a diagnosis, particularly in some countries of Southern Europe. Similarly, most people with Parkinson s are diagnosed after visiting one or two doctors. However, in some cases more than three doctors need to be consulted before a diagnosis is confirmed. Generally, visiting several doctors is linked with slower diagnosis. The results show that in many cases, people were not dealt with in the sympathetic manner they would like when receiving their diagnosis. More sensitivity on the part of the doctor giving this news would be welcomed by PWPs. There is a good deal of information available to patients when they are diagnosed, especially in Northern and Western European countries. However, not all of this information is seen as appropriate or helpful to PWPs. The Role of Healthcare Professionals Throughout Europe, the healthcare professional who plays the greatest role in both diagnosis and care of Parkinson s is the neurologist. Doctors with a special interest in Parkinson s are consulted by PWPs much less than neurologists are. This is especially so in Northern and Western Europe, where Parkinson s specialists play a relatively minor role in the diagnosis and care of Parkinson s. The survey also indicates that the family doctor is routinely involved in the ongoing care of PWPs. Parkinson s Organisations and Support Groups Parkinson s organisations and support groups are available throughout Europe, but are not consistently used. The biggest challenge to these groups is not awareness of their existence, but an understanding of their relevance and the help they can offer to PWPs. The survey shows that those who are members of Parkinson s organisations have a high regard for the information and services that are offered. 3

4 Next Steps The results presented here, together with the findings of Parts 2 and 3 of the Move for Change survey, will provide a significantly enhanced understanding of the way in which Parkinson s is diagnosed and treated in Europe, based on the five key rights laid out in the EPDA Charter. It is hoped that this will assist the EPDA and its partner organisation across Europe to raise awareness of the challenges faced by PWPs and how standards of care can be improved. This report includes a number of proposals that aim to address the issues raised by the survey in relation to the first two rights laid out in the EPDA Charter. These include proposals to improve diagnosis times and the number of doctors consulted, together with a review of Parkinson s information availability and quality. It is also recommended that it would be beneficial to improve awareness of the support on offer for PWPs. In addition, further investigation and work should be carried out into the relative roles of neurologists and Parkinson s specialists for diagnosing and treating PWPs. Particular consideration should be given to the need for additional training of healthcare professionals, together with improved understanding of the needs of PWPs. 4

5 Parkinson s Disease Background Parkinson s disease (Parkinson s) is a progressive condition which occurs as a result of the destruction of the nerve cells which produce the neurotransmitter, dopamine. Due to this lack of dopamine, messages in the brain fail to transmit smoothly to the muscles, resulting in difficulties controlling movement. 2 Parkinson s is the second most common neurological disease after Alzheimer s and its prevalence is increasing as people live longer; the European Parkinson s Disease Association (EPDA) estimates there are more than.2 million people with Parkinson s (PWPs) across Europe today. The mean age of onset is 60 s, although more than in 0 people are being diagnosed with the disease before the age of Parkinson s is predominantly characterised by problems with body movements, known as motor symptoms. 4, 5 However, Parkinson s is also associated with symptoms which are not directly related to movement, known as non-motor symptoms (NMS), which include sleep disturbances, constipation, loss of sense of smell, depression, sexual dysfunction and anxiety. The combination of these symptoms causes a significant burden on the quality of life of PWPs and their carers. 6 Every case of Parkinson s is different and not all PWPs will experience the same symptoms. 7 The effects of the disease range from the physical to the psychological and cross nearly every cultural, social and economic boundary. Although treatment is constantly improving, researchers are yet to find a way to prevent or cure the disease. The economic consequences of Parkinson s include direct costs such as consultations, hospital admissions, tests and investigations and indirect costs such as early retirement, reduced working hours for carers and institutionalisation. 8,9 Chaudhuri KR et al. Lancet Neurol 2006; 5: Jankovic J. J Neurol Neurosurg Psychiatry 2008; 79(4): Tanner CM et al. Etiology of Parkinson s disease. In: Jankovic JJ et al. (2002) Parkinson s Disease and Movement Disorders, LWW. 4 Pankratz ND et al. NCBI Bookshelf Koller WC et al. Neurology 997;49:S Muzerengi S et al. Parkinsonism Relat Disord 2007;3(Suppl 3):S Politis M et al. Mov Disord 200;25(): Lindgren P. Eur J Health Econom 2004;S: Lindgren P et al. Eur J Neurol 2005;2(Suppl ):

6 About the EPDA and the EPDA Charter The EPDA, founded in 992, helps support more than.2 million PWPs and their families across Europe. The EPDA is a non-political, non-religious and non-profit-making umbrella organisation for 45 European Parkinson s patient organisations across 36 countries in Europe, and is the advocate for the rights and needs of PWPs and their families. The mission statement of the EPDA is to ease the lives of people with Parkinson s and their families and carers by promoting a constructive dialogue between science and society, and by encouraging and supporting the development of national Parkinson s organisations. April 997 saw the launch of the EPDA Charter to coincide with the first World Parkinson s Disease Day. The Charter states that people with Parkinson s have the right to: Be referred to a doctor with a special interest in Parkinson s Receive an accurate diagnosis Have access to support services Receive continuous care; and Take part in managing the illness Move for Change Survey: Summary and Objectives This European survey is the first of a three-part survey being carried out by the EPDA over the next 3 s. Its aim is to look at how the ambitions set out in the Charter have been embraced since its launch in 997, and to determine what difference the Charter has made to the overall management of Parkinson s across Europe. Part examines whether the first two points of the Charter are being met across Europe in terms of accurate diagnosis and access to a doctor with a special interest in Parkinson s. It is hoped that the findings from this survey will assist in improving understanding of the level of care that is currently provided to PWPs and their families across Europe. This will enable the EPDA and national Parkinson s organisations to raise awareness amongst policy makers, healthcare professionals and the wider healthcare community regarding where improvements need to be made in the care of Parkinson s. 6

7 Methodology The Survey The full questionnaire that was used to collect the results presented in this report can be found in appendix 3. The survey was targeted at people residing in Europe and clearly mentioned that it should be completed by a PWP, or a family member, a carer, or a health professional on behalf of the person with Parkinson s, and that each person should complete the questionnaire only once. The survey was administered online through the EPDA website and the websites of affiliated national Parkinson s organisations. The survey was launched on 2 April 200 to coincide with World Parkinson s Day 200 and closed six months later on 29 October 200. A total of 2,49 forms were received; out of which 2,068 were analysed. Of the forms that were rejected, 3 were duplicates and the remainder were rejected because most of the questions were not answered. A full breakdown of demographics and other features of the survey sample can be found in appendix, including gender, age, of diagnosis, current country of residence and country of residence at the time of diagnosis. Analysis Techniques and Assumptions It should be noted that throughout this report, where the question relates to diagnosis (or the period shortly after), the results have been broken down by country of residence at the time of diagnosis. For other questions, the data have been analysed based on the respondent s current country of residence. Countries with less than 0 respondents (i.e. less than 0.5% of the total survey sample) have not been analysed on a country level. However, the results from these respondents have been included in the regional and European level analyses. A total of 25 countries have been analysed at the country level, with 2 countries not being analysed. For a full breakdown of which countries did and did not qualify for a country level analysis, please see appendix 2. A total of 6 respondents indicated that at the time of diagnosis they were residing outside Europe (2 in Asia, 2 in the United States of America and 2 in the Rest of the World). The results from these respondents have been excluded from questions which are based on country of origin at the time of diagnosis. A total of 7 respondents did not state their current country of residence. The data for these respondents have been included within the European level analysis only. For clarity, all percentages presented within the text of the report have been rounded to whole numbers and are shown to decimal place within graphs and appropriate tables. 7

8 Possible Causes of Bias It should be noted that whilst countries with less than 0 respondents have not been analysed at the country level, the sample size in some of the other countries that have been analysed is still relatively small. This may make the country level analysis somewhat unreliable. Furthermore, as the percentage of respondents from each country within the European sample does not necessarily correlate to the population for each country, some countries may be over-represented or under-represented within the regional and European level analyses. As this survey was only available online, this also biases the sample to those who have access to the internet. In addition, as the survey was accessed through the EPDA website or affiliated websites, it follows that people completing the survey would necessarily already be aware of the EPDA or a national Parkinson s organisation. This is not necessarily typical of the population of PWPs across Europe as a whole and may bias the sample in terms of awareness of and attitude towards Parkinson s organisations. 8

9 European Findings Demographics In the total survey, 2,068 questionnaires were analysed from PWPs, comprising 55% males and 45% females. Two questionnaires (0%) were from PWPs under 30 s of age, and 06 (5%) were from PWPs aged 80 or over. The most common age group was s (37%). % of PWPs in the survey were diagnosed with Parkinson s before 980 and 39% were diagnosed between 2006 and 200. In total, 69% of PWPs were diagnosed since The European sample contained the following regional contributions (based on current country of residence): Global region Number of forms analysed Percentage of total analysed Eastern Europe 244 2% Northern Europe % Southern Europe % Western Europe % Not stated 7 % Total 2,068 00% Time to diagnosis Two thirds (66%) of PWPs were diagnosed within a and 83% within 2 s. 2% (approximately /8) took more than 2 s to receive a diagnosis of Parkinson s. Time to diagnosis 6.3% 5.9% 3.4% 3.8%.7% 2.5% 66.4% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated A PWP receiving a slow diagnosis is more likely to be middle-aged (50-69 s) and is more likely to have visited multiple doctors (more than three) to achieve this diagnosis. At time of diagnosis, most PWPs (7%) had seen either one or two doctors and in most cases a neurologist was one of these. A third doctor was involved in 4.5% of cases. Western Europe has the highest proportion of PWPs diagnosed within 2 s (at 89%), while Southern Europe has the lowest (72%), suggesting a longer time to diagnosis. 9

10 Method of receiving diagnosis Across Europe generally, the majority of patients (73%) received their diagnosis from a neurologist. A further 2% received the news from a Parkinson s specialist. The percentage of PWPs receiving their diagnosis from a neurologist has risen steadily from 53% before 980, to a high of 77% in Conversely, the percentage of Parkinson s specialists giving a diagnosis has dropped through the 990s from a high of 62% in , to 0% in This may indicate the development of general neurology and the decline of the single-disease specialist. The highest involvement of a Parkinson s specialist is seen in Eastern Europe (25%), with a similar involvement in Southern Europe (9%). Northern Europe sees 0% of diagnoses by a Parkinson s specialist; Western Europe sees 5%. Who gave the diagnosis?.9% 0.6%.2% 7.7% 5.7% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 72.9% The large majority (79%) of PWPs were aware of a Parkinson s specialist in their country, while 20% were not; 7% stated No and 3% did not know of a specialist. The overwhelming majority (97%) of PWPs received their diagnosis in person. Just 2% of PWPs in the survey received their diagnosis by telephone or letter, and only one individual by . In general, most PWPs thought they were kindly dealt with, with 59% giving a positive score. The poorest scores were given when the diagnosis was handled by a neurologist or hospital doctor, and the best scores when dealing with a family doctor. The lowest proportion of positive scores was seen in Southern Europe, but the highest proportion of negative scores was seen in Northern Europe. Eastern and Western Europe were similar. 0

11 Response to diagnosis 20% 6.9% 5% 4.6% 0%.3% 0.9% 8.2% 9.8% 9.4% 5% 5.% 5.3% 3.8% 4.5% 0% Abruptly Kindly Not stated Information available at diagnosis Almost two thirds of PWPs (62%) received only general information following their diagnosis. A very small number (less than %) received no information at all. A further 22% received detailed information, with 4% reporting that they received information on medication. Fewer than 3% received information on support organisations, although 9% received information on a telephone helpline. These rates of information receipt have remained fairly constant since the 980s. Overall, the level of available information was greater in Northern and Western Europe, and lower in Southern and Eastern Europe. Of all those who gave a response to this question, two thirds (66%) found the information given to be either Helpful or Very helpful. The remaining third (34%) found the information to be Of little help. Eastern Europe is the region which expresses greatest satisfaction with the quality of information, and Northern Europe the least. It cannot be determined whether this results from the inherent quality of the information, or from the level of expectation. Experience of diagnosis Opinions about how the diagnosis was given vary, with an overall majority (53%) reporting that it was Good or Very good, while 45% said Poor or Very Poor (2% did not answer). In verbatim comments, over half of respondents reported a negative feeling when receiving their diagnosis. A significant number (around a tenth of negative responses) talked of poor or insensitive communications from the doctor at the time; while one in six referred to lack of suitable information or guidance. A fifth reported a positive response, but mostly referred to the way that the diagnosis was handled by the doctor, rather than a positive feeling about the disease itself. The most

12 common specific reason for having a positive response to diagnosis was that it was a relief to understand the cause of the symptoms (around a tenth of all responses). As with information, Eastern Europe shows the most satisfaction with how the diagnosis was handled. Northern Europeans are the least satisfied, but by only a small margin from Southern and Western Europeans. Follow-up visits Of those answering, nearly half (44%) of PWPs had never seen a doctor with a special interest in Parkinson s during the 2 s after being diagnosed with Parkinson s. 50% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 43.8% 40% 30% 3.3% 33.3% Neurologist 20% 5.4% 8.0% 9.2% Parkinson's Specialist 0% 0% 7.8% 4.3% Monthly 0.3% once a twice a 3 times a 2.% 2.7% 3.2%.2% Once in 8 months Once in 2 s 7.5% Never The majority of PWPs reported contact with a family doctor or neurologist, with a quarter of those responding reporting that they saw a family doctor at least three times a and a third reporting that they saw a neurologist at least three times a. These proportions appear to be broadly independent of time of diagnosis and age, although the general frequency of medical consultation has increased significantly since 980 to the present. The level of involvement of a Parkinson s specialist is at its highest in Eastern and Southern Europe, and noticeably lower in Northern and Western Europe. However, the neurologist predominates as the specialist caring for Parkinson s cases across the whole of Europe. This responsibility is shared to a significant (but varied) extent with the family doctor. Hospital doctors become involved in some countries, but never to a great extent. Specialists in elderly medicine are rarely involved. 2

13 Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 6.8% 5.3% 6.9% 25.%.8% 4.2% 9.9% Hospital Doctor 3.6% 3.0% 2.2% 0.3%.7% 3.5% 55.8% Neurologist 7.8% 5.4% 3.3% 33.3% 2.% 2.7% 7.5% Parkinson s Specialist 4.3% 0.3% 8.0% 9.2%.2% 3.2% 43.8% Geriatrician.0% 2.0% 2.2%.7% 0.2%.5% 9.4% Parkinson s organisations and support groups Of the respondents answering the questionnaire, most (73%) were members of a national Parkinson s organisation, 26% were not members and % did not answer. 2% of respondents stated there was no organisation in their country. Membership of a national organisation was greater in Northern and Western Europe (86% and 89% respectively 2 ). Respondents who were not organisation members were asked to provide reasons. Of the 287 reasons given, the most common (a third) was that they had no information on, or were unaware of, such organisations. A further group (about one in six) considered that it was too soon for them to join, either because their diagnosis was recent, or because they felt no need for that type of support at present. Other reasons cited included the lack of local facilities, travel difficulties, expense and time constraints due to work, etc. Of those that stated they were a member of a national Parkinson s organisation, the vast majority (92%) thought that the information provided by this organisation was either Good or Very good, and a further majority (73%) found the services of these organisations Good or Very good. Southern Europe stands out as being distinctly less satisfied with this information, with lower ratings of 72% for information and 60% for services, although still positive. Two thirds (64%) of respondents reported that they did not use a support group. 26% used a local support group and a further 9% used an online support group, with % using a support group overseas. There is a split between Eastern and Northern Europe, who have a significantly higher proportion of PWPs who use support services, compared to Southern and Western Europe, where a majority do not use these services. This split applies to all forms of support services. It should be noted that these statistics are likely to be biased as a result of the sample methodology and may not accurately reflect the actual proportion of PWPs in Europe that are members of Parkinson s organisations. 2 The extent to which this is influenced by the data collection methodology (association websites) cannot be determined. 3

14 Eastern Europe Demographics Two hundred and forty-four responses were analysed from PWPs in Eastern Europe (2% of the total survey). Of these, 59% were male and 4% were female. The proportion of males was slightly higher than the overall European figure. Ages ranged from (%), to over 80 (7%), with being the most common age range (37%), very similar to the European age distribution. In Eastern Europe, 2 patients (%) were diagnosed before 980, while 80 (33%) were diagnosed between 2006 and 200, with a steady increase in the number of respondents over this time, echoing the general European pattern. The Eastern Europe sample contained the following national contributions: Percentage of total analysed in Eastern Europe Percentage of total analysed in Europe Number of forms Eastern Europe analysed Bulgaria 5% % Czech Republic 97 40% 5% Georgia 2 0% <% Hungary 02 42% 5% Poland 5% % Romania 4 8% % Russia 2 0% <% Slovakia 2 7 3% <% Total % 2% Time to diagnosis In Eastern Europe, just under two thirds (6%) of PWPs received their diagnosis within of consultation, while a further quarter (22%) received a diagnosis in to 2 s. Only a few (5%) PWPs waited more than 5 s for a diagnosis. 3 The overall time taken to diagnosis is longer than in Northern or Western Europe, and shorter than in Southern Europe. This is similar to the average for Europe as a whole. For further details, please see the Demographic Tables in Appendix. 2 Not analysed due to small sample size (less than 0 respondents). 3 Of the remainder, 7% were diagnosed atr 2-3 s, 2% at 3-4 s; the rest did not answer. 4

15 Time to diagnosis 22.% 6.6% 4.5% 2.0% 2.0% 2.0% 60.8% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, almost a third (32%) of PWPs in Eastern Europe had consulted only one doctor about their Parkinson s symptoms, a further third (38%) had seen two doctors and another 2% were diagnosed after seeing three doctors. A significant minority (5%) of PWPs in Eastern Europe had consulted more than three doctors before a diagnosis was given. These observations are very similar to those for Europe in general. Eastern Europe has slightly fewer PWPs who are diagnosed by the time they have seen two doctors. It should be noted that the average for the region is lowered by Poland, which has a strong tendency to consult multiple doctors before rendering a diagnosis. Method of receiving diagnosis Almost two thirds (6%) of Eastern European PWPs received their diagnosis from a neurologist, with a further quarter (25%) receiving the information from a doctor specialising in Parkinson s. Only a small number received the diagnosis from a family doctor (4%), or from a hospital doctor (9%). This shows a significantly higher involvement of specialists than seen in Europe generally. As a region, Eastern Europe has the highest involvement of Parkinson s specialists, and a correspondingly low involvement of family doctors in the diagnostic process. Most of Eastern European PWPs (85%) were aware of a Parkinson s specialist in their country, while only a few answered No (7%) or Don t know (8%). This is the highest specialist awareness amongst the European regions. In Eastern Europe, the vast majority (95%) received their diagnosis in person; very few (%) received it by letter. While this is the lowest in person score in Europe, there is some uncertainty as the region also scored the highest not stated, at 4%. Eastern European PWPs reported positive reactions to the way in which they were dealt with by doctors. Two thirds (65%) gave a positive score, peaking at a rating of 8/0 for kind handling, similar to other regions. The remainder (45%) scored below 5/0. The remainder did not give an answer to this question. 5

16 Response to diagnosis 20% 20.0% 5%.8% 2.7% 3.5%.8% 0% 7.3% 9.4% 5% 3.3% 2.4% 4.9% 2.9% 0% Abruptly Kindly Not stated Eastern Europe is similar to Southern Europe, especially in the level of involvement of neurologists, plus the relatively higher level of involvement of Parkinson s specialists. In this regard, Bulgaria is an outlier, with atypical neurologist involvement. Information available at diagnosis Over half (59%) of PWPs received general information on Parkinson s following diagnosis (the same as in Europe generally). A further quarter (29%) received detailed information and a few (8%) also reported receiving medical information. This is the highest proportion of PWPs receiving detailed information throughout Europe (and consequently the lowest proportion receiving general information). Three quarters (77%) of responders rated the available information as Helpful or Very helpful. This was the highest positive rating of all the European regions. The remaining minority found the information to be Of little help. Experience of diagnosis Eastern European PWPs were the least satisfied regarding how the diagnosis was given. Quite a bit less than half (4%) reported Good or Very good, with the majority (58%) saying Poor or Very poor. This dissatisfaction makes Eastern Europe stand out from the other three regions, who reported scores similar to each other at over 50% positive. This dissatisfaction is not echoed in the verbatim comments given by respondents. These were generally similar to the European situation as a whole. Just over half of respondents reported a negative feeling when receiving their diagnosis and no specific reason for a negative reaction was given. However, a higher proportion than elsewhere (almost a third) reported feeling shocked, devastated, upset or depressed. This proportion is significantly higher than elsewhere in the study. Nearly a third of respondents spoke of a positive experience, of which half were happy or relieved to know what the symptoms were. 6

17 Follow-up visits Almost a third (30%) of Eastern Europeans report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. An equal number reported seeing a Parkinson s specialist at least three times a, and a further quarter (27%) saw a specialist once or twice a. Only a few (9%) saw a specialist monthly during the 2 s following diagnosis. 40% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 37.6% 30% 29.8% 30.3% 20% 0% 9.3% 8.5% 9.4% 8.0% 4.8% 8.6% 2.9% Neurologist Parkinson's Specialist 0% Monthly once a twice a 3 times a 3.0% 3.0% 3.7%.% Once in 8 months Once in 2 s Never Despite this relatively high involvement of Parkinson s specialists, the neurologist remains the most commonly seen doctor in the 2 s following diagnosis of Parkinson s in Eastern Europe. Only a small minority (3%) of PWPs did not see a neurologist. Over a third (38%) saw this doctor at least three times a, with 9% seeing neurologists monthly. Nearly a third (30%) of PWPs also saw their family doctor monthly with regard to Parkinson s. This is a higher frequency overall than in Europe as a whole, and the involvement of Parkinson s specialists in Eastern Europe is the highest of all European regions, although this high level of involvement is also seen in Southern Europe. However, even in these regions, the neurologist predominates as the specialist caring for Parkinson s cases. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 30.4% 8.8% 3.4% 25.8%.4% 3.2% 7.% Hospital Doctor 7.9% 9.0% 9.0% 3.5%.7% 7.3% 5.7% Neurologist 9.3% 9.4% 4.9% 37.6% 3.0% 3.0% 2.9% Parkinson s Specialist 8.5% 8.0% 8.6% 29.8%.% 3.7% 30.3% Geriatrician.7% 2.9% 2.3%.2% 0.0%.2% 90.7% 7

18 Parkinson s organisations and support groups Eastern and Southern Europe had generally far lower rates of membership of national Parkinson s organisations than Northern and Western Europe. In Eastern Europe, over half (56%) of responding PWPs were members of a national association. Around a tenth (9%) of the PWPs in Eastern Europe were unaware of a national Parkinson s organisation. Of those who were not members, the most common reason was that they had had no information concerning such an organisation (in half of the comments). A further fifth cited practical difficulties (distance, time, expense) in attending meetings. Those PWPs who were members of a national organisation rated the information from that organisation very highly. Nearly all (97%) found this information to be Good or Very good. Only very few (3%) felt that it was Poor or Very poor. With regard to how beneficial the organisation s services were, most (85%) said Good or Very good, while a very small group (4%) said Poor or Very poor ; 2% did not answer this question. In Eastern Europe, nearly two thirds (60%) did not use a support group. Of the remaining 40% who did, the majority (28%) used a local support group; 3% used an online group and 3% said they used an overseas group. The remainder did not answer. 8

19 Bulgaria Demographics Eleven responses were analysed from PWPs in Bulgaria (% of the total survey, 5% of Eastern Europe). Of these, 73% were male and 27% were female. The proportion of males was significantly higher than the overall European figure and the highest proportion in the entire survey. Ages ranged from (8%), to (8%), with being the most common age range (46%). This is very similar to the European age distribution. In Bulgaria, 8% of PWPs were diagnosed between 986 and 990, while 75% were diagnosed after 996 (25% in each category: , and ). 7% did not state the of diagnosis. The demographics for Bulgaria are not in line with either the region or Europe as a whole, due to the relatively small sample size. They are, however, not completely anomalous. Time to diagnosis In Bulgaria, most (75%) PWPs received their diagnosis within of consultation. The overall time taken to diagnosis is significantly shorter than the region, and is also as fast as the best region in Europe (Western Europe). 8.3% 0.0% Time to diagnosis 0.0% 8.3% 8.3% 75.0% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, over half (58%) of PWPs in Bulgaria had consulted two doctors about their Parkinson s symptoms; this is the most common situation in Bulgaria. Only one individual each (8%) had consulted one, three, or more than three doctors respectively and the remainder did not answer. The lack of multiple consultations may explain the rapid diagnosis seen above. Method of receiving diagnosis Half of Bulgarian PWPs received their diagnosis from a neurologist. A further third received the information from a doctor specialising in Parkinson s. This echoes the relative importance of the Parkinson s specialist in Eastern Europe. For further details, please see the Demographic Tables in Appendix. 9

20 Who gave the diagnosis? 0.0% 8.3% 0.0% 8.3% 50.0% 33.3% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated All but one Bulgarian PWP were aware of a Parkinson s specialist in their country and the remaining individual did not know. All but one Bulgarian PWP received their diagnosis in person (one individual did not answer this question). Bulgarian PWPs reported mixed findings with regard to how they were given their diagnosis. Just over half (58%) scored 5 or less out of 0, indicating an abrupt manner; a quarter of PWPs scored only/0 for very abruptly. Conversely, a third of PWPs scored 0/0 for very kindly. This clearly indicates significant variability between individual physicians. In this regard, Bulgaria is more like a Southern European country. Response to diagnosis 35% 33.3% 30% 25% 20% 25.0% 25.0% 5% 0% 8.3% 8.3% 5% 0% Abruptly 0.0% 0.0% 0.0% 0.0% 0.0% Kindly 20

21 Information available at diagnosis All but one (92%) PWP received general information on Parkinson s following diagnosis. One received detailed information, one received medical information and one received information regarding a telephone helpline. No individual was left without any information, and some individuals received information in more than one category. This is a very high rate of information availability compared to the European average. Almost two thirds (60%) of those who answered rated the available information as Helpful or Very helpful, while the remaining 40% found it to be Of little help. Experience of diagnosis All Bulgarian PWPs were satisfied with how the diagnosis was given, rating this as Good. In verbatim comments, one PWP spoke of the need for more practical information. Follow-up visits In Bulgaria, all responding PWPs saw a neurologist and a Parkinson s specialist within 2 s of diagnosis. 30% 28.6% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 28.6% 28.6% 25% 25.0% 25.0% 25.0% 20% 5% 0% 2.5% 2.5% 4.2% Neurologist Parkinson's Specialist 5% 0% 0.0% Monthly once a twice a 3 times a 0.0% 0.0% Once in 8 months Once in 2 s 0.0% 0.0% Never 80% of PWPs also saw their family doctor regarding their Parkinson s. These visits were made at least once ly (30% of cases) and many PWPs made these visits more frequently. 88% saw a hospital doctor, most commonly once or twice a. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 30.0% 0.0% 20.0% 20.0% 0.0% 0.0% 20.0% Hospital Doctor 0.0% 25.0% 25.0% 2.5% 0.0% 25.0% 2.5% Neurologist 2.5% 2.5% 25.0% 25.0% 0.0% 25.0% 0.0% Parkinson s Specialist 0.0% 28.6% 4.3% 28.6% 0.0% 28.6% 0.0% Geriatrician 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 00.0% 2

22 This shows that Bulgarian PWPs appear to have multiple doctor contacts during follow-up, and also highlights the importance of the Parkinson s specialist in this country. Parkinson s organisations and support groups Echoing the low membership rate in Eastern Europe, only just over a quarter (27%) of Bulgarian PWPs claim to be members of a national Parkinson s organisation. This is the lowest national membership throughout the survey (equal with Germany). The remaining three quarters (73%) are not members. Only two individuals volunteered reasons for not belonging to a national organisation; one saw no point and one claimed to be unaware of such an organisation. Those PWPs who were members of a national organisation rated the helpfulness of the information from that organisation very highly; a third found the information to be Very good and the remaining two thirds found it to be Good. None of the PWPs in Bulgaria used a support group of any kind. 22

23 Czech Republic Demographics Ninety-seven responses were analysed from PWPs in the Czech Republic (5% of the total survey, 40% of Eastern Europe). Of these, 59% were male and 4% were female. The proportion of males was slightly higher than the overall European figure, but exactly in line with the Eastern European sample. Ages ranged from (8%), to (8%), with being the most common age range (46%). The age distribution is very flat, with a significant peak at s. In the Czech Republic sample, % of PWPs were diagnosed between 980 and % were diagnosed between 2006 and 200. There is a low level of diagnosis before 2000 (<0% in each period), then a rapid rise from 2000 onwards. Time to diagnosis In the Czech Republic, over half (56%) of PWPs received their diagnosis within of consultation. A further quarter (27%) received a diagnosis in to 2 s, while only 5% of PWPs waited more than 5 s for a diagnosis. The great majority (83%) of Czech PWPs are diagnosed within 2 s. This is similar to the best performances in Europe. Time to diagnosis 26.8% 4.% 3.% 5.2%.0% 4.% 55.7% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated Most PWPs (7%) in the Czech Republic were diagnosed after seeing either one or two doctors. When diagnosed, just over a third (37%) of PWPs in the Czech Republic had consulted only one doctor about their Parkinson s symptoms; a further third (34%) had seen two doctors and a further % saw a third doctor. Around one in eight (3%) PWPs in the Czech Republic had consulted more than three doctors before a diagnosis was given. 2 These observations are very similar to those for Eastern Europe and Europe in general. For further details, please see the Demographic Tables in Appendix. 2 The remainder did not answer this question. 23

24 Method of receiving diagnosis Two thirds of Czech Republic PWPs received their diagnosis from a neurologist, with a further 22% receiving the information from a doctor specialising in Parkinson s. Only very few received the diagnosis from a family doctor (4%) or from a hospital doctor (7%). This is very similar to the regional performance and shows a significantly higher involvement of Parkinson s specialists than seen in Europe generally. Who gave the diagnosis? 2.6% 0.0% 4.% 7.2% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 67.0% Almost all Czech PWPs (86%) were aware of a Parkinson s specialist in their country, while 4% answered No and 8% Don t know. This high awareness of specialists is seen throughout Eastern Europe, with the exception of Romania. In the Czech Republic, almost all PWPs (95%) received their diagnosis in person. Very few received this by telephone (%) or letter (%); the remaining 3% did not answer. Czech PWPs reported positive reactions to the way in which they were dealt with by doctors. Almost three quarters (72%) gave a positive score, peaking at a rating of 0/0 (20%) for kindly handling, the highest rating in Eastern Europe. The remaining 2% did not answer. 24

25 Response to diagnosis 20% 9.6% 5% 2.4% 5.5% 6.5% 0% 7.2% 7.2% 8.2% 5%.0% 2.% 5.2% 5.2% 0% Abruptly Kindly Not stated Information available at diagnosis Nearly two thirds (64%) of PWPs received general information on Parkinson s following diagnosis (slightly above the regional rate). A further quarter received detailed information, while very few reported receiving medical information (8%), information on support organisations (8%), or information on telephone helplines (%). Very few (2%) reported receiving no information at all. The great majority of responders (80%) rated the available information as Helpful or Very helpful. This was the highest positive rating within the region (equal with Romania). Experience of diagnosis Czech PWPs were the least satisfied regarding how the diagnosis was given. No one reported Good or Very good ; three quarters stated Poor or Very poor, while the remaining one quarter did not answer. This dissatisfaction makes the Czech Republic stand out, even in a region which generally has a low satisfaction level itself. Reasons for this dissatisfaction appear to be varied, from the comments made. The most common comment describes being upset, depressed, scared or similar (nearly a third of those commenting). A further group (onein eight) described themselves as confused, stunned or disbelieving. Very few (less than one in five) gave positive comments, mostly relief at having a definitive diagnosis, or that things could be worse. Follow-up visits A third of Czech PWPs report that they did not see a doctor with a special interest in Parkinson s in the 2 s following diagnosis. The remaining two thirds reported seeing a Parkinson s specialist at some point in that time, with over half of these (37% of the total) seeing the specialist at least three times a. 25

26 50% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 46.8% 40% 36.8% 32.9% 30% Neurologist 20% 0% 0% 20.3% 5.3% Monthly 2.7% 7.9% once a 4.5%.4% twice a 3 times a 3.8%.3% 0.0%.3% Once in 8 months Once in 2 s 5.% Never Parkinson's Specialist Despite this relatively high involvement of Parkinson s specialists, the neurologist remains the most commonly seen doctor in the 2 s following diagnosis of Parkinson s in the Czech Republic. Almost all of Czech PWPs (95%) saw a neurologist at least once. The most common frequency was three times a (47%). A very high proportion (93%) also saw their family doctor regarding their Parkinson s. This follows the Eastern European pattern of frequent visits to multiple doctors. Monthly 3 Once in Once in Never once a twice a times a 8 months 2 s Family Doctor 23.3% 8.% 22.% 30.2%.2% 8.% 7.0% Hospital Doctor 6.8% 2.3% 9.6% 5.% 2.7% 8.2% 45.2% Neurologist 20.3% 2.7%.4% 46.8% 3.8% 0.0% 5.% Parkinson s Specialist 5.3% 7.9% 4.5% 36.8%.3%.3% 32.9% Geriatrician 0.0% 2.7% 4.% 2.7% 0.0% 2.7% 87.7% Parkinson s organisations and support groups In the Czech Republic, over three quarters (78%) of responding PWPs were members of a national association; the remaining 22% stated No. This is the highest membership level in the region. A variety of reasons were given by those who were not members, the most common being that they had had no information concerning such an organisation (a third). The remaining reasons varied from it s too soon for me to various practical difficulties, as well as there s no point, all with a low frequency. All PWPs who were members of a national organisation rated the information from that organisation very highly. All found this information to be Good or Very good. With This excludes Georgia, which had 00% membership, but only one respondent. 26

27 regard to how beneficial the organisation s services were, almost all (93%) said Good or Very good, while 7% did not answer this question. In the Czech Republic, just under half (44%) of PWPs did not use a support group. Of the remaining majority (56%) who did, most (43% of the total) used a local support group; 6% used an online group and % said they used an overseas group. 27

28 Hungary Demographics One hundred and two responses were analysed from PWPs in Hungary (5% of the total survey, 42% of Eastern Europe). Of these, 56% were male and 44% were female. The proportion of males was in line with the overall European figure, and slightly lower than Eastern Europe as a region. Ages ranged from (3%), to over 80 (8%) was the most common age range (3%), which is very similar to the European age distribution. There were few PWPs with long-standing Parkinson s in Hungary. Two patients (2%) were diagnosed between 986 and % were diagnosed between 2006 and 200, with a second, smaller peak in (28%). Time to diagnosis In Hungary, most PWPs (63%) received their diagnosis within. A further quarter (24%) received a diagnosis in to 2 s. Only very few PWPs (3%) waited more than 5 s for a diagnosis. This is the second fastest time to diagnosis in the region, after Romania % 2.9% 2.9%.0%.9% Time to diagnosis Under - 2 s 2-3 s 24.3% 3-4 s More than 5 s 63.% Don't know Not stated When diagnosed, over a quarter (27%) of PWPs in Hungary had consulted only one doctor about their Parkinson s symptoms, almost half (45%) had seen two doctors and a further 3% saw a third doctor. 4% of PWPs in Hungary had consulted more than three doctors before a diagnosis was given. 3 These observations are very similar to those for Eastern Europe in general. For further details, please see the Demographic Tables in Appendix. 2 Excluding small samples which have not been analysed. 3 The remainder did not answer the question. 28

29 Method of receiving diagnosis Just over half (53%) of Hungarian PWPs received their diagnosis from a neurologist, with a further 29% receiving the information from a doctor specialising in Parkinson s. Only a small minority (6%) received the diagnosis from a family doctor, and % from a hospital doctor. Who gave the diagnosis? 0.0%.0% 5.8% 0.7% 29.% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 53.4% This shows a significantly higher involvement of specialists than is seen in Europe generally, which is typical of Eastern Europe. The majority of Hungarian PWPs (87%) were aware of a Parkinson s specialist in their country, while 0% answered No and 3% Don t know. In Hungary, nearly all (94%) received their diagnosis in person. Only a very small proportion (%) received this by letter, while 5% did not answer. This is typical of results throughout Europe. The majority of Hungarian PWPs reported that they were satisfied with the way they were dealt with when diagnosed. The majority (63%) gave a positive score, peaking at a rating of 0/0 (23%) for kindly handling. 29

30 Response to diagnosis 25% 23.3% 20% 7.5% 5% 0% 6.8% 0.7% 3.6%.7% 5% 3.9% 2.9% 3.9% 3.9%.9% 0% Abruptly Kindly Not stated Information available at diagnosis Half of PWPs received general information on Parkinson s following diagnosis (below both regional and European levels). However, almost half (40%) reported receiving detailed information (significantly above both regional and European levels). Small minorities reported receiving medical information (0%), information on support organisations (2%) and information on telephone helplines (8%). All PWPs reported being given information of some sort. This is a very high level of information distribution, significantly above the regional performance. The helpfulness of this information was rated reasonably well in Hungary. Over two thirds (70%) of responders rated the available information as Helpful or Very helpful. A quarter (23%) found it Of little use. The remaining 7% did not answer. Experience of diagnosis Hungarian PWPs were quite dissatisfied with how the diagnosis was given. Only a small minority (3%) reported Good or Very good, with the majority (87%) saying Poor or Very poor. This is the lowest national rating in the whole of Europe. Of the verbatim comments submitted by Hungarian PWPs, roughly half were clearly negative. Very few were positive and these were largely to do with relief at finding a diagnosis or similar. Follow-up visits Less than a quarter (2%) of Hungarians report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. Over a quarter (26%) reported seeing a Parkinson s specialist at least three times a, and a further quarter (25%) saw a specialist once or twice a. A few (4%) saw a specialist monthly during the 2 s following diagnosis. 30

31 Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 30% 25% 20% 5% 0% 5% 0% 20.5% 4.% Monthly 6.8% 2.4% once a 7.0% 24.7% twice a 28.4% 25.9% 3 times a.% 0.0% Once in 8 months 4.7% 3.4% Once in 2 s 22.7% 28.2% Never Neurologist Parkinson's Specialist Despite this relatively high involvement of Parkinson s specialists, the neurologist remains the most commonly seen doctor in the 2 s following diagnosis of Parkinson s in Hungary, but only by a very slim margin. Almost three quarters of PWPs (73%) saw this doctor at least three times a, with 20% seeing them monthly. A total of 77% of PWPs saw a neurologist, compared to 72% of PWPs seeing a Parkinson s specialist. More than a third (38%) of PWPs also saw their family doctor monthly in regard to Parkinson s. This is a higher frequency than in Europe as a whole and the involvement of Parkinson s specialists is one of the highest throughout Europe. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 38.3% 9.6% 6.4% 20.2%.% 0.0% 24.5% Hospital Doctor 9.% 5.2% 7.8% 0.4% 0.0% 3.9% 63.6% Neurologist 20.5% 6.8% 7.0% 28.4%.% 3.4% 22.7% Parkinson s Specialist 4.% 2.4% 24.7% 25.9% 0.0% 4.7% 28.2% Geriatrician 2.6% 2.6%.3% 0.0% 0.0% 0.0% 93.4% Parkinson s organisations and support groups In Hungary, a third of responding PWPs (34%) were members of a national association. Very few (2%) of the PWPs in Hungary were unaware of a national Parkinson s organisation. Of those who were not members, the most common reason was that they had had no information concerning such an organisation, from around half of those answering. A further quarter cited practical difficulties (distance, time, expense) in attending meetings. The remaining answers gave a range of different comments. Those PWPs who were members of a national organisation rated the information from that organisation very highly; nearly all (9%) found this information to be Good or Very good, while only a few (6%) felt that it was Poor or Very poor. With regard to how 3

32 beneficial the organisation s services were, most (83%) said Good or Very good, while only a few (6%) said Poor or Very poor and the rest (%) did not answer this question. In Hungary, three quarters did not use a support group. For those who did use support groups, most (20%) used a local support group, while a few used an online group (7%) and/or an overseas group (4%). 32

33 Poland Demographics Eleven responses were analysed from PWPs in Poland (% of the total survey, 5% of Eastern Europe). Of these, 54% were male and 46% were female. This gender split is almost identical to the European average, although there are fewer males than in the rest of Eastern Europe. All Polish PWPs in the survey were towards the older end of the age range: (27%), (46%) and 80 and over (27%). This is clearly older than the average of the sample in general. The duration of disease in PWPs in Poland is varied. 20% of PWPs were diagnosed before 980, 0% in each period from and , and 30% in Time to diagnosis In Poland, under a third (30%) of PWPs received their diagnosis within of consultation. This is quite a low figure compared to other countries and the Eastern European level in general. The remaining majority (70%) were all diagnosed after between 2 and 3 s. This somewhat strange distribution most likely results from the relatively small sample size in Poland. 0.0% Time to diagnosis 70.0% 30.0% 0.0% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, less than half (40%) of PWPs in Eastern Europe had consulted only one doctor about their Parkinson s symptoms, 0% had seen two doctors and a further 20% saw a third doctor. Almost a third (30%) of PWPs in Poland had consulted more than three doctors before a diagnosis was given. The proportion of early diagnoses compares well with other countries and the Eastern European diagnosis rates generally. However, the number of PWPs seeing more than three doctors is considerably higher than the remainder of the region. Method of receiving diagnosis Most Polish PWPs (60%) received their diagnosis from a neurologist, while a far smaller group (20%) received the information from a doctor specialising in Parkinson s. Only a few (0%) For further details, please see the Demographic Tables in Appendix. 33

34 received their diagnosis from a hospital doctor. No Polish PWPs received their diagnosis from a family doctor. In this sample of Polish PWPs, the role of the neurologist predominates, although the Parkinson s specialist still has a significant role to play, as is seen in the rest of the Eastern European region. Who gave the diagnosis? 0.0% 0.0% 0.0% 0.0% 20.0% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 60.0% Most Polish PWPs (82%) were aware of a Parkinson s specialist in their country; the remainder (8%) replied Don t know. In Poland, all PWPs received their diagnosis in person. Polish PWPs were evenly split in their reaction to the way in which they were dealt with by doctors, with exactly half giving a positive score (>5/0) and half giving a negative score (<5/0). Response to diagnosis 25% 20% 20.0% 20.0% 20.0% 5% 0% 0.0% 0.0% 0.0% 0.0% 5% 0% Abruptly 0.0% 0.0% 0.0% 0.0% Kindly Not stated 34

35 Information available at diagnosis Half of the PWPs received general information on Parkinson s following diagnosis (slightly below Eastern Europe as a whole). Just under a third (30%) received detailed information and just under a quarter (20%) report receiving information regarding a telephone helpline. All PWPs reported receiving some form of information upon diagnosis. This level of information, although good, is still below the Eastern European level generally. Once again, Polish PWPs were evenly split in their assessment of the information value; half said it was Helpful or Very helpful and half said it was Of little help. Experience of diagnosis Polish PWPs expressed general dissatisfaction with how their diagnosis was handled. Only a third (35%) reported Good or Very good, with two thirds (64%) saying Poor or Very poor. This low level of satisfaction is typical of the Eastern European region. Probably due to the small sample size, only two verbatim comments were submitted to the survey. Both of these were negative; one was unqualified and one related to disbelief in the diagnosis and poor handling by the doctor. Follow-up visits A third of Polish PWPs report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis, while two thirds did see this specialist at some point during the 2 s following diagnosis. 35% 30% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 33.3% 33.3% 25% 22.2% 22.2% 22.2% 22.2% 20% Neurologist 5% 0%.%.%.%.% Parkinson's Specialist 5% 0% 0.0% Monthly once a 0.0% twice a 3 times a Once in 8 months 0.0% 0.0% Once in 2 s Never The neurologist and the family doctor carry the main responsibility for Parkinson s patients in Poland following diagnosis. Equally high proportions saw a neurologist (89%) and a family doctor (90%) during this period. Just under a quarter of PWPs (22%) report seeing a The remaining % did not answer this question. 35

36 neurologist monthly; a further 22% saw the neurologist at least three times a and 22% twice a. Family doctors are consulted monthly (for Parkinson s) by just under a third (30%) of Polish PWPs, and at least once a by a further half of PWPs. The Parkinson s specialist is more prominent in Eastern Europe than elsewhere, and this remains true in Poland. The main carers for this condition are, however, the neurologist and the family doctor. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 30.0% 20.0% 0.0% 20.0% 0.0% 0.0% 0.0% Hospital Doctor.%.%.%.%.% 0.0% 44.4% Neurologist 22.2% 22.2%.% 22.2%.% 0.0%.% Parkinson s Specialist 0.0% 22.2% 0.0% 33.3%.% 0.0% 33.3% Geriatrician.% 0.0% 0.0% 0.0% 0.0% 0.0% 88.9% Parkinson s organisations and support groups In Poland, three quarters (73%) of responding PWPs were members of a national association. The remaining quarter (27%) stated No. Of those who were not members, only one comment was given, which was that they had had no information concerning such an organisation. Those PWPs who were members of a national organisation rated the information from that organisation very highly; the great majority (87%) found this information to be Good or Very good ; the remaining few (3%) felt that it was Poor or Very poor. With regard to how beneficial the organisation s services were, the situation was evenly balanced; a quarter of PWPs said Good or Very good, while a quarter said Poor or Very poor ; half of the PWPs did not answer this question. In Poland, just over half (55%) of PWPs did not use a support group. The remaining PWPs (45%) used a local support group. 36

37 Romania Demographics Fourteen responses were analysed from PWPs in Romania (% of the total survey, 6% of Eastern Europe). Of these, 36% were male and 64% were female. This sample is very low on male participants, but the sample is small. The age range in the Romanian sample was unusually young; 7% were 40-49, 4% were and the remaining 79% were In Romania, all PWPs have been diagnosed within the last 5 s: (39%), (39%) and (23%). This relatively restricted range is most likely due to the relatively small sample size. Time to diagnosis All Romanian PWPs were diagnosed within. When diagnosed, just under half (46%) of PWPs in Romania had consulted only one doctor about their Parkinson s symptoms. Just under a third (3%) of PWPs in Romania had seen two doctors and just under a quarter (23%) had consulted more than three doctors before a diagnosis was given. These observations show that several consultations occur within a relatively short period of time as, despite the fact that a quarter of Romanian PWPs consulted more than three doctors, all diagnoses were nevertheless made within. Method of receiving diagnosis Three quarters (77%) of Romanian PWPs received their diagnosis from a neurologist. Very few received the information from a doctor specialising in Parkinson s (8%) or from a hospital doctor (5%). This shows a significantly lower involvement of Parkinson s specialists than is seen in the rest of the Eastern European region, and much closer to the level of involvement seen in Northern and Western Europe. The family doctor does not appear to get involved in the diagnosis of Parkinson s at all. Who gave the diagnosis? 7.7% 0.0% 5.4% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 76.9% For further details, please see the Demographic Tables in Appendix. 37

38 Only just over half (57%) of Romanian PWPs were aware of a Parkinson s specialist in their country, while a few (7%) answered No and a third (36%) Don t know. This is the lowest specialist awareness amongst the Eastern European region countries. In Romania, almost all PWPs (92%) received their diagnosis in person. One individual (7% of the sample) received this by letter. Romanian PWPs reported very low scores, describing very abrupt dealings with doctors. Most (92%) gave a score of 5/0 or below, with a majority of these (85%) scoring either or 2 out of 0. Only a few (8%) scored above 5, and these all scored 6. Of the countries eligible for analysis, this is by far the lowest score on this parameter. Response to diagnosis 70% 60% 6.5% 50% 40% 30% 20% 0% 0% Abruptly 23.% 0.0% 0.0% 7.7% 7.7% 0.0% 0.0% 0.0% 0.0% 0.0% Kindly Not stated Information available at diagnosis Romania also reports the lowest level of information available at the time of diagnosis, with only three quarters (77%) of PWPs receiving any form of information. Less than two thirds (62%) reported receiving general information on Parkinson s and a further small group (5%) received detailed information. Romania has the lowest rating both in the region and in the entire survey for this information. Such information as was available was nevertheless well received. The large majority of responders (82%) rated the available information as Helpful or Very helpful. The remainer (8%) deemed it Of little help. This was the highest positive rating of all the European regions. Experience of diagnosis Given the above, it is perhaps surprising that almost a third (30%) of Romanian PWPs described the way matters were handled at diagnosis as Good (20%) or Very good (0%). Over half (60%) said Poor (30%) or Very poor (30%). Although perhaps better than anticipated, this still puts Romania in the lower part of the region with regard to satisfaction at diagnosis. 0% did not answer. 38

39 Of the few comments recorded by Romanian PWPs, all but one describe negative reactions to the diagnosis. Comments describe PWPs as being shocked or disappointed, as well as wanting more information. Follow-up visits All Romanian PWPs report seeing a neurologist at some point during the 2 s following diagnosis. Almost a third (29%) report that they have never seen a doctor with a special interest in Parkinson s in this period. Neurologists and Parkinson s specialists are the key players in post-diagnostic care, followed by family doctors (nearly two thirds (63%) seen by each). Neurologists are seen most commonly at least three times a (64%). Parkinson s specialists are seen usually once a (43%). Family doctors are seen three times a (50%), or in some cases monthly (3%). 70% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 63.6% 60% 50% 40% 42.9% Neurologist 30% 20% 0% 0% 9.% 0.0% Monthly 0.0% once a 4.3% 4.3% 9.% twice a 3 times a 9.% 9.% 0.0% 0.0% Once in 8 months Once in 2 s 0.0% 28.6% Never Parkinson's Specialist Despite this relatively high involvement of Parkinson s specialists, the neurologist remains the most commonly seen doctor in the 2 s following diagnosis of Parkinson s in Romania. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 2.5% 0.0% 0.0% 50.0% 0.0% 0.0% 37.5% Hospital Doctor 0.0% 0.0% 0.0% 20.0% 0.0% 20.0% 60.0% Neurologist 9.% 0.0% 9.% 63.6% 9.% 9.% 0.0% Parkinson s Specialist 0.0% 42.9% 4.3% 4.3% 0.0% 0.0% 28.6% Geriatrician 0.0% 20.0% 0.0% 0.0% 0.0% 0.0% 80.0% Parkinson s organisations and support groups In Romania, nearly three quarters (7%) of responding PWPs were members of a national association. The remaining group (29%) stated No. Of those who were not members, only 39

40 two submitted reasons for not being members. One was unaware of such an organisation; one said it was too soon after diagnosis to join. All PWPs who were members of a national organisation rated the information from that organisation very highly. All found this information to be Good (50%) or Very good (50%). With regard to how beneficial the organisation s services were, almost all (90%) said Good (70%) or Very good (20%), while the remaining minority (0%) said Poor or Very poor. In Romania, two thirds (64%) did not use a support group. No one reported using a local support group; a third (36%) used an online group and a small fraction (7%) said they used an overseas group. This is a very high rate of internet use for support by PWPs. 40

41 Northern Europe Demographics Six hundred and eight responses were analysed from PWPs in Northern Europe (29% of the total survey). Of these, 48% were male and 52% were female. This age split is far more in favour of females than in the other European regions, all of which have a male segment of 57-60%. Ages ranged from (%) to over 80 (2%), with being the most common age range (42%). This distribution is very close to the overall European age range, although there are slightly more PWPs in the age range 60-69, as is also seen in the Western Europe region. In Northern Europe, two patients (<%) were diagnosed before 980, while 28 (46%) were diagnosed between 2006 and 200, with a steady increase in the number of respondents over this time, as seen in the rest of Europe. Northern Europe has the highest proportion of recently diagnosed PWPs; a total of 77% of PWPs in Northern Europe have been diagnosed since 2000 (compared with 67% in Southern and Western, and 62% in Eastern Europe). The Northern Europe sample contained the following national contributions: Percentage of total analysed in Northern Europe Percentage of total analysed in Europe Number of forms Northern Europe analysed Denmark 52 9% 3% Finland 75 2% 4% Iceland 2 <% <% Ireland 35 6% 2% Lithuania 2% % Norway 64 % 3% Scotland (UK) 2 2 <% <% Sweden % 3% United Kingdom 96 6% 5% Wales (UK) 2 5 % <% Total % 29% Time to diagnosis In Northern Europe, two thirds (66%) of PWPs received their diagnosis within of consultation and 7% received a diagnosis in -2 s. Therefore the time to diagnosis is slightly shorter than in Europe as a whole, and similar to Eastern Europe. Not analysed due to small sample size (less than 0 respondents). 2 Included in UK analysis. 4

42 Time to diagnosis 7.4% 6.9% 2.8% 4.9%.5% 0.3% 66.2% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, a third (32%) of PWPs in Northern Europe had consulted only one doctor about their Parkinson s symptoms; 40% had seen two doctors and a further 5% saw a third doctor. 2% of PWPs saw more than three doctors before diagnosis. This proportion is the same as seen in the overall survey. Method of receiving diagnosis Four out of five Western European PWPs received their diagnosis from a neurologist. Only one in ten received the diagnosis from a Parkinson s specialist. 4% received their diagnosis from a hospital doctor and a further 6% from their family doctor. This shows a similar focus on neurologists as seen in Western Europe. Northern Europe sees the highest involvement of neurologists, and low involvement of Parkinson s specialists, with the exception of Norway and, to a lesser extent the UK, where Parkinson s specialists have a slightly more prominent role in care. Who gave the diagnosis? 9.5% 0.8% 0.5% 5.6% 4.% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 79.5% 42

43 Most (80%) Northern European PWPs were aware of a Parkinson s specialist in their country, while 4% answered No and 6% Don t know. This is very similar to the European level of awareness. In Northern Europe, nearly all (96%) PWPs received their diagnosis in person, consistent with the rest of Europe. 2% (4 individuals) received their diagnosis by telephone, the highest proportion in Europe. This is a relatively high proportion of telephone contacts, driven by high telephone contact rates in Norway, Sweden and, to a lesser degree, the UK. Northern European PWPs reported slightly less positive reactions to the way in which they were dealt with by doctors, with more individuals giving a negative score (<5/0) than in Europe generally. However, the overall reaction was still positive, with a majority (58%) giving a positive score. Despite this, Northern Europe has the highest negative score in the survey (42% below 5/0). Response to diagnosis 20% 8.9% 5% 3.5% 3.5% 0%.0% 6.% 7.4% 6.4% 9.2% 9.9% 5% 3.9% 0% Abruptly Kindly 0.3% Not stated Information available at diagnosis Two thirds (65%) of PWPs in Northern Europe received general information on Parkinson s following diagnosis (the highest in Europe). A further 6% reported receiving detailed information (the lowest in Europe). Northern European PWPs reported receiving the highest level of Medical information (9%) and also the highest level of information on telephone helplines (23%). Overall, this level of information is the same as seen in Western Europe, and is significantly higher than the level pertaining in both the Eastern and Southern European regions. Northern Europeans were more critical in their judgement of the helpfulness of information supplied, giving more Good (4%) scores rather than Very good (8%). Overall satisfaction was lower than in the rest of Europe, with 4% finding the information Of little help (compared to 34% overall). Despite giving out the most information, Both Northern This may reflect rural access effects, but there is no evidence to support this. 43

44 and Western Europe have similar low scores in terms of the satisfaction with this information. This may be a function of either quality or expectation. Experience of diagnosis Northern European PWPs were the most satisfied with how the diagnosis was handled by their doctors. Over half (57%) rated this as Good or Very good. The Northern European region has the best overall performance, but the countries show a very mixed pattern within this. While most give a high score on the positive side, Denmark and Sweden return some of the lowest scores in the survey. Just under half of PWPs who recorded comments gave a negative response. A quarter of these specified a lack of suitable information as the cause of their dissatisfaction. Over a third reported a positive experience, of which a third found the diagnosis as either a confirmation of what they already suspected or a long-awaited, definitive label to their problems. Follow-up visits Over half (54%) of Northern Europeans report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. This figure is similar to Western Europe. 60% 50% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 54.4% 40% 38.6% Neurologist 30% 20% 25.3% 5.5% 7.7% 8.0% Parkinson's Specialist 0% 0% 2.9%.4% Monthly once a twice a 7.2% 3 times a 2.9%.% Once in 8 months 4.2% 2.8% Once in 2 s 8.2% Never In Northern Europe, the most commonly consulted doctor was the neurologist, although the frequency of consultation was lower than in other regions. In total, 92% of PWPs saw a neurologist at some point during the 2 s following diagnosis. The most common frequency of these visits was at least twice ly (39%), with a further 25% visiting at least once a. Only 8% saw the neurologist three times a. The next most frequently seen doctor was the family doctor, who saw over two thirds (69%) of PWPs at some point. The most common frequency was three times a (20%), followed by once a (8%). 44

45 Overall, the frequency of medical visits is lower in Northern Europe generally. The neurologist dominates Parkinson s care in Northern Europe. This responsibility is shared with the family doctor, but to a variable extent. Family doctor involvement is lower in Denmark, Sweden and Finland. The involvement of a Parkinson s specialist varies throughout the region. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 7.6% 8.3% 5.3% 9.5% 2.4% 5.6% 3.3% Hospital Doctor 0.5% 2.2% 2.2% 6.5% 2.2% 2.2% 64.2% Neurologist 2.9% 25.3% 38.6% 8.0% 2.9% 4.2% 8.2% Parkinson s Specialist.4% 5.5% 7.7% 7.2%.% 2.8% 54.4% Geriatrician 0.6%.2% 3.3% 0.6% 0.3%.2% 92.7% Parkinson s organisations and support groups In Northern Europe, most (86%) PWPs in the survey stated that they were members of a national Parkinson s organisation, very close to the highest scoring region in the survey (Western Europe, with 89%). 4% claimed not to be members. Northern Europe and Western Europe have membership proportions double those of Eastern and Southern Europe. Of the 4% who were not members of a national organisation, almost a third said it was too soon for them (recent diagnosis) and one in ten were not aware of such an organisation. Those who were members of a national organisation found the information provided to be helpful. The vast majority (94%) rated the helpfulness of information as Good or Very good. Only 5% felt that it was Poor or Very poor. Similarly, three quarters (73%) of respondents found the services of the organisation to be Good or Very good. 4% said Poor or Very poor. Almost a quarter (23%) did not answer this question. Services were rated lower than information across the region. No one in Northern Europe thought there was no patient organisation in their country. In Northern Europe, over half (55%) did not use a support group. Of the remaining 45% who did, the vast majority (37% of all PWPs) used a local support group; 4% used an online group and % said they used an overseas group. In terms of support groups, Northern Europe has similar results to Eastern Europe, with higher use of local support groups. Northern and Eastern regions are distinct from Western and Southern, which have similar results to each other. This may be an artefact of sample selection (association websites). 45

46 Denmark Demographics Fifty-two responses were analysed from PWPs in Denmark (3% of the total survey, 9% of Northern Europe). Of these, 40% were male and 60% were female. The proportion of males was lower than the overall European figure, but only slightly below the Northern European sample. Ages ranged from (0%), to over 80 (4%) was the most common age range (39%), although was also well represented (35%). In the Danish sample, 2% of PWPs were diagnosed between 98 and 985 and 46% were diagnosed between 2006 and 200. The majority of PWPs in Denmark (77%) were diagnosed since Time to diagnosis In Denmark, two thirds of PWPs received their diagnosis within of consultation; a far smaller group (5%) received a diagnosis in to 2 s. Only 0% of PWPs waited more than 5 s for a diagnosis. The great majority of Danish PWPs (82%) are diagnosed within 2 s, very similar to the Northern European figure. Time to diagnosis 9.6% 3.8% 0.0% 5.4%.9%.9% 67.3% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, just under a third (29%) of PWPs in Denmark had consulted only one doctor about their Parkinson s symptoms. Nearly half (46%) had seen two doctors and a further 4% saw a third doctor. A small minority (0%) of PWPs in Denmark had consulted more than three doctors before a diagnosis was given. These observations are generally similar to those for the rest of Northern Europe. 2 Method of receiving diagnosis Most (79%) Danish PWPs received their diagnosis from a neurologist, with only a few (8%) receiving the information from a doctor specialising in Parkinson s. Only 8% received the diagnosis from a family doctor, and 4% from a hospital doctor. The pre-eminence of neurologists is typical of the European picture, especially in Northern and Western Europe. For further details, please see the Demographic Tables in Appendix. 2 The remainder did not answer. 46

47 Who gave the diagnosis? 7.7% 0.0%.9% 7.7% 3.8% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 78.8% A huge majority (86%) of Danish PWPs were aware of a Parkinson s specialist in their country, while 4% answered No and 0% Don t know. This awareness is slightly higher than that seen in Northern Europe regionally. In Denmark, nearly all of PWPs (94%) received their diagnosis in person. 2% each received this by telephone or letter (2% not stated). Danish PWPs had a slightly negative overall reaction to the way in which they were dealt with by doctors at the time of diagnosis. Slightly over half (58%) gave a negative score, this score being fairly evenly distributed across the individual scores. A minority (40%) responded positively, with a peak at 8/0. This is the most negative reaction within the region, with the exception of Lithuania. Response to diagnosis 25% 23.% 20% 5% 3.5% 3.5% 3.5%.5% 0% 5.8% 7.7% 5.8% 5%.9%.9%.9% 0% Abruptly Kindly Not stated The remaining 2% did not answer. 47

48 Information available at diagnosis All Danish PWPs received some form of information when diagnosed. Most (83%) PWPs received general information on Parkinson s following diagnosis. Only a few (8%) received detailed information, while a third of the PWPs report receiving medical information; approximately one in eight (2%) received information on telephone helplines. This is the second highest in the region (marginally behind Finland) for information availability. Three quarters (73%) of responders rated this available information as Helpful or Very helpful. The remaining quarter (27%) found the information Of little help. This was the highest positive rating within the region and the second highest score (after Austria) throughout the survey. Experience of diagnosis Danish PWPs were generally dissatisfied with how the diagnosis was given. A third (3%) reported Good or Very good, while two thirds (66%) stated Poor or Very poor (3% did not answer). This dissatisfaction puts Denmark in the lower part of the region, with Sweden. Half of the verbatim comments received were negative. An eighth were positive, the remainder being neither positive nor negative. Negative comments referred to being stunned, shocked or devastated by the diagnosis. The positive comments which gave specific details referred to PWPs being relieved to find a definitive diagnosis for their ailments. Follow-up visits In Denmark, the neurologist dominates follow-up care for Parkinson s patients. Almost all (98%) consulted a neurologist at some point during the 2 s following diagnosis. Just under half (42%) saw a specialist in Parkinson s. More than half of Danish PWPs (58%) report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 57.7% 50% 42.5% 40% 35.0% Neurologist 30% 20% 9.2% 5.4% Parkinson's Specialist 0% 0% 0.0% 0.0% Monthly 2.5% 3.8% once a twice a 3 times a 5.0% 0.0% Once in 8 months 2.5% 3.8% 2.5% Once in 2 s Never 48

49 A neurologist is seen most commonly three times a (43%) or twice a (35%). A Parkinson s specialist is normally consulted twice a (9%), or three times a (5%). Hospital doctors were visited by just under half of Danish PWPs (48%), most commonly twice a (30%). Family doctors were seen by two thirds (65%) of Danish PWPs, most commonly either three times a (22%) or twice a (22%). The neurologist forms the heart of the Parkinson s care process, with Parkinson s specialists coming third to unspecified hospital doctors. This is similar to the Northern European region generally. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 8.% 3.5% 2.6% 2.6% 0.0% 0.0% 35.% Hospital Doctor 0.0% 3.0% 30.3% 2.% 3.0% 0.0% 5.5% Neurologist 0.0% 2.5% 35.0% 42.5% 5.0% 2.5% 2.5% Parkinson s Specialist 0.0% 3.8% 9.2% 5.4% 0.0% 3.8% 57.7% Geriatrician 8.0% 0.0% 0.0% 0.0% 0.0% 0.0% 92.0% Parkinson s organisations and support groups In Denmark, almost all (96%) of responding PWPs were members of a national association. The remaining fraction (4%) stated No. Only one comment was offered for not being a member, which was that this particular PWP had not considered this yet. Nearly all PWPs who were members of a national organisation rated the information from that organisation very highly. Almost all (98%) found this information to be Good or Very good ; only a tiny minority (2%) found the information Of little help. This high rating was better than Northern Europe generally, although the region was positive overall. With regard to how beneficial the organisation s services were, the great majority (80%) said Good or Very good. Very few (6%) found the services to be Poor or Very poor (4% did not answer this question). This was better than the regional score. In Denmark, over half (58%) did not use a support group. A third (34%) used a local support group; a few (8%) used an online group. No one said they used an overseas group. 49

50 Finland Demographics Seventy-five responses were analysed from PWPs in Finland (2% of the total survey, 4% of Northern Europe). Of these, 44% were male and 56% were female. The proportion of males was lower than the overall European figure, but only slightly below the Northern European sample. Ages ranged from (%), to over 80 (%) was the most common age range (44%), although was also well represented (32%). In the Finnish sample, % of PWPs were diagnosed before 980 and a further % were diagnosed between 986 and % were diagnosed between 2006 and 200. The majority of PWPs in Finland (85%) were diagnosed since This is typical of Northern Europe, where the sample contained significantly more recently diagnosed PWPs. Time to diagnosis In Finland, almost two thirds (6%) of PWPs received their diagnosis within of consultation. A smaller group (5%) received a diagnosis in to 2 s, while just 4% of PWPs waited more than 5 s for a diagnosis. Three quarters (76%) of Finnish PWPs are diagnosed within 2 s, which is slightly fewer than in Northern Europe generally. Time to diagnosis 9.5% 4.%.4% 0.0% 9.5% 4.9% 60.8% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, nearly a third (3%) of PWPs in Finland had consulted only one doctor about their Parkinson s symptoms. The largest group (4%) had seen two doctors and a further, smaller group (3%) saw a third doctor. 5% of PWPs in Finland had consulted more than three doctors before a diagnosis was given. These observations are generally similar to those for the rest of Northern Europe. Method of receiving diagnosis Most Finnish PWPs (88%) received their diagnosis from a neurologist, with only very few (5%) receiving the information from a doctor specialising in Parkinson s. Only % received the For further details, please see the Demographic Tables in Appendix. 50

51 diagnosis from a family doctor and 4% from a hospital doctor. This is the highest rate of neurologist diagnosis in the region, with the exception of Lithuania. The pre-eminence of neurologists is typical of the European picture, especially in Northern and Western Europe. Who gave the diagnosis?.4% 0.0% 5.4%.4% 4.% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 87.8% Two thirds of Finnish PWPs were aware of a Parkinson s specialist in their country, while only a few (7%) answered No and a quarter of the PWPs (27%) said Don t know. This awareness is quite low for Northern Europe. In Finland, almost all (97%) of PWPs received their diagnosis in person. Very few (.5% each) received this by telephone or letter. Finnish PWPs had a very slightly positive overall reaction to the way in which they were dealt with by doctors at the time of diagnosis. Very slightly more than half (5%) gave a positive reaction, with a peak at 9/0 (9%) indicating a kindly manner. The remainder (49%) gave a negative score, this score being fairly evenly distributed across the individual scores, but with peaks at 5/0 (9%) and /0 (2%). This equivocal score was also seen in Ireland and Norway (within Northern Europe). Response to diagnosis 20% 8.9% 8.9% 5% 2.2% 3.5% 0% 8.% 8.% 8.% 5% 4.% 5.4% 2.7% 0% Not stated 0.0% 5

52 Information available at diagnosis All Finnish PWPs received some form of information when diagnosed. Over three quarters (78%) of PWPs received general information on Parkinson s following diagnosis. A further fifth (9%) received detailed information, while a quarter (27%) report receiving medical information. Just 2% received information on support organisations and 8% received information on telephone helplines. Attitudes to the value of information available in Finland were somewhat mixed; just over half (53%) of responders rated this available information as Helpful or Very helpful, but a sizeable minority (45%) found the information Of little help. Experience of diagnosis Finnish PWPs were generally satisfied with how the diagnosis was given; most (83%) reported Good or Very good, while the remaining 7% stated Poor or Very poor. This was the highest satisfaction score in the region. Just over half of the verbatim comments received were negative, the most common referring to being stunned/confused, or shocked/devastated. About a quarter were positive, mostly referring to the relief felt at finding a definitive diagnosis. Follow-up visits As in the rest of Northern Europe, the neurologist dominates follow-up care for Parkinson s patients in Finland. Almost all (96%) have consulted a neurologist at some point during the 2 s following diagnosis. Half (53%) saw a specialist in Parkinson s and just under half (47%) reported that they had never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 50% 42.6% 46.9% 40% 33.3% 30% 24.5% Neurologist 20% 6.3% Parkinson's Specialist 0% 0% 3.7% 0.0% Monthly once a twice a.% 8.2% 3 times a 5.6% 2.0% 2.0% 0.0% Once in 8 months Once in 2 s 3.7% Never A neurologist is seen most commonly once a (43%), or twice a (33%). A Parkinson s specialist is normally consulted twice a (24%), or three times a (6%). The remainder did not answer this question. 52

53 Hospital doctors were visited by a third of Finnish PWPs (35%), most commonly once a (9%). Family doctors were seen by two thirds of Finnish PWPs (66%), most commonly once a (22%) or twice a (9%). Overall, the rate of consultation is significantly lower in Finland, across all specialties. The neurologist forms the heart of the Parkinson s care process, with Parkinson s specialists coming third to family doctors. This predominance of neurologists is seen throughout the Northern European region generally. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor.7% 22.4% 9.0% 8.6%.7% 2.% 34.5% Hospital Doctor.9% 9.2% 7.7%.9%.9%.9% 65.4% Neurologist 3.7% 42.6% 33.3%.% 0.0% 5.6% 3.7% Parkinson s Specialist 0.0% 6.3% 24.5% 8.2% 2.0% 2.0% 46.9% Geriatrician 0.0% 2.2% 0.0% 0.0% 0.0% 0.0% 97.8% Parkinson s organisations and support groups In Finland, over three quarters (79%) of responding PWPs were members of a national association. The remaining 2% stated No. A range of comments was offered to explain why membership of such an organisation was not taken up and the subject of these comments varied considerably. The most common was no point (a quarter of comments), followed by no information about the organisation (about a sixth) and too soon after my diagnosis (also a sixth). The vast majority of PWPs who were members of a national organisation rated the information from that organisation very highly. 9% found this information to be Good or Very good and 9% found the information Of little help. This high rating is characteristic of Northern Europe generally. Organisation services are routinely rated lower than the value of information. Finland was no exception, where three quarters (76%) said Good or Very good. A tenth of this number (7%) found the services to be Poor or Very poor (7% did not answer this question). In Finland, almost half (47%) did not use a support group. Nearly half (44%) used a local support group and a sixth (7%) used an online group. No one said they used an overseas group. 53

54 Ireland Demographics Thirty-five responses were analysed from PWPs in Ireland (2% of the total survey, 6% of Northern Europe). Of these, 50% were male and 50% were female. This was the only country in the survey to have an exact 50/50 gender split, with fewer males than in the survey generally. Ages ranged from (9%), to 80 and over (3%) was the most common age range (49%). This peak is younger than most countries and regions, where the peak occurs at s. 2 In the Irish sample, 3% of PWPs were diagnosed between 98 and 985 and 3% between 99 and % were diagnosed between 2006 and 200. This is the second highest proportion in this age range, after Germany (60%). 2 Time to diagnosis In Ireland, most (6%) PWPs received their diagnosis within of consultation; a smaller group (5%) received a diagnosis in to 2 s. 0% of PWPs waited more than 5 s for a diagnosis. The great majority of Irish PWPs (8%) are diagnosed within 2 s, very similar to the Northern European figure. 3.2% 0.0% 0.0% 3.2% Time to diagnosis 9.4% 2.9% 6.3% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, around a quarter (23%) of PWPs in Ireland had consulted only one doctor about their Parkinson s symptoms. Half (52%) had seen two doctors and a further 0% saw a third doctor. 3% of PWPs in Ireland had consulted more than three doctors before a diagnosis was given. 3 These observations are generally similar to those for the rest of Northern Europe. Except Croatia, which also had a split, but with only two respondents. 2 For further details, please see Demographic Tables in Appendix. 3 The remainder did not answer. 54

55 Method of receiving diagnosis Three quarters (74%) of Irish PWPs received their diagnosis from a neurologist, with only a very few (3%) receiving the information from a doctor specialising in Parkinson s. Only one in six (6%) received the diagnosis from a family doctor and just 3% from a hospital doctor (the remainder did not answer). This is very similar to the regional performance, although the level of involvement of both neurologist and Parkinson s specialist are lower than other Northern European countries. The pre-eminence of neurologists is nevertheless typical of the European picture, especially in Northern and Western Europe. Who gave the diagnosis? 0.0% 3.2% 3.2% 6.% 3.2% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 74.2% Only half (49%) of Irish PWPs were aware of a Parkinson s specialist in their country, while % answered No and 40% Don t know. This is by far the lowest awareness rating in the region and the second lowest in the survey (to Germany with 36%). In Ireland, all PWPs who answered the question received their diagnosis in person. Irish PWPs had a slightly positive overall reaction to the way in which they were dealt with by doctors at the time of diagnosis. Just over half (52%) responded positively, with a peak at 0/0 (26%) indicating a kindly manner. Just under half (48%) gave a negative score, this score being fairly evenly distributed across the individual scores. 55

56 Response to diagnosis 30% 25% 25.8% 20% 9.4% 5% 2.9% 2.9% 2.9% 0% 6.5% 5% 3.2% 3.2% 3.2% 0% 0.0% Abruptly Kindly 0.0% Not stated Information available at diagnosis Ireland is the only country in Northern Europe where not all PWPs received some form of information upon diagnosis, although only a few (3%) claim they received no information. Over half (6%) received general information on Parkinson s following diagnosis and a further 6% received detailed information. One in five reported receiving medical information and 6% reported receiving information about support organisations, with a quarter (23%) receiving information on telephone helplines. The majority (60%) of Irish responders rated this available information as Helpful or Very helpful. Half this number (30%) found the information Of little help (0% did not answer). This placed Ireland in the top three of the region for approval ratings on this information. Experience of diagnosis Irish PWPs were generally satisfied with how the diagnosis was given. The great majority (82%) reported Good or Very good, while less than a fifth of this number (5%) stated Poor or Very poor (the remainder did not answer). This satisfaction rating puts Ireland second (after Finland) in the region. The relatively few verbatim comments were divided between negative, neutral and positive. The positive comments were mostly centred around the thoughtful manner in which giving diagnosis was handled; a thoughtful attitude here was much appreciated by the respondents. Follow-up visits In Ireland, the neurologist dominates follow-up care for Parkinson s patients. Nearly all (92%) have consulted a neurologist at some point during the 2 s following diagnosis. Less than a third (30%) saw a specialist in Parkinson s, meaning 70% of Irish PWPs report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. 56

57 70% 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 70.0% 50% 40% Neurologist 30% 20% 0% 0% 4.2% 5.0% 5.0% Monthly 29.2% 29.2% 29.2% once a 0.0% twice a 5.0% 5.0% 0.0% 0.0% 0.0% 3 times a Once in 8 months Once in 2 s 8.3% Never Parkinson's Specialist A neurologist is seen most commonly either once, twice or three times a (each with 9%). A Parkinson s specialist, when consulted, is most commonly seen twice a (0%), or three times a (5%). Hospital doctors were visited by just over half (54%) of Irish PWPs, most commonly once or twice a (7% each). Family doctors play a significant role in ongoing Parkinson s therapy in Ireland. They were seen by the large majority (89%) of Irish PWPs, most commonly three times a (32%) or monthly (32%). The neurologist forms the heart of the Parkinson s care process, but the family doctor also plays a major role in Parkinson s care in Ireland. This level of involvement of the family doctor is second only to Norway in Northern Europe. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 32.% 4.3% 0.7% 32.% 0.0% 0.0% 0.7% Hospital Doctor 4.2% 6.7% 6.7% 8.3% 4.2% 4.2% 45.8% Neurologist 4.2% 29.2% 29.2% 29.2% 0.0% 0.0% 8.3% Parkinson s Specialist 5.0% 5.0% 0.0% 5.0% 5.0% 0.0% 70.0% Geriatrician 0.0% 0.0% 0.0% 0.0% 0.0% 5.6% 94.4% Parkinson s organisations and support groups In Ireland, over two thirds (69%) of responding PWPs were members of a national association. Just over a quarter (29%) stated No (the remainder did not answer). Of the comments that were offered, more than half said it was too soon after diagnosis to consider joining an organisation. A large majority (87%) found information from that organisation to be Good or Very good ; only a small group (3%) found the information Of little help. This high rating was better than Northern Europe generally, although the region was positive overall. 57

58 With regard to how beneficial the organisation s services were, around half (46%) said Good or Very good, while a quarter found the services to be Poor or Very poor (29% did not answer this question). This was the lowest score in the region. In Ireland, two thirds (66%) did not use a support group. This was the highest proportion in Northern Europe. A quarter (25%) used a local support group, 4% used an online group and 6% said they used an overseas group. 58

59 Lithuania Demographics Eleven responses were analysed from PWPs in Lithuania (% of the total survey, 2% of Northern Europe). Of these, 27% were male and 73% were female. The highly skewed gender split cannot be commented upon due to the very small sample size. Lithuanian age ranges fell into a relatively narrow band from (46%), to (36%). A significant dip occurred in the range (8%). In the Lithuanian sample, 8% of PWPs were diagnosed between 986 and 990 and 46% were diagnosed between 2006 and 200. Time to diagnosis In Lithuania, almost two thirds (64%) of PWPs received their diagnosis within of consultation and a quarter (27%) received a diagnosis in to 2 s. No one reported waiting more than 2 s for a diagnosis. This gives Lithuania the quickest diagnosis time of all analysed countries in Northern Europe. 0.0% 9.% 0.0% Time to diagnosis 27.3% 63.6% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, nearly half (46%) of PWPs in Lithuania had consulted only one doctor about their Parkinson s symptoms. 9% had seen two doctors and a further 8% saw a third doctor. Over a quarter (27%) of PWPs in Lithuania had consulted more than three doctors before a diagnosis was given. Lithuanian PWPs tend to see the highest number of doctors of all analysed countries in Northern Europe. Conversely, Lithuania also has the second highest proportion of PWPs diagnosed after consulting only one doctor in the region (after the United Kingdom). Method of receiving diagnosis Almost all (9%) Lithuanian PWPs received their diagnosis from a neurologist, with the remaining 9% receiving the diagnosis from a hospital doctor. Family doctors and Parkinson s specialists were not involved in the diagnosis of Parkinson s within this sample. For further details, please see the Demographic Tables in Appendix. 59

60 Who gave the diagnosis? 0.0% 9.% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 90.9% Almost all (9%) of Lithuanian PWPs claimed to be aware of a Parkinson s specialist in their country, while the remaining few (9%) answered No. However, these specialists do play a role in post-diagnostic care, as is shown in the follow-up visits analysis below. In the Lithuanian sample, all PWPs received their diagnosis in person. Lithuanian PWPs had a noticeably negative overall reaction to the way in which they were dealt with by doctors at the time of diagnosis. Three quarters (73%) gave a negative score, this score peaking at 5/5 (36%). One quarter (27%) responded positively, with scores spread evenly across the positive range. This was the most negative reaction in the region. Response to diagnosis 40% 36.4% 30% 20% 8.2% 0% 9.% 9.% 9.% 9.% 9.% 0% Abruptly 0.0% 0.0% 0.0% Kindly 0.0% Not stated Information available at diagnosis All Lithuanian PWPs received some form of information when diagnosed. A quarter (27%) of PWPs received general information on Parkinson s following diagnosis. A further 9% received detailed information, while 9% report receiving medical information; over half 60

61 (54%) received information on telephone helplines. The rate at which helpline advice is given is the highest in the survey. While a quarter (27%) of responders rated this available information as Helpful or Very helpful, the vast majority (73%) found the information Of little help. This was the lowest rating of all countries analysed in the entire survey. Experience of diagnosis Lithuanian PWPs were generally satisfied with how the diagnosis was given. Three quarters (77%) reported Good or Very good, while the remaining quarter (23%) stated Poor or Very poor. Although not the highest, this rating is higher than the regional average. Very few comments were left by Lithuanian PWPs and all that were recorded were negative. The poor performance of the doctor when giving the diagnosis was the most common topic (found in two comments). Follow-up visits In Lithuania, the neurologist dominates follow-up care for Parkinson s patients. All Lithuanian PWPs have consulted a neurologist at some point during the 2 s following diagnosis. Just less than two thirds (60%) also saw a specialist in Parkinson s. Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 50% 40% 42.9% 40.0% 42.9% 40.0% 30% Neurologist 20% 4.3% 20.0% Parkinson's Specialist 0% 0% 0.0% Monthly 0.0% once a 0.0% twice a 3 times a 0.0% 0.0% 0.0% 0.0% 0.0% Once in 8 months Once in 2 s Never A neurologist was most commonly seen monthly (43%), or three times a (43%). A Parkinson s specialist was most commonly consulted once a (40%), or three times a (20%). Hospital doctors, when consulted at all, were visited by one in six (7%) of Lithuanian PWPs twice a. Family doctors were seen by most (88%) of Lithuanian PWPs, most commonly monthly (38%), or three times a (25%). Based on the responses to this survey, the neurologist forms the heart of the Parkinson s care process in Lithuania. Parkinson s specialists assist in this for some 60% of patients and family doctors have a major role to play as well. 6

62 Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 37.5% 0.0% 0.0% 25.0% 2.5% 2.5% 2.5% Hospital Doctor 0.0% 6.7% 0.0% 0.0% 0.0% 0.0% 83.3% Neurologist 42.9% 0.0% 4.3% 42.9% 0.0% 0.0% 0.0% Parkinson s Specialist 0.0% 40.0% 0.0% 20.0% 0.0% 0.0% 40.0% Geriatrician 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 00.0% Parkinson s organisations and support groups In Lithuania, two thirds (64%) of responding PWPs were members of a national association. The remaining third (36%) stated No. This was the lowest level of participation in Northern Europe. Two comments were submitted in the survey for not joining an organisation; one had no information, one had no time due to work. All PWPs who were members of a national organisation rated the information from that organisation very highly. All found this information to be Good (57%) or Very good (43%). This was the highest score of all analysed countries in the region. All the Lithuanian PWPs who answered also found the organisation s service to be useful. All who answered this question said Good or Very good. 29% did not answer this question. This was better than the regional score. In Lithuania, a third (36%) did not use a support group. Two thirds (64%) used a local support group; one individual used an online group; and one individual used an overseas group. This is the highest use of local support groups in the survey. 62

63 Norway Demographics Sixty-four responses were analysed from PWPs in Norway (3% of the total survey, % of Northern Europe). Of these, 55% were male and 45% were female. The proportion of males was higher than the Northern European sample, but the same as the overall European figure. Ages ranged from (3%), to (2%) was the most common age range (52%). In the Norwegian sample, % of PWPs were diagnosed between 986 and % were diagnosed between 2006 and 200. The majority of PWPs in Norway (75%) were diagnosed since The Norwegian sample is therefore slightly younger, and was diagnosed slightly more recently than the overall sample. Time to diagnosis In Norway, almost half (49%) of PWPs received their diagnosis within of consultation. A further quarter (25%) received a diagnosis in to 2 s. 9% of PWPs waited more than 5 s for a diagnosis. Three quarters (74%) of Norwegian PWPs are diagnosed within 2 s. This is the slowest in the region. Time to diagnosis 2.3% 4.6% 24.6% 9.2% 0.0% 49.2% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, a quarter (26%) of PWPs in Norway had consulted only one doctor about their Parkinson s symptoms. Just under half (43%) had seen two doctors and a further fifth (22%) saw a third doctor. Just 9% of PWPs in Norway had consulted more than three doctors before a diagnosis was given. PWPs in Norway tend to consult more doctors before receiving a diagnosis than those in other Northern European countries. For further details, please see the Demographic Tables in Appendix. 63

64 Method of receiving diagnosis Nearly three quarters (7%) of Norwegian PWPs received their diagnosis from a neurologist, with just a fifth (22%) receiving the information from a doctor specialising in Parkinson s. Only 3% received the diagnosis from a family doctor and 5% from a hospital doctor. Norway has demonstrated the highest involvement of Parkinson s specialists in the region, in a pattern more similar to Eastern Europe than Northern Europe. Who gave the diagnosis? 2.5% 0.0% 3.% 4.6% 70.8% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated A large majority (78%) of Norwegian PWPs are aware of Parkinson s specialists in Norway, while the remainder (22%) claimed they did not know. This awareness is very slightly lower than that seen in Northern Europe regionally. In Norway, almost all (95%) PWPs received their diagnosis in person. 3% received this by telephone (the remainder did not answer the question). Norwegian PWPs had a very slightly positive overall reaction to the way in which they were dealt with by doctors at the time of diagnosis. Half (5%) responded positively, with a peak at 8/0 (20%). The other half (49%) gave a negative score, this score being fairly evenly distributed across the individual scores. 25% Response to diagnosis 20% 8.5% 20.0% 5% 3.8% 0.8% 0.8% 0% 5% 6.2% 3.% 7.7% 4.6% 4.6% 0% Abruptly Kindly 0.0% Not stated 64

65 Information available at diagnosis All Norwegian PWPs received some form of information when diagnosed. Two thirds (65%) of PWPs received general information on Parkinson s; small groups received detailed information (4%) and medical information (%), while nearly a quarter (23%) received information on telephone helplines. This is the second highest in the region (marginally behind Finland) for information availability. Almost two thirds (62%) of responders rated this available information as Helpful or Very helpful ; a quarter (25%) found the information Of little help. This was the second most positive rating in the region after Denmark. Experience of diagnosis Norwegian PWPs were generally satisfied with how the diagnosis was given. The majority (62%) reported Good or Very good, while the remainder (38%) stated Poor or Very poor. Verbatim comments were split between positive, neutral and negative reactions. Negative reactions predominated, often relating to a disappointing attitude/manner on the part of the diagnosing physician. To balance this, there were also some comments on how good the physician had been, but not as many. Some PWPs also described how they were shocked or devastated by the news. Several respondents gave positive comments which referred to being relieved to find a definitive diagnosis for their ailments. Follow-up visits In Norway, the neurologist dominates follow-up care for Parkinson s patients, although Parkinson s specialists also play a significant role more so than in any other country in the region. The large majority (88%) of PWPs have consulted a neurologist at some point during the 2 s following diagnosis; two thirds of PWPs (65%) saw a specialist in Parkinson s. 40% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 40.0% 38.7% 35.0% 35.5% 30% Neurologist 20% 0% 0% 2.5% 3.2% Monthly once a 6.% twice a 0.0% 6.5% 3 times a 0.0% 0.0% 0.0% 0.0% Once in 8 months Once in 2 s 2.5% Never Parkinson's Specialist 65

66 A neurologist is seen most commonly twice a (40%), or once a (35%). A Parkinson s specialist is normally consulted twice a (39%), or three times a (6%). Hospital doctors were visited by a sizeable minority (40%) of Norwegian PWPs, most commonly once a (30%). Family doctors play a significant role, and were seen by nearly all (95%) of Norwegian PWPs most commonly three times a (32%), or once a (28%). The neurologist undertakes the largest share of Parkinson s care post-diagnosis. The Parkinson s specialist also plays a significant role in this. The Norwegian family doctor also has a major role to play and regularly sees PWPs with regard to their Parkinson s. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 4.0% 28.% 7.5% 3.6% 0.0% 3.5% 5.3% Hospital Doctor 0.0% 20.0% 2.5% 7.5% 0.0% 0.0% 60.0% Neurologist 2.5% 35.0% 40.0% 0.0% 0.0% 0.0% 2.5% Parkinson s Specialist 3.2% 38.7% 6.% 6.5% 0.0% 0.0% 35.5% Geriatrician 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 00.0% In certain respects, Norway is similar to Eastern European countries in the split of care both pre- and post-diagnosis, but this may not take into account intra-country variations such as urban/rural splits. Parkinson s organisations and support groups In Norway, almost all (9%) of responding PWPs were members of a national association. 8% stated No (the remainder did not answer). Of six comments offered in the survey, four referred to the fact that it was too soon after diagnosis, but that PWPs did intend to join. Nearly all PWPs who were members of a national organisation rated the information from that organisation highly. A huge majority (90%) found this information to be Good (47%) or Very good (43%); very few (5%) found the information Of little help (the remainder did not answer). Although high overall, this was the second lowest rating in the region. With regard to how beneficial the organisation s services were, More than three quarters (79%) said Good or Very good, while 7% found the services to be Poor or Very poor (4% did not answer this question). This was better than the regional score. In Norway, two thirds (64%) did not use a support group. A third (3%) used a local support group, a sixth (6%) used an online group and no one said they used an overseas group. 66

67 Sweden Demographics Two hundred and sixty-six responses were analysed from PWPs in Sweden (3% of the total survey, 44% of Northern Europe). Of these, 52% were male and 48% were female. The proportion of males was lower than the overall European figure, but above the Northern European sample. Ages ranged from (0%), to over 80 (2%) was the most common age range (44%), although was also well represented (28%). In the Swedish sample, less than % of PWPs were diagnosed before 980, and only a total of 4% were diagnosed before % were diagnosed between 2006 and 200. The majority of PWPs in Sweden (75%) were diagnosed since Time to diagnosis In Sweden, almost three quarters (73%) of PWPs received their diagnosis within of consultation. Only 5% received a diagnosis in to 2 s and 3% of PWPs waited more than 5 s for a diagnosis. A very large majority (88%) of Swedish PWPs are diagnosed within 2 s, which is very similar to the Northern European figure. 0.8% 3.4%.% 0.8% 5.7% Time to diagnosis 5.2% 73.% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, almost a third (30%) of PWPs in Sweden had consulted only one doctor about their Parkinson s symptoms. Nearly half (4%) had seen two doctors and a further 5% saw a third doctor. Just over one in ten (3%) Swedish PWPs had consulted more than three doctors before a diagnosis was given. 2 This is the highest rate of early diagnosis in Northern Europe and the second highest rate (after Malta) outside Western Europe. This gives Sweden a relatively recent, rapidly diagnosed population of PWPs. For further details, please see the Demographic Tables in Appendix. 2 The remainder did not answer. 67

68 Method of receiving diagnosis Four out of five (80%) Swedish PWPs received their diagnosis from a neurologist, with a further one in ten (%) receiving the information from a doctor specialising in Parkinson s. Only 7% received the diagnosis from a family doctor and 4% from a hospital doctor. This is very similar to the overall regional performance. The pre-eminence of neurologists is typical of the European picture, especially in Northern and Western Europe. Who gave the diagnosis? 8.3% 0.8% 0.4% 6.8% 4.2% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 79.5% Most (87%) Swedish PWPs were aware of a Parkinson s specialist in their country, while just 2% answered No and % Don t know. This awareness is slightly higher than that seen in Northern Europe regionally. In Sweden, almost all (96%) of PWPs received their diagnosis in person. 3% received this by telephone and % by letter. Swedish PWPs were generally positive towards the way in which they were dealt with by doctors at the time of diagnosis. 64% responded positively, with a peak at 0/0 for kindly attitude (27%). 35% gave a negative score; the negative score was quite strongly polarised between 5/0 ( Borderline ) scores (%) and /0 ( Very abrupt ) scores (%), the remainder of negative scores being fairly evenly spread between these two positions. This is more positive than the region generally and is also above average for the survey. 68

69 Response to diagnosis 30% 27.3% 25% 20% 5% 0% 5% 0.6% 6.% 4.2% 3.4%.0% 4.9% 8.0% 3.3%.0% 0% Abruptly Kindly 0.4% Not stated Information available at diagnosis All Swedish PWPs received some form of information when diagnosed. Two thirds (67%) of PWPs received general information on Parkinson s following diagnosis. A further 9% received detailed information, while 2% report receiving medical information. 2% received information about support organisations while one in five (22%) received information on telephone helplines. This level of information, while good, is in the lower half of the regional results. Swedish PWPs had a very mixed reaction to the information they received. Just under half (46%) of PWPs rated this available information as Helpful or Very helpful ; slightly fewer (40%) found the information Of little help ; 4% did not answer this question. With the exception of Lithuania, this was the lowest assessment within the region. Experience of diagnosis Swedish PWPs were generally dissatisfied with how the diagnosis was given. Only 4% reported Good and none at all scored Very good, while most (86%) stated Poor or Very poor. This dissatisfaction rating is the lowest in the region by a 0% margin, and the second lowest (after Hungary) in the entire survey. Roughly half of the verbatim comments received were negative, with a fair proportion (just under a third) describing being shocked by the news. Positive comments related mostly to being relieved that a definitive diagnosis was received. Around 0% of the comments referred to the need for useful information. Follow-up visits In Sweden, the neurologist dominates follow-up care for Parkinson s patients. Nearly all (92%) have consulted a neurologist at some point during the 2 s following diagnosis. Just under half (44%) saw a specialist in Parkinson s; 56% of Swedish PWPs report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. 69

70 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 56.0% 50% 40% 39.6% Neurologist 30% 20% 26.4% 4.7% 8.0% 5.2% Parkinson's Specialist 0% 0%.0% 0.7% Monthly once a twice a 5.3% 3 times a 4.%.3% Once in 8 months 5.6% 4.0% Once in 2 s 8.% Never A neurologist is seen most commonly twice a (40%), or once a (26%). A Parkinson s specialist is normally consulted twice a (8%), or once a (5%). Hospital doctors were visited by slightly more than a quarter (29%) of Swedish PWPs, most commonly once a (2%). Family doctors were seen by just over half (53%) of Swedish PWPs, most commonly once a (7%). The neurologist has the largest share of the workload in the Parkinson s care process, with Parkinson s specialists assisting in just under half of the cases. This is a common pattern in the Northern European region. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor.0% 6.8% 2.0% 2.5% 3.4% 7.2% 47.% Hospital Doctor 0.0%.9% 6.3% 5.7%.9% 3.% 7.% Neurologist.0% 26.4% 39.6% 5.2% 4.% 5.6% 8.% Parkinson s Specialist 0.7% 4.7% 8.0% 5.3%.3% 4.0% 56.0% Geriatrician 0.0% 2.2% 6.0% 0.0% 0.0%.5% 90.3% Parkinson s organisations and support groups In Sweden, most (88%) PWPs were members of a national association; almost all the rest (%) stated No and % did not answer. A variety of comments were offered for not being members of a national organisation, the most frequent (nearly a third of comments) was that it was too soon. Nearly all PWPs who were members of a national organisation rated the information from that organisation highly. The majority (94%) found this information to be Good (35%) or 70

71 Very good (59%); only 4% found the information Of little help. Although high, this rating was lower than the regional score. With regard to how beneficial the organisation s services were, nearly three quarters (70%) said Good or Very good. This was nearly all the PWPs who answered this question. Only % found the services to be Poor or Very poor (29% did not answer this question); this was only slightly lower than the regional score. In Sweden, almost two thirds (6%) did not use a support group. A third (34%) reported that they used a local support group, 8% used an online group and less than % said they used an overseas group. The remainder did not answer this question. 7

72 United Kingdom Demographics One hundred and three responses were analysed from PWPs in the UK (5% of the total survey, 7% of Northern Europe). Of these, 46% were male and 54% were female. The proportion of males was lower than the overall European figure, but only slightly below the Northern European sample. Ages ranged from (3%), to over 80 (4%) was the most common age range (39%), although was also well represented (30%). 2 In the UK sample, just less than % of PWPs were diagnosed between 98 and % were diagnosed between 2006 and 200. The majority of PWPs in the UK (8%) were diagnosed since Time to diagnosis In the UK, two thirds (65%) of PWPs received their diagnosis within of consultation. 8% received a diagnosis in to 2 s, while 6% of PWPs waited more than 5 s for a diagnosis. Most (83%) UK PWPs are diagnosed within 2 s, very similar to the Northern European figure. Time to diagnosis 9.2% 3.0% 6.%.0% 0.0% 6.% 64.6% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, just under half (47%) of PWPs in the UK had consulted only one doctor about their Parkinson s symptoms. A third (32%) had seen two doctors and a further 4% saw a third doctor. Just 7% of PWPs in the UK had consulted more than three doctors before a diagnosis was given. In the UK, fewer doctors are consulted before a diagnosis is given, in comparison to all regional performances. Method of receiving diagnosis Most (8%) UK PWPs received their diagnosis from a neurologist, with a further % receiving the information from a doctor specialising in Parkinson s. Only 4% received the diagnosis from a family doctor and 3% from a hospital doctor. This is very similar to the regional Including responses from Scotland and Wales. 2 For further details, please see the Demographic Tables in Appendix. 72

73 performance, with the exception of Lithuania. The pre-eminence of neurologists is typical of the European picture, especially in Northern and Western Europe..% Who gave the diagnosis?.9% 0.0% 3.7% 2.8% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 80.6% The majority (82%) of UK PWPs were aware of a Parkinson s specialist in their country, while 5% answered No and 4% Don t know. This awareness is very similar to that seen in Northern Europe regionally. In the UK, almost all (98%) PWPs received their diagnosis in person, while just 2% received this by telephone. UK PWPs had an overall positive reaction to the way in which they were dealt with by doctors at the time of diagnosis. Just under two thirds (63%) responded positively, with a peak at 0/0 ( Kindly ) of 9%. Half this number (37%) gave a negative score, with a negative peak at /0 ( Abruptly ) of 0%. This was the second most positive score in the region after Sweden. Response to diagnosis 20% 8.5% 5% 3.0% 4.8% 3.0% 0% 5% 0.2% 6.5% 5.6% 7.4% 9.3%.9% 0% Abruptly Kindly 0.0% Not stated 73

74 Information available at diagnosis All UK PWPs received some form of information when diagnosed; just under half (46%) of PWPs received general information on Parkinson s following diagnosis. A further 6% received detailed information, while almost a third (30%) report receiving medical information. Only 7% received information on support organisations, but a third (34%) received information on telephone helplines. This is ahead of most countries in the survey. Half (48%) of responders rated this available information as Helpful or Very helpful. A third (32%) found the information Of little help (20% did not answer). This was below the general rating for the region. Although information was available, the quality of it did not meet the needs/hopes of a large proportion of the PWPs. Experience of diagnosis UK PWPs were generally satisfied with how the diagnosis was given. Almost three quarters (70%) reported Good or Very good, while the rest (30%) stated Poor or Very poor. This puts the UK in the group of satisfied countries within the region, with Finland, Ireland and, to a lesser extent, Norway. Despite the above, over one in five of the comments left referred to the need for better (more practical/useful) information. Overall, the majority of comments were negative, describing shock in many cases. Several comments referred to poor consulting behaviour, while a few described a negative reaction made better by good consulting behaviour. This element obviously plays a role in shaping the reaction of a newly diagnosed person. Follow-up visits In the UK, the neurologist dominates follow-up care for Parkinson s patients. Nearly all (89%) have consulted a neurologist during the 2 s following diagnosis. Less than half this number (40%) saw a specialist in Parkinson s. 60% of UK PWPs report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 60.0% 50% 44.6% 40% Neurologist 30% 20% 0% 0% 2.5% 0.0% Monthly 9.0% 2.7% once a 5.2% twice a 6.0% 7.6% 3 times a 3.0% 0.0% Once in 8 months 4.8% 3.0% Once in 2 s 0.8% Never Parkinson's Specialist 74

75 A neurologist is seen most commonly twice a (45%), or once a (9%). A Parkinson s specialist is normally consulted twice a (5%), or once a (3%). Hospital doctors were visited by over a third (39%) of UK PWPs, most commonly twice a (8%). Family doctors were seen by two thirds (65%) of UK PWPs most commonly three times a (28%). The neurologist is the doctor who is most commonly consulted about Parkinson s in the UK, following diagnosis. Parkinson s specialists are consulted by a minority (40%) of PWPs in the UK. This is a common pattern across Northern Europe. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor.7% 7.5% 8.4% 28.2% 2.9% 2.9% 8.4% Hospital Doctor 0.0% 6.9% 8.4% 8.0% 3.4% 2.3% 60.9% Neurologist 0.0% 9.3% 45.5% 5.9% 3.4% 4.5%.4% Parkinson s Specialist 2.5% 2.5% 5.0% 7.5% 0.0% 2.5% 60.0% Geriatrician 0.0% 0.0% 4.% 2.7%.4%.4% 90.5% Parkinson s organisations and support groups In the UK, the vast majority (84%) of responding PWPs were members of a national association; 5% stated No and the remainder did not answer. The few comments offered were very varied, without general pattern. There were three comments which suggested that the Parkinson s organisation in the UK was not well regarded and local groups were preferred to a national one. Despite these comments, almost all PWPs who were members of a national organisation rated the information from that organisation very highly. Nearly all (99%) found this information to be Good (36%) or Very good (63%); only % found the information Very poor. This rating was the best in the region and among the best overall. With regard to how beneficial the organisation s services were, nearly all of those who answered (80% of PWPs) said Good or Very good. Only 2% found the services to be Poor or Very poor (8% did not answer this question). This was better than the regional score. In the UK, just over a third (36%) did not use a support group. Nearly half (45%) used a local support group, over a quarter (28%) used an online group and just % said they used an overseas group. This is the highest number of local support group users in the region (at the same level as Lithuania). Only one European country analysed had more PWPs using local support groups (Austria, at 76%). 75

76 Southern Europe Demographics Four hundred and ninety responses were analysed from PWPs in Southern Europe (24% of the total survey). Of these, 60% were male and 40% were female. This split has slightly more males than the overall European gender split, but is broadly in line with the rest of Europe. Ages ranged from under 30 s (0%, individual) to over 80 (8%), with being the most common age range (26%). This age distribution is the oldest age range in Europe, and also the flattest distribution across the age ranges, with almost equal numbers in the age ranges (22%), (24%) and (26%). The time since diagnosis in Southern Europe is very similar to that seen in Europe as a whole: four patients (0.8%) were diagnosed before 980, while 85 (38%) were diagnosed between 2006 and 200, with a steady increase in the number of respondents over this time, echoing the general European pattern. The Southern Europe sample contained the following national contributions: Percentage of total analysed in Southern Europe Percentage of total analysed in Europe Number of forms Southern Europe analysed Croatia 2 2 <% <% Cyprus 3 <% <% Greece 53 3% 7% Israel 2 4% % Italy 80 37% 9% Malta 6 3% % Portugal 3 % <% Slovenia 68 4% 3% Spain 4 8% 2% Turkey 3 % <% Total Region % 24% Time to diagnosis In Southern Europe, over half (57%) of PWPs received their diagnosis within of consultation, the lowest rate in Europe. 6% received a diagnosis in to 2 s. % did not answer this question, which is the highest rate in the survey. For further details, please see the Demographic Tables in Appendix. 2 Not analysed due to small sample size (less than 0 respondents). 76

77 Time to diagnosis.2% 3.9% 2.9% 3.9% 5.8% 5.5% 56.8% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, just under a third (3%) of PWPs in Southern Europe had consulted only one doctor about their Parkinson s symptoms, nearly two thirds (60%) had seen one or two doctors and a further 7% saw a third doctor. Nearly a quarter (22%) had seen more than three doctors before receiving a diagnosis. On average, as a region, Southern Europe is slower to diagnose, and PWPs visit more doctors than elsewhere in Europe. Method of receiving diagnosis Nearly two thirds (62%) of Western European PWPs received their diagnosis from a neurologist, the lowest rate in Europe for neurologist diagnosis. A further 9% received the information from a doctor with a special interest in Parkinson s. Only 5% received the diagnosis from a family doctor, and 0% from a hospital doctor. In common with Eastern Europe, there is a higher involvement of Parkinson s specialists and a lower level of involvement of neurologists with the diagnosis of Parkinson s. Who gave the diagnosis? 9.0% 0.6% 2.% 5.6% 0.3% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 62.4% % did not answer this question. 77

78 Three quarters (76%) of Southern European PWPs were aware of a Parkinson s specialist in their country, while 9% answered No and 4% Don t know. This is generally similar to the European level of awareness. In Southern Europe, almost all (98%) of PWPs received their diagnosis in person, consistent with the rest of Europe. Just two individuals received their diagnosis over the telephone; four PWPs did not answer the question. Southern European PWPs reported very similar reactions to the way in which they were dealt with by doctors. 54% gave a positive score, peaking at a rating of 0/0 for kindly handling. This rating is similar to the rest of Europe, but Southern Europe had the highest proportion of not stated in the survey for this question. Response to diagnosis 20% 9.8% 5% 4.9% 0% 0.3% 9.7% 7.6% 7.4%.4% 8.3% 5% 4.3% 3.5% 2.7% 0% Abruptly Kindly Not stated Information available at diagnosis Nearly two thirds (63%) of PWPs received general information on Parkinson s following diagnosis (the same as in Europe generally). Almost a quarter (2%) received detailed information and 6% report receiving medical information. A substantial group (6%) reported receiving information on a telephone helpline. This is broadly in line with the rest of Europe; however, it can be noted that Eastern Europe and Southern Europe have a similar pattern of information distribution, with good levels of general information and more detailed information, although less medical information and telephone helpline information available. The average in Southern Europe is brought down by a lower level in Greece. The general level of satisfaction with the information given is very similar to the European average, with nearly two thirds (60%) of those answering the question reporting that it was Note that Southern Europe has a uniquely large number of not stated to this question; this percentage is of those answering. 78

79 Helpful or Very helpful. This is higher than in Northern and Western Europe, but not quite as good as Eastern Europe. Experience of diagnosis The assessment of how the diagnosis was given very closely follows the European pattern with over half (54%) saying Good or Very good, and a smaller group (42%) saying Poor or Very poor. In Southern Europe, the verbatim comments reflected very closely the European situation. Just over half of respondents reported a negative feeling when receiving their diagnosis. A quarter of respondents spoke of a positive experience. Follow-up visits Only a quarter (24%) of Southern Europeans report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. Almost three quarters (72%) claim to see a Parkinson s specialist at least once a ; this is the highest consulting rate for this speciality. Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 35% 30% 25% 24.5% 24.7% 3.0% 28.5% 23.8% 20% Neurologist 5% 0% 4.7% 7.3% 3.6%.3%.4% Parkinson's Specialist 5% 2.7% 2.0% 2.2% 2.3% 0% Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Most (89%) patients saw a neurologist (24% twice and 3% three times a ), suggesting a significant overlap, with patients seeing different doctors during the course of the. A substantial number (84%) saw a family doctor (28% monthly) with regard to their Parkinson s. Over half (59%) saw a hospital doctor at some point. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 28.3% 3.8% 4.8% 27.0%.3%.% 3.8% Hospital Doctor 7.9% 8.4% 3.0% 2.0% 2.5% 4.7% 4.5% Neurologist 4.7% 3.6% 24.5% 3.0% 2.7% 2.2%.4% Parkinson s Specialist 7.3%.3% 24.7% 28.5% 2.0% 2.3% 23.8% Geriatrician.5% 3.4%.%.9% 0.7% 3.7% 87.6% 79

80 Southern Europe has a higher involvement of Parkinson s specialists, similar to Eastern Europe. However, the neurologist still dominates care responsibilities in this region. Parkinson s organisations and support groups In Southern Europe, less than half (44%) of PWPs in the survey stated they were members of a national Parkinson s organisation, the lowest scoring region in the survey. Over half (53%) claimed not to be members, with 3% failing to answer the question. Of those who were not members of a national organisation, half (47%) said they were not aware of such an organisation. A further 0% said it was too soon for them (recent diagnosis). Of those who were members of a national organisation, three quarters (72%) rated the helpfulness of information as Good or Very good. Only 3% felt that it was Poor or Very poor. Over half (59%) of respondents found the services of the organisation to be Good or Very good. Just 4% said Poor or Very poor. In Southern Europe, the majority (70%) did not use a support group. Nearly a third (30%) reported using such a group: most (7%) used a local support group; 7% used an online group and % said they used an overseas group. Southern Europe has a similar overall use of local support groups to Western Europe. This use is significantly lower than that seen in Eastern and Northern Europe. 80

81 Greece Demographics One hundred and fifty-three responses were analysed from PWPs in Greece (3% of Southern Europe and 7% of the total survey). Of these, 62% were male and 38% were female. The proportion of males was significantly higher than the overall European figure, but not atypical for Southern Europe. Ages ranged from (5%) to 80 and over (5%). The most common age range was (29%), then (27%). This indicates a relatively elderly PWP population in Greece, but quite similar to the Southern European age distribution, which is older than other regions in the survey. In Greece, a few (%) of the PWPs were diagnosed before % were diagnosed between 2006 and % of Greek PWPs were diagnosed since This is a relatively low proportion, compared to the survey generally, but similar to other Southern European countries. The characteristics of the Greek sample are typical of Southern Europe in general. Time to diagnosis In Greece, only just over a third (39%) of PWPs received their diagnosis within of consultation. A further fifth (20%) received a diagnosis in to 2 s. % of PWPs waited more than 5 s for a diagnosis. A third (32%) of Greek PWPs did not, or could not, answer this question including Don t know. The overall time taken to diagnosis is longer than the general survey, and also longer than Southern Europe, which itself has a slow diagnosis time. 9.0% Time to diagnosis Under 23.4%.4% 3.4% 3.4% 39.3% - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated 20.0% When diagnosed, just over a third (35%) of PWPs in Greece had consulted one doctor about their Parkinson s symptoms. A quarter (23%) consulted two doctors. A further quarter For further details, please see the Demographic Tables in Appendix. 8

82 (23%) had each consulted more than three doctors before a diagnosis was given. On average, PWPs in Greece consult slightly more doctors than those in the region as a whole. Method of receiving diagnosis Three quarters (73%) of Greek PWPs received their diagnosis from a neurologist. % received their diagnosis from a doctor specialising in Parkinson s. 0% received the diagnosis from a hospital doctor. Only 4% received their diagnosis from a family doctor. These numbers are consistent with the pattern in the Southern Europe region..0% Who gave the diagnosis? 0.7% 0.7% 4.% 0.3% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 73.% Two thirds (65%) of Greek PWPs were aware of a Parkinson s specialist in their country. 6% stated there was not such a specialist in Greece and one in five (9%) did not know. All Greek PWPs (who answered the question) received their diagnosis in person. The majority of Greek PWPs rated the way they were given their diagnosis positively. Overall, the majority (60%) thought this diagnosis was handled in a kindly way, while a far smaller group (38%) thought it was abrupt (2% did not answer). This is a typical score for the survey. Of the remainder, 7% consulted three doctors; 2% did not answer. 82

83 Response to diagnosis 40% 30% 30.3% 20% 5.2%.7%.0% 0% 3.4% 2.8% 4.8% 6.2% 6.2% 6.2% 2.% 0% Abruptly Kindly Not stated Information available at diagnosis Just under% of Greek PWPs in the survey (one individual) reported that they did not receive information when diagnosed. The remainder all said they received some form of information at this time. Almost two thirds (62%) of PWPs received general information on Parkinson s following diagnosis. A fifth (2%) received detailed information, just % received medical information and % received information about support groups. One in five (8%) received information regarding a telephone helpline. Once again, this is typical of the region. Two thirds (63%) of responders rated the available information as Helpful or Very helpful. Less than a third (29%) found it to be Of little help and the remainder did not answer. This is one of the higher (better) scores in the Southern region. Experience of diagnosis All of the Greek PWPs were satisfied with how the diagnosis was given, rating this as Good. Few verbatim comments were submitted to the survey, and these were very varied. Just over half of the comments reported a negative experience. Of these, about a fifth of all comments mentioned the need for better information. Follow-up visits In Greece, most (84%) responding PWPs saw a neurologist at some point following diagnosis; two thirds (64%) saw a Parkinson s specialist at some point following diagnosis. The most common frequency of these visits was three times a (40% and 30%, respectively). 83

84 50% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 40% 40.3% 30% 24.4% 29.9% 32.7% Neurologist 20% 9.3% 5.0% Parkinson's Specialist 0% 0% 0.3% 0.% 9.3% Monthly once a twice a 3 times a 2.8% 0.0% 0.0% 0.8% Once in 8 months Once in 2 s 5.0% Never Three quarters (77%) of PWPs saw their family doctor, most commonly at least three times a (32%). Almost two thirds (63%) of Greek PWPs saw a hospital doctor, most commonly once a. Greece also has the highest proportion of neurologist involvement in the region. It is also the highest level of involvement of a Hospital doctor in the entire survey. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 5.9% 0.6% 8.6% 3.9% 0.9% 0.9% 2.2% Hospital Doctor 2.6% 9.8% 3.5% 7.%.8% 6.3% 28.8% Neurologist 24.4% 0.% 9.3% 40.3% 0.0% 0.8% 5.0% Parkinson s Specialist 0.3% 9.3% 5.0% 29.9% 0.0% 2.8% 32.7% Geriatrician.% 2.3%.%.% 0.0% 0.0% 94.3% Parkinson s organisations and support groups Only a quarter (27%) of Greek PWPs claim to be members of a national Parkinson s organisation. This is the lowest national membership throughout the region. Nearly eight out of ten (79%) said they were not members. A total of 3% of Greek responders believed there was no patient organisation in Greece. Of the comments left, referring to why respondents were not organisation members, the majority (around three quarters) referred to lack of knowledge of such an organisation. Minority topics were no point, not comfortable in that sort of situation and practical difficulties including high charges for seminars. Those PWPs who were members of a national organisation rated the helpfulness of the information from that organisation very highly. The vast majority (85%) found the information to be Very good or Good. Only 4% found it to be Poor. 84

85 Most (87%) Greek PWPs claimed they did not use a local support group. This was the highest proportion of non-users in the region. Among those who did, 3% used a local group, 8% used an online group and % claimed to use an overseas group. 85

86 Israel Demographics Twenty-one responses were analysed from PWPs in Israel (4% of Southern Europe and % of the total survey). Of these, 48% were male and 52% were female. This is the lowest proportion of males in the Southern Europe region, and equivalent to the overall split in Northern Europe. Ages ranged from (0%) to 80 and over (5%). The most common age range was (38%). Although the age distribution in Israel is generally shifted to the older end of the range, the peak comes at a younger age than most other countries. In Israel, a few (5%) of the PWPs were diagnosed between 986 and 990. The majority of Israeli PWPs were diagnosed between 2000 and 2005 (46%). Either side of this peak the diagnosis rate falls off; 8% were diagnosed between 2006 and 200 and 8% were diagnosed between 996 and Time to diagnosis In Israel, nearly two thirds (64%) of PWPs received their diagnosis within of consultation. Just 5% received a diagnosis in to 2 s. Only 5% of PWPs waited more than 5 s for a diagnosis. 4% of Israeli PWPs answered Don t Know. If the proportions of the answers received are reliable, then three quarters (74%) of Israeli PWPs were diagnosed within. This is the fastest result in the Southern European region, and equals the best times in the survey. Time to diagnosis 3.6% 0.0% 4.5% 4.5% 9.% 4.5% 63.6% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, 8% of PWPs in Israel had consulted one doctor about their Parkinson s symptoms. A further 8% consulted two doctors. The largest group (4%) saw three doctors; almost a quarter (23%) of PWPs had each consulted more than three doctors before a diagnosis was given. This is a very high level of referral prior to diagnosis. For further details, please see the Demographic Tables in Appendix. 86

87 Method of receiving diagnosis Diagnosis of Parkinson s in Israel is shared between neurologists and Parkinson s specialists in roughly similar proportions. 55% of PWPs received their diagnosis from a neurologist; 40% received their diagnosis from a Parkinson s specialist. No other doctor was involved in delivering Parkinson s diagnoses, despite the multiple consultations noted earlier. 0.0% 4.5% 0.0% Who gave the diagnosis? 40.9% 54.5% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated Almost all (9%) of PWPs in Israel were aware of Parkinson s specialists in Israel; 9% said they did not know. All Israeli PWPs who answered this question received their diagnosis from a neurologist (4% of the Israeli PWPs did not answer). The majority of Israeli PWPs rated the way they were given their diagnosis positively. Overall, two thirds (68%) thought this diagnosis was handled in a kindly way, while the remaining third (32%) thought it was abrupt. In this regard, Israel was a very close second to Italy in rating this situation positively. 50% Response to diagnosis 50.0% 40% 30% 20% 3.6% 0% 9.% 9.% 4.5% 4.5% 9.% 0% Abruptly 0.0% 0.0% 0.0% Kindly 0.0% Not stated 87

88 Information available at diagnosis All Israeli PWPs in the survey reported that they received some form of information when diagnosed. Just under half (4%) of PWPs received general information on Parkinson s at this time. Relatively small numbers received detailed information (4%), medical information (9%) and information about support groups (5%). The largest group (46%) received information regarding a telephone helpline. This was a high rating, third in the region, closely following Slovenia and Italy (very close together). The value of this information received a mixed reception. Just over a third (36%) of responders rated the available information as Helpful (32%) or Very helpful (5%). Only slightly fewer (32%) found it to be Of little help and the remaining 32% did not answer. This is the lowest score in the region. Experience of diagnosis Israeli opinions on how the diagnosis was given were also mixed, but leaned towards the positive overall. Half rated this as Very good, a quarter rated this as Poor and a quarter did not answer. This means that there were twice as many positive answers as negative answers. Of the few verbatim comments that were submitted to the survey, most related to poor bedside manner. Follow-up visits In Israel (as in Italy) more Parkinson s patients are maintained by a Parkinson s specialist than by a neurologist. Two thirds (64%) of responding PWPs saw a neurologist at some point following diagnosis, while almost four out of five (79%) saw a Parkinson s specialist at some point following diagnosis. 40% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 36.4% 35.7% 35.7% 30% 27.3% Neurologist 20% 0% 9.% 7.% 8.2% 9.% 7.% 4.3% Parkinson's Specialist 0% 0.0% Monthly 0.0% once a twice a 3 times a 0.0% 0.0% Once in 8 months Once in 2 s Never Neurologists were seen most commonly twice a (36%). Parkinson s specialists were seen either three times a (36%), or twice a (36%). 67% of PWPs saw their family 88

89 doctor, most commonly at least twice a (22%). Only 25% saw a hospital doctor, most commonly three times a. With the exception of Italy, this is the highest proportion of Parkinson s specialist involvement outside Eastern Europe, and the only country analysed in the survey (beside Italy) that has a greater involvement of Parkinson s specialists than neurologists. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 0.0%.% 22.2% 33.3% 5.6% 0.0% 27.8% Hospital Doctor 0.0% 8.3% 0.0% 6.7% 0.0% 8.3% 66.7% Neurologist 9.% 0.0% 36.4% 8.2% 0.0% 9.% 27.3% Parkinson s Specialist 0.0% 7.% 35.7% 35.7% 0.0% 7.% 4.3% Geriatrician 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 00.0% Parkinson s organisations and support groups Only a third (36%) of Israeli PWPs claim to be members of a national Parkinson s organisation, lower than all Southern European countries except Greece. One Israeli responder believed there was no patient organisation in Israel. All PWPs who were members of a national organisation rated the helpfulness of the information from that organisation very highly. Roughly half (47%) found the information to be Very good, while the remaining half (53%) found it to be Good. No one found it to be Poor. Almost half (48%) of Israeli PWPs claimed they did not use a local support group; this was the highest proportion of non-users in the region. Among those who did, 38% used a local group, 9% used an online group and 9% claimed to use an overseas group. 89

90 Italy Demographics One hundred and eighty responses were analysed from PWPs in Italy (37% of Southern Europe and 9% of the total survey). Of these, 6% were male and 39% were female. The proportion of males was high for the overall survey, and slightly above the Southern Europe level. Ages ranged from under 30 (%) to 80 and over (0%). The most common age ranges were (25%) and (25%). Most Italian PWPs are spread quite evenly between the ages of 50 and 80 (72%). In Italy, a few (%) of the PWPs were diagnosed before % were diagnosed between 2006 and % of Italian PWPs were diagnosed since This sits in the middle of the Southern European countries and is only slightly higher than the regional figure. Time to diagnosis In Italy, over two thirds (70%) of PWPs received their diagnosis within of consultation. A further 2% received a diagnosis in to 2 s. Just 2% of PWPs waited more than 5 s for a diagnosis. Italy boasts the highest proportion of diagnoses in in the entire region. Time to diagnosis.6% 5.5% 4.4%.7% 2.2% 4.4% 70.2% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated By the time they were diagnosed, a quarter (25%) of PWPs in Italy had consulted one doctor about their Parkinson s symptoms. A further third (35%) consulted two doctors. 9% had consulted more than three doctors before a diagnosis was given. 2 Method of receiving diagnosis Almost three quarters (72%) of Italian PWPs received their diagnosis from a neurologist. 7% received their diagnosis from a doctor specialising in Parkinson s and 9% received the diagnosis from a hospital doctor. Only 2% received their diagnosis from a family doctor. These numbers are consistent with the pattern in the Southern Europe region. For further details, please see the Demographic Tables in Appendix. 2 Of the remainder, 9% consulted three doctors; 2% did not answer. 90

91 Who gave the diagnosis? 7.% 0.0% 2.2% 8.8% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 7.8% Most (87%) Italian PWPs were aware of a Parkinson s specialist in their country. 6% stated there was not such a specialist in Italy. 6% did not know and the rest did not answer. Nearly all (97%) Italian PWPs received their diagnosis in person. Just under % received their diagnosis by telephone, just over % received their diagnosis by letter and the remainder did not answer. The majority of Italian PWPs rated the way they were given their diagnosis positively, giving the highest overall score for the region. Two thirds (69%) thought this diagnosis was handled in a kindly way, while just under a third (29%) thought it was abrupt (2% did not answer). Response to diagnosis 20% 9.3% 7.7% 5% 2.7% 0% 0.5% 9.4% 9.9% 6.6% 6.% 5% 3.3% 2.2% 2.2% 0% Abruptly Kindly Not stated Information available at diagnosis Just under% of Italian PWPs in the survey (one individual) reported that they did not receive information when diagnosed. The remainder all said they received some form of information at this time. Almost two thirds (64%) of PWPs received general information on 9

92 Parkinson s following diagnosis. A quarter (24%) received detailed information, 9% received medical information and 4% received information about support groups. 5% received information regarding a telephone helpline. This is typical of the region. Over half (58%) of responders rated the available information as Helpful or Very helpful. A third (33%) found it to be Of little help and the remainder did not answer. Experience of diagnosis Italian PWPs were satisfied (on average) with how the diagnosis was given. More than half (52%) felt that it was Good (29%) or Very good (23%). Less than half (42%) felt it was Poor (36%) or Very poor (7%). Verbatim comments covered a wide range of subjects from shocked and depressed through need more information to relieved to have a diagnosis. On balance, negative comments were more common, making up just under half of the total. Just over a third were positive and the rest were neutral or did not offer an opinion one way or the other. Follow-up visits In Italy, the neurologist and the Parkinson s specialists have a more or less equal share in follow-up care for PWPs. Most (8%) of responding PWPs saw a neurologist at some point following diagnosis; a slightly larger proportion (86%) saw a Parkinson s specialist at some point following diagnosis. Both these doctor types were visited most commonly at least three times a (neurology 29%; Parkinson s 36%). Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 40% 35.6% 30% 27.3% 29.0% 20.6% Neurologist 20% 0% 3.7% 8.3% 7.6% 4.4% 7.6% 0.6% Parkinson's Specialist 3.8% 0% Monthly once a twice a 3 times a 0.8% 0.8% 0.0% Once in 8 months Once in 2 s Never This post-diagnostic care is shared with family doctors. Most (87%) PWPs saw their family doctor, most commonly monthly (4%). Almost half (47%) saw a hospital doctor, most commonly once a. This is the highest level of involvement of a Parkinson s specialist, not just in the region, but also in the entire study. 92

93 Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 4.% 7.7% 9.2% 9.%.4%.4% 9.9% Hospital Doctor 6.3% 22.3% 8.9% 9.8% 0.9% 3.6% 48.2% Neurologist 3.7% 7.6% 20.6% 29.0% 0.8% 0.8% 7.6% Parkinson s Specialist 8.3% 4.4% 27.3% 35.6% 3.8% 0.0% 0.6% Geriatrician.0% 4.% 0.0% 2.% 0.0% 9.3% 83.5% Parkinson s organisations and support groups Only a third (36%) of Italian PWPs claim to be members of a national Parkinson s organisation. This is a low total both in the region and in the survey generally. Almost two thirds (6%) said they were not members. A total of 0 PWPs (6%) of Italian responders believed there was no patient organisation in Italy. The topics of verbatim comments were very widely scattered. The only comment that featured commonly (in just over a quarter of comments) was that many PWPs did not know about the organisation. Those PWPs who were members of a national organisation rated the helpfulness of the information from that organisation very highly. Almost all (97%) found the information to be Very good or Good. Only 3% found it to be Poor. This was the highest score of all analysed countries in the region. Organisation services were also well thought of in Italy. Three quarters (72%) of Italian PWPs rated these services as Good or Very good ; only 8% ranked them as Poor or Very poor. Three quarters (76%) of Italian PWPs claimed they did not use a local support group, similar to the regional total. Among those who did, 2% used a local group and 7% used an online group. No one claimed to use an overseas group. 93

94 Malta Demographics Sixteen responses were analysed from PWPs in Malta (3% of Southern Europe and % of the total survey). Of these, 62% were male and 38% were female. The proportion of males was significantly higher than the overall European figure, but not atypical for Southern Europe. The youngest PWPs in Malta are aged (6%). 3% of Maltese PWPs are 80 and over. The most common age range was (44%). Although the lower end of the age range cuts off at an older age than the survey generally, the bulk of the PWPs in Malta are of a similar age to the general survey population. In Malta, 5% of PWPs were diagnosed between 99 and % were diagnosed between 2006 and % of Maltese PWPs were diagnosed since This is a relatively high proportion, compared to the survey generally, and also the highest of all analysed countries in the region. Time to diagnosis In Malta, just under two thirds (62%) of PWPs received their diagnosis within of consultation. Most of the remainder (3%) received a diagnosis in -2 s. No Maltese PWP has waited more than 3 s for a diagnosis. The overall time taken to diagnosis is shorter than the average of the general survey, and also the shortest in Southern Europe. 7.7% 0.0% Time to diagnosis 30.8% 6.5% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, only a few (5%) of PWPs in Malta had consulted one doctor about their Parkinson s symptoms. Most (77%) consulted two doctors before receiving a diagnosis. 8% had each consulted more than three doctors before a diagnosis was given. The Maltese therefore manage generally to diagnose Parkinson s within to 2 s, having involved two doctors. For further details, please see the Demographic Tables in Appendix. 94

95 Method of receiving diagnosis Almost three quarters (72%) of Maltese PWPs received their diagnosis from a neurologist. None received their diagnosis from a doctor specialising in Parkinson s, or a hospital doctor. Unusually, nearly a third (3%) received their diagnosis from a family doctor. This is the highest level of family doctor involvement in the entire survey. Who gave the diagnosis? 0.0% 69.2% 30.8% 0.0% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated Three quarters (75%) of Maltese PWPs were aware of a Parkinson s specialist in their country. 6% stated there was not such a specialist in Malta and almost one in five (9%) did not know. However, Parkinson s specialists are involved in post-diagnosis care. Almost all of Maltese PWPs (92%) received their diagnosis in person. The remainder (one individual) received their diagnosis by . 2 The majority of Maltese PWPs rated the way they were given their diagnosis positively, although the split is fairly even. Overall, over half (54%) thought this diagnosis was handled in a kindly way, while the remainder (46%) thought it was abrupt. The exclusion of Parkinson s specialists from the diagnostic period may be an artefact of the relatively small sample size in Malta. 2 Care should be taken when extrapolating from this finding, due to the small sample size. 95

96 Response to diagnosis 40% 30% 30.8% 23.% 20% 5.4% 5.4% 0% 7.7% 7.7% 0% Abruptly 0.0% 0.0% 0.0% 0.0% Kindly 0.0% Not stated Information available at diagnosis All the Maltese PWPs in the survey said they received some form of information at the time of diagnosis. Most of these (62%) PWPs received general information on Parkinson s following diagnosis. One respondent (8%) received detailed information, one respondent (8%) received medical information and one further respondent (8%) received information about support groups. Almost a third (3%) received information regarding a telephone helpline. Over two thirds (69%) of respondents rated the available information as Helpful or Very helpful. A quarter (23%) found it to be Of little help and the remainder did not answer. This is one of the higher (better) scores in the Southern region. Experience of diagnosis Maltese PWPs were fairly evenly balanced when assessing how well the diagnosis was handled, leaning slightly towards the positive. Just over half (55%) of Maltese PWPs were satisfied with how the diagnosis was given, rating this as Good or Very good. The rest (45%) rated this as Poor or Very poor. Few verbatim comments were left in the survey. Most were negative, and of these, the most common single description was shocked. Several PWPs had suspected a diagnosis of Parkinson s and many were relieved when it was confirmed. Follow-up visits In Malta, most responding PWPs (83%) saw a neurologist at some point following diagnosis and just under two thirds (62%) saw a Parkinson s specialist at some point following diagnosis. The most common frequency of these visits was twice a (38%) for Parkinson s specialists and once a (33%) for neurologists. 96

97 50% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 40% 33.3% 38.5% 38.5% 30% 25.0% 25.0% Neurologist 20% 5.4% 6.7% Parkinson's Specialist 0% 7.7% 0% 0.0% 0.0% Monthly once a twice a 3 times a 0.0% 0.0% 0.0% 0.0% Once in 8 months Once in 2 s Never Most PWPs (85%) also saw their family doctor, most commonly at least twice a (3%). 46% saw a hospital doctor, most commonly twice a (3%). Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 5.4% 5.4% 30.8% 23.% 0.0% 0.0% 5.4% Hospital Doctor 0.0% 5.4% 30.8% 0.0% 0.0% 0.0% 53.8% Neurologist 0.0% 33.3% 25.0% 25.0% 0.0% 0.0% 6.7% Parkinson s Specialist 0.0% 5.4% 38.5% 7.7% 0.0% 0.0% 38.5% Geriatrician 0.0% 23.% 5.4% 5.4% 0.0% 7.7% 38.5% Parkinson s organisations and support groups Nearly all 93% of Maltese PWPs in the survey (i.e. all but one) claimed to be members of a national Parkinson s organisation. This is the highest national membership throughout the region. Maltese PWPs did not leave any verbatim comments for this question. All Maltese PWPs who were members of a national organisation rated the helpfulness of the information from that organisation very highly. Two thirds (67%) found the information to be Very good while one third (33%) found it to be Good. Half of the Maltese PWPs used a local support group; the other half did not. 97

98 Slovenia Demographics Sixty-eight responses were analysed from PWPs in Slovenia (4% of Southern Europe and 3% of the total survey). Of these, 56% were male and 44% were female. The proportion of males was slightly higher than average for Southern Europe, but very close to the overall European figure. Ages ranged from (4%) to 80 and over (7%). 53% of Slovenian PWPs did not answer this question. The most common age range specified was (2%). In Slovenia, a few (2%) of the PWPs were diagnosed before % were diagnosed between 2006 and % of Slovenian PWPs were diagnosed since This is a low proportion, compared to the survey generally, and the lowest in Southern Europe. Time to diagnosis In Slovenia, around a half (56%) of PWPs received their diagnosis within of consultation. Less than a fifth (8%) received a diagnosis in to 2 s, with the remaining diagnoses spread across the periods between 2 and 5 s. Only 4% of PWPs (two individuals) waited more than 5 s for a diagnosis. Overall, three quarters (74%) of Slovenian PWPs received a diagnosis within 2 s. This is in line with the average time for Southern Europe. 4.4% 2.9% 4.4% Time to diagnosis 7.4% 7.4% 7.6% 55.9% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, just under half (46%) of PWPs in Slovenia had consulted one doctor about their Parkinson s symptoms. A further fifth (9%) consulted two doctors. Nearly one in five (8%) had each consulted more than three doctors before a diagnosis was given. This fits with the scattered time to diagnosis pattern seen above. 2 Method of receiving diagnosis Based on the survey answers (2% did not answer this question), Slovenian Parkinson s specialists are the most common source of diagnosis. Less than half (4%) of Slovenian For further details, please see the Demographic Tables in Appendix. 2 Of the remainder, 5% consulted three doctors; 2% did not answer. 98

99 PWPs received their diagnosis from a doctor specialising in Parkinson s. Only 2% received their diagnosis from a neurologist. 24% received the diagnosis from a hospital doctor, while 0% received their diagnosis from a family doctor. This is a very scattered pattern of diagnosis; the distribution of responsibilities is unique in the survey, the closest being Bulgaria in the Eastern European region. Who gave the diagnosis?.5%.8% 0.3% 4.2% 23.5% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated.8% Awareness of Parkinson s specialists is relatively low. Two thirds (69%) of Slovenian PWPs were aware of a Parkinson s specialist in their country. 7% stated they were unaware of such a specialist in Slovenia; a fifth (2%) did not know. Almost all (97%) of Slovenian PWPs received their diagnosis in person. 3% received the diagnosis by letter. The majority of Slovenian PWPs (94%) did not rate the way their diagnosis was handled (abruptly/kindly), therefore it is not possible to analyse this question. Information available at diagnosis Just over % of Slovenian PWPs in the survey (one individual) reported that they did not receive information when diagnosed. The remainder all said they received some form of information at this time. Three quarters (75%) of PWPs received general information on Parkinson s following diagnosis. 3% received detailed information, 5% received medical information and 2% received information about support groups. 2% received information regarding a telephone helpline. The overall level of information appears typical of the region. Almost three quarters (72%) of responders rated the available information as Helpful or Very helpful. Just 9% found it to be Of little help and the remainder did not answer. This is the highest score in the Southern region. Experience of diagnosis All Slovenian PWPs were satisfied with how the diagnosis was given, rating this as Very good. 99

100 Verbatim comments left by respondents were very varied in content. Negative comments predominated, ranging from describing the diagnosing experience as being negative to more specific feelings such as uncertainty about the future and shock or upset at receiving the diagnosis. There were several neutral comments which praised the way the diagnosis was given, but did not explore the feelings of the PWP themselves. Follow-up visits In Slovenia, the centre of post-diagnosis care is the family doctor. Almost all (95%) Slovenian PWPs see their family doctor, most commonly either monthly (33%) or three times a (33%). 40% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 40.0% 30% 3.4% 28.6% Neurologist 20% 0% 0% 2.0% 0.0% Monthly 2.0% 8.6% once a twice a 4.0% 4.3% 3 times a 8.0% 5.7% Once in 8 months.4% 0.0% Once in 2 s 4.0% Never Parkinson's Specialist Two thirds (68%) of responding PWPs also saw a neurologist at some point following diagnosis, mostly twice a (40%). Only half (54%) saw a Parkinson s specialist at some point following diagnosis. The most common frequency of these visits was twice a (3%). Just over a quarter (28%) saw a hospital doctor, most commonly twice a (6%). This high level of involvement of the family doctor is not unusual, but the relatively low frequency of specialist/neurologist contact is lower than in most countries. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 32.5% 0.0% 20.0% 32.5% 2.5% 2.5% 0.0% Hospital Doctor 4.0% 4.0% 6.0% 4.0% 2.0% 8.0% 52.0% Neurologist 2.0% 2.0% 40.0% 4.0% 8.0% 0.0% 4.0% Parkinson s Specialist 0.0% 8.6% 3.4% 4.3% 5.7%.4% 28.6% Geriatrician 5.0% 0.0% 0.0% 0.0% 0.0% 0.0% 85.0% Parkinson s organisations and support groups The great majority (8%) of Slovenian PWPs claim to be members of a national Parkinson s organisation. This is almost double the national membership in the region. This high level of 00

101 membership is shared with Spain, Malta and, to a lesser extent, Israel. 6% said they were not members and one individual was not aware of such an organisation in Slovenia. The remainder did not answer the question. Very few comments were entered. These mainly referred to a lack of information about the organisation and practical difficulties (remoteness). Most PWPs in Slovenia did not answer the questions regarding organisation information and services, precluding analysis. Over a third (38%) of Slovenian PWPs claimed they did not use a local support group. Among those who did use support groups, 5% used a local group and % used an online support group. 0

102 Spain Demographics Forty-one responses were analysed from PWPs in Spain (8% of Southern Europe and 2% of the total survey). Of these, 59% were male and 4% were female. The proportion of males was higher than the overall European figure, but very close to the regional figure for Southern Europe. Ages ranged from (7%) to 80 and over (7%). The most common age range was (27%). The age distribution is fairly evenly spread, but peaks at a lower age range than most other countries. In Spain, 2% of the PWPs were diagnosed before % were diagnosed between 2006 and % of Spanish PWPs were diagnosed since This is a relatively low proportion, compared to the survey generally, and also for Southern European countries; this is closer to the average in Eastern Europe. Time to diagnosis In Spain, just over half of PWPs (56%) received their diagnosis within of consultation and a further fifth (20%) received a diagnosis in to 2 s. 7% of PWPs waited more than 3 s for a diagnosis. The overall time taken to diagnosis is very similar to the average for Southern Europe. Time to diagnosis 2.2% 9.5% 7.3% 0.0% 4.9% 0.0% 56.% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, less than a third (29%) of PWPs in Spain had consulted one doctor about their Parkinson s symptoms. A further third (32%) consulted two doctors. Just under a third (29%) had consulted more than three doctors before a diagnosis was given. 2 This is similar to the regional performance. Method of receiving diagnosis Two thirds (66%) of Spanish PWPs received their diagnosis from a neurologist. Only one in six (7%) received their diagnosis from a doctor specialising in Parkinson s. 7% received their diagnosis from a hospital doctor. 7% received their diagnosis from a family doctor. These For further details, please see the Demographic Tables in Appendix. 2 The remaining 0% consulted three doctors. 02

103 numbers are consistent with the pattern in the Southern Europe region and are very similar to Italy. The remaining few individuals received their diagnosis from a doctor specialising in care of the elderly, a very uncommon event in the survey. Who gave the diagnosis? 7.% 2.4% 0.0% 7.3% 7.3% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 65.9% Over three quarters (78%) of Spanish PWPs were aware of a Parkinson s specialist in their country. A very small group (7%) stated there was no such specialist in Spain; 5% did not know. All Spanish PWPs received their diagnosis in person. The majority of Spanish PWPs rated the way they were given their diagnosis positively. Overall, a majority (6%) thought this diagnosis was handled in a kindly way, while just over half this number (37%) thought it was abrupt (2% did not answer). This is a typical score for the survey, and very similar to Greece. Response to diagnosis 25% 22.0% 20% 5% 4.6% 2.2% 2.2% 0% 7.3% 9.8% 9.8% 5% 4.9% 4.9% 2.4% 0% Abruptly 0.0% Kindly Not stated 03

104 Information available at diagnosis A small but significant minority (2%) of Spanish PWPs in the survey reported that they did not receive information when diagnosed. The remainder all said they received some form of information at this time. Half (5%) of PWPs received general information on Parkinson s following diagnosis. Over a quarter (29%) received detailed information. No one received medical information, but 5% received information about support groups. Only 5% received information regarding a telephone helpline. This is the lowest level of information availability of all analysed countries, both in the region and in the entire survey. Over half (58%) of responders rated the available information as Helpful or Very helpful. Over a third (39%) found it to be Of little help and the remainder did not answer. This is close to, but slightly lower than, the regional score. Experience of diagnosis Spanish PWPs were very evenly divided when considering how the diagnosis was given. Half rated this as Good, half rated this as Poor. This makes Spain the least satisfied country in the region. Many of the verbatim comments submitted to the survey were negative, referring to a negative experience, some specifically describing shock, upset, depression or disbelief. Many, however, were neutral in their assessment of the process and focused more on the need for more information. Follow-up visits In Spain, most (9%) of responding PWPs saw a neurologist at some point following diagnosis; two thirds (64%) saw a Parkinson s specialist at some point following diagnosis. The most common frequency of these visits was three times a for the neurologist (37%) and twice a for the Parkinson s specialist (30%). 40% 30% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 3.4% 30.3% 37.% 36.4% Neurologist 20% 0% 4.3% 9.% 8.6% 6.% 8.2% 8.6% Parkinson's Specialist 0% Monthly once a twice a 3 times a 0.0% 0.0% 0.0% 0.0% Once in 8 months Once in 2 s Never 04

105 Nearly all PWPs (88%) saw their family doctor, most commonly monthly (29%). Just over half (56%) saw a hospital doctor, most commonly twice a (24%). This is a very high level of involvement for the neurologist for this region, second only to Greece. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 29.3% 4.6% 7.3% 36.6% 0.0% 0.0% 2.2% Hospital Doctor 0.0% 7.6% 23.5% 4.7% 2.9% 0.0% 4.2% Neurologist 4.3% 8.6% 3.4% 37.% 0.0% 0.0% 8.6% Parkinson s Specialist 9.% 6.% 30.3% 8.2% 0.0% 0.0% 36.4% Geriatrician 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 00.0% Parkinson s organisations and support groups Most (88%) Spanish PWPs claim to be members of a national Parkinson s organisation. This is the second highest total in the region, after Malta. A small group (0%) said they were not members and the remainder did not answer. Four comments were left: two referred to practical difficulties (no local branch), one said it was too soon to join and one used an alternative organisation. Those PWPs who were members of a national organisation rated the helpfulness of the information from that organisation very highly. A large majority (89%) found the information to be Very good or Good. Only % found it to be Poor or Very poor. Regarding services from that organisation, most (72%) found the information to be Very good or Good. Again, only % found it to be Poor or Very poor. Half (5%) of Spanish PWPs claimed they did not use a local support group, a relatively low score for the region. Among those who did, the majority (39%) used a local support group and a few (7%) used an online support group. 05

106 Western Europe Demographics Seven hundred and nine responses were analysed from PWPs in Western Europe (34% of the total survey). Of these, 57% were male and 43% were female, close to the overall European gender split. Ages ranged from under 30 s (0%, one individual) to over 80 (5%), with 60 to 69 being the most common age range (42%). This is very close to the overall European age range, although there are slightly more PWPs in the range s of age. In Western Europe, 9 patients (%) were diagnosed before 980, while 808 (36%) were diagnosed between 2006 and 200, with a steady increase in the number of respondents over this time, echoing the general European pattern. The Western Europe sample contained the following national contributions: Percentage of total analysed in Western Europe Percentage of total analysed in Europe Number of forms Western Europe analysed Austria 25 4% % Belgium 84 2% 4% France 33 9% 6% Germany 2% % Luxembourg 79 % 4% Monaco 2 <% <% Netherlands % 6% Switzerland 38 5% 2% Total % 34% Time to diagnosis In Western Europe, three quarters (75%) of PWPs received their diagnosis within of consultation. A further group (4%) received a diagnosis in to 2 s. There is a slightly higher proportion of rapid diagnosis in Western Europe than in Europe generally. Longer time to diagnosis is less frequent in Western Europe than across Europe as a whole. For further details, please see the Demographic Tables in Appendix. 2 Not analysed at the country level due to small sample size. 06

107 4.2% 2.0%.4%.5%.0% 5.2% Time to diagnosis 74.7% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated When diagnosed, 40% of PWPs in Western Europe had consulted only one doctor about their Parkinson s symptoms. In total, over three quarters (78%) had seen either one or two doctors; a further 3% saw a third doctor. A small group (8%) had seen more than three doctors when diagnosed. PWPs in Western Europe tend to see slightly fewer doctors than in Europe as a whole. This may also be linked to the fact that they receive faster diagnosis. Method of receiving diagnosis Over three quarters (79%) of Western European PWPs received their diagnosis from a neurologist, with a further small group (2%) receiving the information from their family doctor. Only 5% received the diagnosis from a Parkinson s specialist, and 3% from a hospital doctor. This shows a slightly greater focus on neurologists than in Europe generally. Belgium, uniquely in Western Europe, saw 2% of diagnoses from Parkinson s specialists, whereas in all other countries these specialists accounted for between 0% and 5% of diagnoses. Western Europe has the highest rate of diagnosis from a family doctor (2%), but the lowest from a Parkinson s specialist (5%). % did not answer. 07

108 Who gave the diagnosis? 4.6% 0.6%.0% 2.2% 2.7% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 78.9% A large majority (79%) of Western European PWPs were aware of a Parkinson s specialist in their country, while only 8% answered No and 2% Don t know. This is almost identical to the European level of awareness. The remainder did not answer. In Western Europe, almost all (98%) of PWPs received their diagnosis in person, consistent with the rest of Europe. Western European PWPs reported very similar reactions to the way in which they were dealt with by doctors. The majority (6%) gave a positive score, peaking at a rating of 8/0 for kindly handling. Response to diagnosis 20% 8.0% 5% 2.4% 2.0% 2.2% 0% 9.0% 0.% 9.0% 5% 5.6% 5.8% 4.%.8% 0% Abruptly Kindly Not stated Information available at diagnosis Most (6%) PWPs received general information on Parkinson s following diagnosis (the same as in Europe generally). A further 26% received detailed information and almost a quarter (7%) report receiving medical information. This is better than the European average. Only one PWP in Western Europe reported receiving no information at all. Western Europe has the highest level of overall information availability in the survey. 08

109 The general level of satisfaction with the information given is very similar to the European average, with two thirds (66%) of those answering the question reporting that it was Helpful or Very helpful. Western Europe had the largest not stated group for this question, with 5% of respondents not providing an answer. Experience of diagnosis The assessment of how the diagnosis was given very closely follows the European pattern with the majority (55%) saying Good or Very good, and a minority (42%) saying Poor or Very poor. 2 In Western Europe there were fewer Very good responses than Europe as a whole, but more Good responses. In Western Europe, the verbatim comments reflected very closely the European situation. Over half of respondents reported a negative feeling when receiving their diagnosis. A small group (about a tenth of the comments) of those giving a negative response talked of poor or insensitive communications from the doctor at the time, while a similarly sized group referred to lack of suitable information or guidance. A quarter of respondents spoke of a positive experience, of which half were happy or relieved to know what the symptoms were. Follow-up visits Over a third (38%) of Western Europeans report that they have never seen a doctor with a special interest in Parkinson s in the 2 s following their diagnosis. 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 55.7% 50% 45.6% 40% 36.0% Neurologist 30% 20% 0% 0% 2.8% 2.5% Monthly 0.5% 6.4% once a 3.6% twice a 7.3% 3 times a 3.9% 0.7%.8% 2.7% 0.6% Once in 8 months Once in 2 s Never Parkinson's Specialist In Western Europe, almost all (97%) of patients saw a neurologist (36% twice and 46% three times a ), and a large number (84%) also saw a family doctor (28% three times a ) with regard to their Parkinson s. This is a greater frequency than in Europe generally. The remaining 34% of those answering the question found this information to be Poor. 2 3% did not answer. 09

110 Just under half (40%) saw a hospital doctor, while a slightly larger number (44%) saw a doctor with a specialty in Parkinson s. The neurologist therefore appears to be the lead speciality in Western Europe for the care of PWPs, supported by the family doctor. Western Europe follows a similar pattern to Northern Europe with high involvement from the neurologist, and high support from the family doctor. Parkinson s specialists play a smaller role in these countries generally. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 2.4% 6.2% 20.3% 28.3%.7% 5.5% 5.6% Hospital Doctor.8%.3% 2.7%.3% 0.6% 2.4% 60.0% Neurologist 2.8% 0.5% 36.0% 45.6% 0.7%.8% 2.7% Parkinson s Specialist 2.5% 6.4% 3.6% 7.3% 0.6% 3.9% 55.7% Geriatrician 0.7%.6% 2.0% 2.7% 0.0% 0.4% 92.7% Parkinson s organisations and support groups In Western Europe, most (89%) PWPs in the survey stated they were members of a national Parkinson s organisation, the highest scoring region in the survey. A small minority (0%) claimed not to be members, with % failing to answer the question. Of those who were not members of a national organisation, around a fifth said it was too soon for them (recent diagnosis), a similar number were not comfortable in group situations and around one in seven were not aware of such an organisation. Of those who were members of a national organisation, the vast majority (92%) rated the helpfulness of information as Good or Very good. Only 3% felt that it was Poor or Very poor. Similarly, three quarters (73%) of respondents found the services of the organisation to be Good or Very good. Just 4% said Poor or Very poor. In Western Europe, two thirds (65%) did not use a support group. Of those who did, the majority (27% of PWPs) used a local support group; 9% used an online group and % said they used an overseas group. The low level of support group usage is similar to that seen in Southern Europe. The remainder did not answer. 0

111 Austria Demographics Twenty-five responses were received from PWPs living in Austria (% of the total survey sample, 4% of Western Europe). 48% were male and 52% were female. This gender split has fewer males than the regional split and is closer to the Northern Europe age split. Ages ranged from (36%) to (4%). The most common age range was (56%). 92% of the Austrian PWPs were between 40 and 59 s of age, which is a more concentrated range than in Western Europe as a whole. Austrian PWPs were also more recently diagnosed than the general Western European sample, with 96% being diagnosed since 2000 (46% in ). Time to diagnosis Most (62%) Austrian PWPs were diagnosed within, and a further 7% within 2 s. One patient was diagnosed in each period 2-3 s, 3-4 s and more than 5 s. This is in line with Western European standards, and slightly better than Europe as a whole. Time to diagnosis 4.2% 4.2% 4.2% 6.7% 8.3% 0.0% 62.5% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated Most Austrian PWPs saw two doctors before diagnosis (46%), although nearly a third (29%) saw more than three. Only 3% saw only one doctor before diagnosis. 2 This relatively high number of consultations may reflect the healthcare delivery system of Austria more than anything else, as there does not appear to be a delay in diagnosis despite the increased rate on referral and consultation. Method of receiving diagnosis In Austria, just over half (58%) of patients received their diagnosis from a neurologist (significantly lower than in the remainder of Western Europe) and only one individual received the diagnosis from their family doctor. However, a relatively high proportion (2%) received their diagnosis from a Parkinson s specialist. In this, Austria stands out from the rest of the Western European region in that it is the only country to see more than 5% of For further details, please see the Demographic Tables in Appendix. 2 Of the remainder, 8% saw three doctors, 2% did not answer.

112 diagnoses given by Parkinson s specialists. In this regard, Austria shows a pattern more like Eastern Europe. Who gave the diagnosis? 0.0% 4.2% 20.8% 6.7% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 58.3% Most (88%) Austrian PWPs knew of doctors with a special interest in Parkinson s, the remaining 2% stating they did not know. No one said there was no such specialist in Austria. These results clearly indicate that Parkinson s specialists have a greater role to play in Austria in the diagnosis of this disease. All the Austrian PWPs received their diagnosis in person. Nearly four out of five (79%) felt they were dealt with kindly, scoring 6 or more out of 0. Four individuals felt that the diagnosis was given in a somewhat abrupt manner (scoring 3 or 4 out of 0). One individual gave a score of, indicating a very abrupt delivery of the diagnosis. Overall, this is slightly better than in Western Europe generally. Response to diagnosis 25% 20.8% 20.8% 20% 6.7% 5% 2.5% 0% 8.3% 8.3% 5% 4.2% 4.2% 4.2% 0% Abruptly 0.0% Kindly 0.0% Not stated 2

113 Information available at diagnosis Just over half (54%) of Austrian PWPs were given general information after diagnosis; a third (33%) were given detailed information. Two individuals (8%) were given medical information, and two more were given details of a telephone helpline. No PWP in Austria was left without any information at all. Most PWPs in Austria (79%) thought that the information given to them was either Useful or Very useful. 7% (four respondents) did not find the information useful. The response to information available at diagnosis in Austria is similar to the experience of Western Europe as a whole, given the relatively small sample size. Experience of diagnosis Despite the abrupt diagnosis rating above, all Austrian PWPs rated the way they felt about how they were given their diagnosis as Good. Of those who gave comments on how they felt when given the diagnosis, two thirds commented negatively (a third - shocked, a fifth - negative reaction, a sixth - upset/ depressed). Around one in six reported a neutral reaction, and one in five reported a positive reaction, of which over half were relieved to get a definitive diagnosis. These comments are very much in line with reactions in Western Europe as a whole. Follow-up visits Despite the apparent importance of Parkinson s specialists at the time of diagnosis, over a third (38%) of Austrian PWPs did not see this specialist in the 2 s following this event. 3% have seen a Parkinson s specialist three times a, and 9% twice a. 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 58.8% 50% 40% 30% 20% 0%.8% 6.3% 6.3% 8.8% 3.3% 29.4% 37.5% Neurologist Parkinson's Specialist 0% 0.0% Monthly once a twice a 3 times a 0.0% 0.0% 0.0% 0.0% 0.0% Once in 8 months Once in 2 s Never The remainder did not answer the question. 3

114 A greater proportion (59%) of Austrian PWPs sees a neurologist at least twice a. A further 29% see a neurologist at least three times a. Additionally, 29% report seeing a hospital doctor at least once a and 33% talk to their family doctor monthly. This indicates that there is some overlap in these data; patients visit more than one doctor to discuss Parkinson s. This is consistent with the multiple visits seen during the diagnosis process. However, in line with the trend across Europe, the neurologist still appears to be the most common individual in this treatment pattern. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 33.3% 9.0% 4.8% 23.8% 0.0% 0.0% 9.0% Hospital Doctor 0.0% 29.4% 7.6%.8% 0.0% 5.9% 35.3% Neurologist 0.0%.8% 58.8% 29.4% 0.0% 0.0% 0.0% Parkinson s Specialist 6.3% 6.3% 8.8% 3.3% 0.0% 0.0% 37.5% Geriatrician 0.0% 0.0% 0.0% 8.3% 0.0% 0.0% 9.7% Parkinson s organisations and support groups Two thirds (68%) of Austrian PWPs report themselves to be members of a national Parkinson s organisation and the remaining third (32%) say they are not members. Of the group who were not members, five individuals stated reasons; two felt uncomfortable in a group situation, two were involved with local self-help organisations and one was still working and did not want the help of an organisation at this time. Seventeen Austrian PWPs gave their reaction to the information provided by the Parkinson s organisation. The majority (88%) thought that this material was either Good or Very good ; the rest disagreed. A smaller majority (65%) felt that the services provided were either Good or Very good. Three individuals (2%) thought that the services were poor; however, three did not answer the question (2%). In Austria, a quarter (24%) of reporting respondents did not use a support group. Half the PWPs (48%) used a local support group; a majority (60%) used an online support group. A further 8% used an overseas support group. 4

115 Belgium Demographics Eighty-four responses were received from PWPs living in Belgium (4% of the total survey sample, 2% of Western Europe). 54% were male and 46% were female. This sample has slightly fewer males than the Western Europe region, but is similar to the overall gender split. Ages ranged from (3%) to 80 and over (%). The most common age range was (42%). This peak is lower than the regional average, giving a slightly younger PWP population in Belgium. 6% of Belgian PWPs were diagnosed between 986 and % were diagnosed between 2006 and 200. Overall, 66% of Belgian PWPs were diagnosed since Time to diagnosis Over three quarters (79%) of Belgian PWPs were diagnosed within, and a further % within 2 s. 5% waited more than 5 s for their diagnosis. A large proportion (89%) of Belgian PWPs were diagnosed within 2 s, exactly the same as the average for the Western European region as a whole and better than the survey average generally. 4.7%.2%.2% 3.5% 0.0% Time to diagnosis 0.6% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated 78.8% Just aver a third (37%) of Belgian PWPs received a diagnosis after consulting one doctor. A further third (33%) saw two doctors before diagnosis. 2% saw three doctors; 5% saw more than three. 2 Slightly more PWPs in Belgium saw multiple doctors than the average for the region. Method of receiving diagnosis In Belgium, Most patients (88%) received their diagnosis from a neurologist, the highest proportion of neurology diagnoses in Western Europe. Only 4% of Belgian PWPs received For further details, please see the Demographic Tables in Appendix. 2 3% did not answer the question. 5

116 their diagnosis from a Parkinson s specialist (typical for Western Europe, with the exception of Austria). 4% received the diagnosis from their family doctor; 3% from a hospital doctor. Who gave the diagnosis? 0.0% 2.4% 3.5% 3.5% 2.4% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 88.2% A majority (52%) of Belgian PWPs said they were aware of doctors with a special interest in Parkinson s. A sizeable minority (29%) said they were not aware of this and 9% did not know. Nearly all (93%) of Belgian PWPs received their diagnosis in person. An additional 4% received their diagnosis by telephone, % by letter and the remainder did not answer. The majority (60%) felt they were dealt with kindly, scoring 6 or more out of 0. A significant minority (39%) felt that the diagnosis was given in an abrupt manner (scoring 5 or less out of 0). Overall, this is very close to the total score for Western Europe generally. 20% Response to diagnosis 6.5% 5% 2.9% 2.9% 2.9%.8% 0% 9.4% 7.% 8.2% 5.9% 5%.2%.2% 0% Abruptly Kindly Not stated The remainder did not answer the question. 6

117 Information available at diagnosis Just under half (47%) of Belgian PWPs were given general information after diagnosis. A further fifth (9%) were given detailed information. 6% received medical information, and a further 2% received information on support organisations. A third of Belgian PWPs (34%) were given details of a telephone helpline. No PWP in Belgium was left without any information at all. Although everyone received something, this was the second lowest level of information (after Austria) in Western Europe. The quality of the information supplied in Belgium was not seen as being very high. Only 4% of PWPs in Belgium thought that the information given to them was either Useful or Very useful. Almost as many (35%) found it to be Of little help (24% did not answer). This was the lowest positive vote in the whole of Western Europe. Experience of diagnosis Belgian PWPs were no more positive about the way the diagnosis was handled. Only 29% rated this as Good, while the majority (7%) rated it as Poor or Very poor. Over half of the comments submitted to the survey were negative. Many were unqualified, but a few referred to being shocked or not believing the diagnosis. A few comments also described being relieved to have a definitive diagnosis. Follow-up visits Nearly all (98%) of Belgian PWPs saw a neurologist in the 2 s following diagnosis. The frequency of these visits was at least twice (45%), or three times a (37%). Only 38% saw a Parkinson s specialist, most commonly twice a (6%). Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 70% 60% 6.8% 50% 44.6% 40% 36.9% Neurologist 30% Parkinson's Specialist 20% 6.4% 0% 0% 0.8% 4.6% 5.5% 5.5% Monthly once a twice a 9.% 3 times a 0.0% 0.0% Once in 8 months.5%.8%.5% Once in 2 s Never A similar number (39%) saw a hospital doctor, most commonly either once or twice a. Nearly all (93%) of Belgian PWPs also saw their family doctor, most commonly monthly (34%). These family doctors, together with the neurologists, account for the majority of 7

118 Parkinson s care in Belgium. This is typical of Western Europe as a whole, although the level of family doctor involvement in Belgium is higher than the regional average. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 34.2% 0.5% 5.8% 32.9% 0.0% 0.0% 6.6% Hospital Doctor 6.8% 3.6% 3.6% 5.% 0.0% 0.0% 6.0% Neurologist 4.6% 0.8% 44.6% 36.9% 0.0%.5%.5% Parkinson s Specialist 5.5% 5.5% 6.4% 9.% 0.0%.8% 6.8% Geriatrician 0.0% 2.0% 0.0% 0.0% 0.0% 0.0% 98.0% Parkinson s organisations and support groups Almost two thirds (63%) of Belgian PWPs report themselves to be members of a national Parkinson s organisation and the remaining third (36%) say they are not members (% did not answer). Two PWPs stated that they believed there was no national organisation in Belgium. Several comments were received from the third who were not members. These comments were greatly varied. The most common themes were too soon to join after diagnosis, I do not have information about this organisation and I would not be comfortable in that situation. Each comment was left by four individuals, each group representing about a fifth of the comments left. Most (89%) Belgian PWPs who were members of a national organisation rated the information available from this organisation as Good (62%) or Very good (26%). Only 8% felt it was Poor. A majority (76%) felt that the services provided were either Good or Very good, while 9% thought that the services were poor. 5% did not answer the question. In Belgium, almost three quarters (7%) of reporting respondents do not use a support group. 2% use a local support group; 6% use an online support group. 8

119 France Demographics One hundred and thirty-three responses were received from PWPs living in France (6% of the total survey sample, 9% of Western Europe). 54% were male, 46% were female. This was close to the overall gender split in the survey, but contained a lower proportion of males than the Western European sample generally (which was higher than anticipated for males). Ages ranged from (36%) to 80 and over (8%). One individual outlier was under 30 s, one of two (the other one being in Italy) in the entire survey in this age range. The most common age range was (47%). This is slightly higher than the general Western European proportion in this age band, but generally the age range is similar in France to the rest of the survey. 2% (two individuals) were diagnosed in each of the periods before 980 and Only 4% were diagnosed between 986 and % were diagnosed between 2006 and 200. Only 47% of French PWPs were diagnosed after 2000, the lowest such proportion in Western Europe. This means that French PWPs are clustered in the middle range of disease duration, more so than in other countries, where more recent diagnoses are more prominent. Time to diagnosis Diagnosis of Parkinson s in France is quite rapid, with 79% (the highest proportion in Western Europe) being diagnosed within. A further 3% were diagnosed within 2 s. Only two patients (2%) had to wait more than 5 s. 92% of French PWPs are diagnosed within 2 s. This, together with Switzerland, is the highest proportion in Western Europe and the highest analysed country within the survey. Time to diagnosis 0.7% 0.0% 3.7%.5% 2.2% 2.7% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated 79.% For further details, please see the Demographic Tables in Appendix. 9

120 Most French PWPs saw one or two doctors before diagnosis (72%). Just 8% saw more than three. This is similar to the visit pattern for the whole survey, but the proportion of diagnoses made by one or two doctors only is slightly below that for the region. Method of receiving diagnosis In France, just under two thirds (65%) of patients received their diagnosis from a neurologist (a low proportion for Western Europe). Over a quarter (27%) received their diagnosis from a family doctor. This is a very high proportion of diagnoses from a family doctor, seen only in Malta and, to a lesser extent Luxembourg, throughout this survey. 2 The remainder of French PWPs received their diagnosis either from a hospital doctor (4%) or a Parkinson s specialist (3%). Who gave the diagnosis? 3.0% 0.7% 0.7% 64.9% 26.9% 3.7% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated The great majority (87%) of French PWPs knew of doctors with a special interest in Parkinson s; the remaining 3% stated they were unaware or they did not know. All French PWPs who answered this question received their diagnosis in person. In general, French PWPs felt they were dealt with abruptly when diagnosed. A majority (59%) scored 5 or less out of 0, indicating an abrupt approach, with half of these (24%) scoring /0. A smaller number (38%) scored 6 or more out of 0, indicating a kindly approach. These scores peaked at 8/0 (2%). This was the most critical set of scores in the region and also significantly more critical than the overall survey scores. Of the remainder, 6% saw three doctors, 4% did not answer. 2 Excluding countries with samples below 0, which have not been analysed. 20

121 Response to diagnosis 25% 23.9% 20% 5% 2.7% 4.2%.9% 0% 5% 4.5% 3.7% 6.0% 6.7% 9.0% 4.5% 3.0% 0% Abruptly Kindly Not stated Information available at diagnosis Just over half (54%) of French PWPs were given general information after diagnosis. A further 8% were given detailed information. 5% received medical information and % received information on support groups. A third (34%) were given details of a telephone helpline. No PWP in France was left without any information at all. The overall information level is in the middle of the regional scores, but similar to Eastern and Southern Europe. Just over half (54%) of PWPs in France thought that the information given to them was either Useful or Very useful. 7% did not find the information useful. The remaining 29% did not answer. The response to information available at diagnosis in France is similar to the experience of Western Europe as a whole, slightly below the regional level. Experience of diagnosis French PWPs were also critical of the way the diagnosis process was handled. A minority (46%) viewed this as Very good (8%) or Good (38%), while the majority (54%) rated the way they felt about how they were given their diagnosis as Poor (46%) or Very poor (8%). The majority of comments submitted to the survey were negative, and unqualified. Other comments referred to the need for practical information (around a fifth of the negative comments). Of the few positive comments that gave explanation, the most common theme was relief to receive a definitive diagnosis so that the PWP could move on. Follow-up visits Almost all (99%) French PWPs see a neurologist, at least three times a (42%). Nearly all (96%) also see their family doctor, also three times a (37%). 2

122 60% Visits to Neurologist/Parkinson's Specialist within 2 s of diagnosis 57.4% 50% 4.6% 40% 33.7% Neurologist 30% 20% 0% 0% 4.5% 2.9% Monthly 5.7% 8.8% once a 4.7% twice a.8% 3 times a 0.0% 0.0% Once in 8 months 3.4% 4.4% Once in 2 s.% Never Parkinson's Specialist Just over half (58%) see a hospital doctor, most commonly once a (9%). Only 43% see a Parkinson s specialist, most commonly twice a (5%). The high level of care from a family doctor is unusual both in the region and the survey in general. This is also seen in Switzerland. The hospital doctor also plays a larger role than usual. In this regard, France is similar to Austria. Monthly once a twice a 3 times a Once in 8 months Once in 2 s Never Family Doctor 22.6% 7.8% 25.2% 36.5% 0.9% 2.6% 4.3% Hospital Doctor 0.0% 9.2% 24.4% 6.4%.3% 6.4% 42.3% Neurologist 4.5% 5.7% 33.7% 4.6% 0.0% 3.4%.% Parkinson s Specialist 2.9% 8.8% 4.7%.8% 0.0% 4.4% 57.4% Geriatrician 0.0%.6% 0.0%.6% 0.0% 0.0% 96.7% As is seen in the case of diagnosing Parkinson s, the key roles in France are played by the neurologist and the family doctor. Parkinson s organisations and support groups Most French PWPs (85%) report themselves to be members of a national Parkinson s organisation. 2% say they are not members and 3% did not answer. Of the 2% who were not members, nine individuals left comments of varying nature. The only topics which occurred twice were the use of an alternative organisation, and the lack of knowledge of a national organisation. The French were much more positive about the value of information from the national organisation than they were about previous matters. Nearly all (98%) rated this information as Good (50%) or Very good (48%). Only % found this information Poor (% did not answer). 22

123 Again, a majority (77%) felt that the services provided were either Good or Very good. Again, % found these to be Poor. 22% did not answer. In France, almost two thirds (62%) of reporting respondents do not use a support group. 35% use a local support group and 2% use an online support group. A further % use an overseas support group. 23

124 Germany Demographics Eleven responses were received from PWPs living in Germany (% of the total survey sample, 2% of Western Europe). This is a relatively small sample size, which probably accounts for some unusual observations. 36% were male, 64% were female. The proportion of males answering the survey was the third lowest in the entire survey (after Lithuania and Romania); this is an unusually skewed sample in gender terms. Ages ranged from (9%) to (9%). The most common age range was 60-69, with 46% of German respondents in this category. 73% of the German PWPs were between 50 and 69 s of age. The German sample is concentrated more closely around this age range than either the general sample or the region. The German sample shows an unusual distribution of disease duration. 3% of German PWPs were diagnosed between 98 and 985. All the rest were diagnosed after 996, with 80% being diagnosed after 2000 (60% after 2005). This is a very high proportion of very recently diagnosed individuals. Time to diagnosis Around half (47%) of German PWPs were diagnosed within, and a further quarter (27%) within 2 s, meaning that 73% were diagnosed within 2 s. This is the lowest proportion in Western Europe (89% under 2 s), indicating slower diagnosis. 0.0% 6.7% 0.0% Time to diagnosis 20.0% 26.7% 46.7% Under - 2 s 2-3 s 3-4 s More than 5 s Don't know Not stated German PWPs also tended to see more doctors than their counterparts in the rest of Western Europe. In Germany, only 40% were diagnosed after visiting one or two doctors. 33% saw more than three doctors. 2 This is significantly below the regional performance. It is not possible to say whether this results from the small sample, or whether this may be a function of a high referral rate within the German health delivery system. For further detail, please see the Demographic Tables in Appendix. 2 27% visited three doctors. 24

125 Method of receiving diagnosis In Germany, most PWPs (80%) received their diagnosis from a neurologist, in keeping with the regional trend. None of the German sample received their diagnosis from a Parkinson s specialist. 3% of German PWPs received their diagnosis from a family doctor, and a further 7% from a hospital doctor. Who gave the diagnosis? 0.0% 3.3% 6.7% Family Doctor Hospital Doctor Neurologist Parkinson's Specialist Geriatrician Not stated 80.0% Only a third (36%) of German PWPs knew of doctors with a special interest in Parkinson s. 9% said they were not aware of such a specialist. Half (46%) stated they did not know and the remainder did not answer. All the German PWPs received their diagnosis in person. Less than half (40%) felt they were dealt with kindly, scoring 6 or more out of 0. The majority (53%) felt that the diagnosis was given in a somewhat abrupt manner (scoring 5 or less out of 0). This score is more critical than both the regional and overall survey scores. Response to diagnosis 20% 20.0% 5% 3.3% 3.3% 3.3% 3.3% 0% 6.7% 6.7% 6.7% 6.7% 5% 0% Abruptly 0.0% 0.0% Kindly Not stated 25