The Medically Unexplained Physical Symptoms Service first biennial service evaluation

Transcription

1 The Medically Unexplained Physical Symptoms Service first biennial service evaluation Data included is from August 2013 to August 2015.

2 Contents Introduction... 2 Methods for assessing outcomes:... 7 Results Discussion Action Points from the Review: Appendix A: Physiotherapy and occupational therapy: Appendix B: Chronic pelvic pain clinic

3 Introduction The medically unexplained physical symptoms (MUPS) service was commissioned as part of the liaison service expansion in Durham and Darlington. It has been functioning in its current form since August The service takes referrals from secondary care acute trust services. Medically unexplained physical symptoms account for 3billion of health resources every year and in The NHS Five Year Forward View a key priority is to reduce this cost by offering appropriate services and interventions for patients. Women with chronic pelvic pain spend on average in the UK 8 years going round various departments getting tests, investigations and tablets before dropping out of the system, dissatisfied. It take on average 8 years for a patient with non-epileptic attack disorder to be diagnosed, and in that time they will often have been on high doses of antiepileptics, lost independence and functioning and will often have developed co-morbid psychiatric illness. MUPS is a relatively new speciality. It has been known by various terms over the years, from psychosomatic disorders, to psychogenic symptoms, hysteria, conversion disorder, and most recently functional disorder. Although the concept of medically unexplained symptoms has been recognised since approximately 1870 (first described by Charcot), and well recognised in the first world war as a consequence of trauma, it unfortunately ended up out of mainstream medicine and relegated to the world of psychotherapy for many years. It has only really been in the last 15 years that people have started to seriously invest in research in this area to more fully understand aetiological and biological models of the disorder as well as the psychological aspects. There is limited research on treatment models and it must be recognised that not all MUPS conditions can be treated in the same way. For example, the consensus paper for patients with fixed functional neurological conditions, such as gait 2

4 disturbance, tremor or paralysis, requires input from physiotherapy whereas for voice disorders, joint work with speech and language therapists is key and for health anxiety systemic management is necessary. Our service is unique within the North East. Services for MUPS patients are patchy Durham and Darlington is well provided for with our service covering the whole area, Durham has a small additional service for patients with non-epileptic attack disorder, as well as the IAPT pathfinders project for patients with long term conditions across Durham and Darlington. However, some areas, such as Newcastle, have no service at all except health psychology in select departments within the RVI; Teesside is similar. A patient with a functional neurological condition in Middlesbrough will go on a 3 year waiting list to be seen; in Durham and Darlington they will be seen within 2 weeks by our MUPS service. Service Aims Our service aims to: 1) Improve the lives of these patients by offering a positive diagnosis and explanation for their symptoms, 2) Help them get to a point where their symptoms are reduced or resolved 3) If symptoms remain to empower the patient to manage their symptoms better themselves 4) In all cases we aim to improve quality of life and functioning. Service description The MUPS service comprises of 1 psychologist (0.9 WTE), a liaison nurse (0.8 WTE), psychiatrist (0.5 WTE) and 2 part time support workers (1.3 WTE). As it is a very small team operating across a large area (Shotley Bridge to Barnard Castle in the west and Seaham to Darlington in the east) we take patients with lower levels of risk as we cannot respond quickly to crises, nor do we have the resources to offer 3

5 intensive work. Very few of our patients present significant risk issues (except falls risk, see later) but for those that do we joint work with local community mental health teams to treat the patient. Referrals are discussed at the team meeting and if appropriate are scheduled for initial assessment within 2 weeks. There is no waiting list. Referrals may be rejected if the patient is out of area (as we are the only such service in the north east we often get requests to see patients from out of area). Furthermore we reject referrals if there have not been adequate medical investigations, if the patient is still having ongoing investigations or does not have medically unexplained physical symptoms. We only take patients over the age of 18. There is no upper age limit. We are commissioned for acute services. We do get referrals from secondary care mental health services. We are not commissioned for these but we will offer an assessment and opinion for these patients to assist the teams. Service Model Overview The service operates a stepped care model for patients. This model is based on a service model from Dr Jon Stone, Consultant Neurologist in Edinburgh, who is a national expert in functional neurological disorders. The stepped care model is used to ensure that the patient is given the most appropriate level of intervention in the most cost effective way. It also facilitates matching multidisciplinary skills to patient need. Step 1: Initial assessment and psychoeducation Patients are offered an initial assessment appointment which is most frequently done by the psychiatrist. This involves a screen for co-morbid mental health conditions then initiating, reviewing and rationalising medication as appropriate, as well as offering initial psychoeducation. At this point a small number of referrals (see Results) have been redirected to other services as the patients have been found to 4

6 have other significant problems such as psychosis or risk issues that require input from alternative services. Case example: Mrs C, psychoeducation Mrs C saw the liaison nurse for 2 sessions of initial assessment and psychoeducation. After this she experienced a dramatic improvement in symptoms, felt empowered to explain things to her family and get on with my life. Miss B had an initial assessment with the psychiatrist that included psychoeducation. Initial symptoms were that she was unable to walk without a crutch due to loss of sensation in her leg and seizures, low mood and suicidal thoughts. The next session she came back, dramatically improved, able to walk normally, mood normal, with seizures reduced from several times a day to once in 2 weeks. She had recognised that she was stressed by her lifestyle, made a crucial change and this had resolved everything. Step 2. Brief psychological intervention +/- support worker intervention Following this the next step would be a cognitive behavioural therapy informed approach usually delivered by the liaison nurse or psychiatrist. There is often additional input alongside this from one of the support workers to help the patient to improve levels of functioning e.g. improving the range of activities, returning to independent travel and increasing confidence. This work is based on a CBT model or uses behavioural activation approaches to augment the treatment. Some patients will leave the service following this intervention. For others, this intervention is a necessary step before embarking on more complex psychological interventions, and is used as a way to stabilise and scaffold the patient so that they are able to engage in more in depth psychological interventions safely. 5

7 Both support workers are also trained in delivering The Pain Toolkit. This is a guided self-help booklet for people who live with persistent pain written by a pain rehabilitation specialist and an expert by experience. For patients with chronic pain they work through the booklet with them, looking at a range of skills to manage chronic pain. This includes acceptance that the pain is present, grading and pacing activity, setting goals plus stretching and relaxation skills. Case example: Mrs S, support worker intervention Mrs S had functional neurological pain in her leg. Our support worker worked with her to grade and pace activities, slowly increase her level of exercise, get her to go to hydrotherapy where she increased her social circle, encouraged her to plan pleasurable activities in the week. Over time pain reduced, use of pain medication reduced, mood improved, exercise tolerance improved and Mrs S felt more empowered to deal with her pain day to day and her quality of life was improved. Step three: high intensity psychology. This level is required by the minority of patients (about a third) but is a key step for those that need it. Trauma is an aetiological factor in about two thirds of our patients. Our liaison nurse offers bereavement counselling, which is key in the aetiology for a significant group of patients. Our psychologist uses a range of psychological approaches including EMDR to treat trauma; EMDR can also be used to treat the symptom itself. Case example: Mr H, high intensity psychological intervention Mr H had a severe functional voice disorder. The psychologist treated him with EMDR across five key traumas in his life. As each one was treated, his voice improved, in a stepwise progression, until it was back to normal. As well as this she worked with him on how to ensure he was acknowledging and expressing emotions helpfully, instead of ignoring them, which had allowed them to build up 6 and be expressed through MUPS. This was important to prevent relapse in the future.

8 Step 4: Systemic approaches Some of our complex patients, often those with health anxiety, are frequent attenders at the GP surgery, secondary care or A and E. For these patients systemic approaches across healthcare are necessary to ensure that the patient is contained and not made worse by repeated unnecessary investigations and treatments. Case example: Systemic management Mrs D had severe health anxiety. She had home visits from the GP 1-2 times a day, called ambulances several times a week, and was getting referrals and investigations in three different acute specialities. We worked with the community mental health team, GP, ambulance service, A and E and liaison services to implement the following plan: Once a week visit to the GP for 10 minutes, no home visits; for the ambulance service and 111 to refer on to the Trust Crisis Team; if she went to A and E she was immediately seen by liaison. This contained the condition, such that it did not deteriorate, and small improvements were made, with considerable savings to healthcare, and reduction in risk to the patient from iatrogenic harm. Methods for assessing outcomes: The number of referrals into the service over the last two years and the outcomes of the referrals has been recorded and is presented in the results section. For those patients who have been assessed and referred on to other services we have recorded where they have been referred to. Data has been recorded and collated on 7

9 the primary reason for referral by symptom to our service to work out what are our primary symptom presentations, which then informs the direction of service development. There are no specific standard outcome measures for MUPS. This has been recognised on a national level and work is being done to try and develop better measures. As such we have used a variety of standardised outcome measures across physical and psychological domains. It is recognised that for some of these patients standard measures such as the PHQ-9 and GAD-7 can show no change or even increase, as patients often do not initially recognise distress (this is one of the reasons why they have functional symptoms) and as a result as they improve functionally occasionally these measures increase. A pack of questionnaires is given to patients on admission and discharge which include the following: 1. Generalised Anxiety Disorder Assessment [GAD-7] for anxiety 2. Patient Health Questionnaire [PHQ-9] for depression 3. Patient Health Questionnaire [PHQ-15] for somatisation disorder 4. Brief illness perception questionnaire [BIPQ] this measures how the patient perceives their illness across a variety of domains, the overall score measures levels of threat perceived by the illness. 5. EQ-5D measures overall health status 6. Dissociative experiences questionnaire-ii (DES-II) to screen for dissociative disorders. 7. Short Warwick Edinburgh Mental Well Being Scale [SWEMWBS] wellbeing measurement. Completed standard outcome measures [SOMs] were analysed using Excel. Analysis included the use of t-tests to assess whether changes seen were statistically significant. The largest group of patients are those with non-epileptic attack disorder. An additional in depth analysis and service description has been done for this group as they have a particular model of treatment (group psychoeducation) the outcomes of which we wanted to assess separately to inform future work in this area. This has 8

10 been done separately to this document. We also have a further additional separate analysis of patients with chronic pelvic pain as again a different service model is applied to these patients. (see Appendix B) Finally data has been collected on current patients who would benefit from physiotherapy and / or occupational therapy as this has been requested as part of the data needed for service development purposes. (see Appendix A) 9

11 Results Patient flow through service Total number of referrals 254 How many accepted 235 Declined 19 Pending 18 Completed initial assessments 200 Patient never assessed 17 Completed treatment 53 Ongoing treatment 68 Dropout 47 Refer other services 32 SOMS incomplete 20 SOMS complete 33 There have been 254 referrals of which 235 were accepted and 19 declined. 200 have completed initial assessments with 17 patients not attending or declining initial assessment and 18 pending. 53 patients have completed treatment of which 33 have completed before and after standard outcome measures (SOMs) data. 68 are in ongoing treatment, 47 have dropped out and 32 have been referred to other services after initial assessment. 10

12 Number of patients Percentage drop out rate Patients who drop out of treatment Drop out rates by year 30% 25% 20% 15% 10% 5% 26% 20% 15% 0% Year 2013 Year 2014 Year 2015 Figure 1: Number of patients who dropped out by year This indicates that the number of patients who drop out of treatment with our service has decreased year on year, with 10/38 patients dropping out in 2013 (26%), 21/105 patients in 2014 (20%) and 7/47 in the first eight months of 2015 (15%). Referral to other services after assessment Onward destinations of patients who are not appropriate for MUPS Figure 2: Destinations of patients referred on This graph demonstrates that the majority of patients who are not appropriate for MUPS get referred to adult secondary care mental health (psychosis or affective 11

13 Number of patients teams) or IAPT, with the rest being referred over a fairly even spread across a range of services based across acute services and other secondary care mental health. Referral Reasons Primary reason for referral Figure 3: Primary referral reason Figure 3 indicates that the majority of referrals (68, which is 33%) are for paroxysmal or episodic functional neurological diorders, such as non-epileptic attack disorder. Fixed functional neurological disorders such as paralysis account for 51 referrals (25%), followed by 34 referrals to the chronic pelvic pain part of our service (17%), 20 referrals for patients with pain (10%) and 14 for health anxiety (7%). The rest are spread across a variety of presentations. Screening for co-morbid mental health conditions On admission to the service the GAD-7, PHQ-9, PHQ-15 and DES-II are used to screen for anxiety, depression, somatisation disorder and dissociation respectively. Results are given in Table 1 below: Screening Questionnaire GAD-7 PHQ-9 PHQ-15 Mean score on admission 13 (moderate anxiety) 14 (moderately severe depression) 15 (Severe somatisation disorder) 12

14 DES-II 22% scored positively for dissociative disorder Table 1: Mean scores for mental health conditions on admission These results demonstrate that there are high levels of co-morbid mental illness in this cohort on admission to the service, with the average patient scoring for moderate anxiety, depression and severe somatisation disorder. 22% of patients scored positively for dissociative disorder on the DES compared to 5.4% of the general population. Clinical outcome measures For the patients who completed both pre-treatment and post treatment SOMs (n=33) results were as follows: Pre treatment mean Post treatment mean Statistically significant? GAD Yes p<0.01 PHQ Yes p<0.01 PHQ Yes p<0.01 SWEMWBS Yes p<0.02 EQ-5D Yes p<0.05 BIPQ Yes p< DES-II 13/58 (22%) patients were positive for dissociative disorder 2/22 (9%) patients were positive for dissociative disorder Table 2: Pre- & Post-treatment mental health scores This data demonstrates statistically significant improvements in the following: Anxiety, as rated by the GAD-7, reduces from moderate (mean score of 11.9) to mild (mean score of 7). This is a statistically significant reduction (t=3.32, p<0.0007). Depression as rated by the PHQ-9, reduces from moderate (mean score of 14) to mild (mean score of 7.6) and this is a statistically significant reduction (p<0.01). Somatisation disorder, as rated by the PHQ15, reduces from severe (mean score of 15) to mild (mean score of 9.7) and this is a statistically significant reduction in somatisation disorder (p<0.01). 13

15 Mean score on measure The data from these three measures is captured in Figure 4 below: Pre- & Post- Mental Health Measures Results Referral Discharge Referral Discharge Referral Discharge GAD-7 PHQ-9 PHQ-15 Figure 4: Selected pre- & post-treatment mental health results Dissociative disorder is scored positively by patients scoring an average of 36 or over on the dissociative experiences scale. In the pre-treatment group 22% (13/58) of patients scored positively for dissociative disorder, in the post treatment group only 9% (2/22) did, although numbers are very small. This data is not matched. The EQ-5D is a standardised measure of health status including a self-rated visual analogue scale where patients rate their health from zero [worst health] to 100 [best health. Rating on this measure this improved from 53/100 to 64/100, giving is a statistically significant improvement in health status as rated by the patient (p<0.05). The SWEMWBS is a measure of general wellbeing and a higher score denotes better wellbeing. This did improve from 20 to 23 and was statistically significant (p<0.02). The Brief Illness Perception Questionnaire [BIPQ; Broadbent, 2005] is an eight question evaluation tool that ascertains a patient s perception of their illness across a number of different domains, e.g. the consequences of their illness, sense of 14

16 personal control over the illness etc. The total score across these domains also gives a measure of overall perceived illness threat. Scores are out of 10. For five of the eight questions (domains a) a lower score denotes improvement. On three questions (domains b), a higher score is indicative of improvement; these items were reverse scored when calculating the total score. 29 patients completed the pre and post BIPQ. There was a highly statistically significant improvement in the overall scores on this measure from 54.7 to 39.2 (p<0.0001) by time of discharge from service. This indicates a significant reduction in how threatening patients perceived their symptoms or illness to be. The BIPQ also gives useful information about changes across individual domains regarding patients views of their symptoms. This data is represented in the graphs below. Figure 5 shows the domains where a lower score represents improvements and Figure 6 the inverse: 10 BIPQ: Outcome data across domains (positive score items) At Referral 4 At Discharge Consequences 2. Timeline 5. Identity 6. Concern 8. Emotions Figure 5: BIPQ outcome data (positive score items) The first domain, Consequences, captures patients perceptions about how much their symptoms affects their life. There is an average reduction from 8.0 to 5.2, where 10 is severely affects my life and 0 is no affect at all. The data (p<1.68e-06), indicates that overall they view their life as much less affected by their symptoms by 15

17 the end of their treatment. Timeline indicates how long a patient thinks their illness will continue with 10 being forever and 0 a very short time. There was a statistically significant reduction (p<0.01) in the amount of time the patients thought that their illness would continue with a reduction from 8.2 to 6.7. Identity measures how much patients experience symptoms from their illness, with 10 being many severe symptoms and 1 being no symptoms at all. Again there was a statistically significant reduction in the number and severity of symptoms with a reduction from 7.7 to 5.6 (p<0.0004). Concern about illness is a domain which shows a particularly significant reduction from 7.9 to 5.1 (p<0.0001). In this domain 10 is extremely concerned and 0 is not at all concerned. Emotions measure how much the patient perceives that their illness affects them emotionally, where 10 is extremely affected emotionally and 0 is not at all affected emotionally. There was a statistically significant reduction in how much the illness affects the patients emotionally from 8.3 to 5.7 (p<0.0004). BIPQ: Outcome data across domains (reverse score items) Personal Control 3. Treatment Control 7. Illness Coherence At Referral At Discharge Figure 6: BIPQ outcome data (reverse score items) In Figure 6 Personal control rates how much control do you feel you have over your illness, with 0 being absolutely no control and 10 being extreme amount of control. There was not a statistically significant improvement in this domain with an improvement from (p<0.08). Treatment control rates how much do you think your treatment can help your illness with 0 being not at all and 10 being extremely helpful. There was a statistically significant improvement in this domain 16

18 from 5.75 to 7.75 (p<0.001). Finally illness coherence rates how well do you understand your illness with 0 representing don t understand at all and 10 understand very clearly There was a statistically significant improvement in this domain from 4.9 to 6.7 (p<0.01). Discussion Clinical outcome measures The outcome data discussed must be considered with the caveat that the numbers of patients who completed both pre- and post-treatment measures is relatively small at this stage. Notwithstanding this, it offers a useful initial insight into the outcomes the MUPS service produces for these patients. Mental Health and Wellbeing Patients referred into our service score moderately highly on measures of somatisation disorder, anxiety and depression. Previous evaluation by our service has indicated that prior to referral into service only approximately half of patients had a diagnosis of anxiety or depression. This may be linked to how patients talk about their symptoms with healthcare providers, with a focus on physical symptoms and less acknowledgement or awareness of psychological ones. However, given this hidden tendency towards anxiety and depression, it is important that treatments target these disorders specifically, given the potential role of anxiety and depression in the patient s overall presentation. Key Point Following intervention with the service, there are statistically significant reductions in levels of anxiety, depression and somatisation disorder and a concomitant improvement in self-rated wellbeing and health status. The proportion of patients suffering from dissociative disorder also reduced. 17

19 While we cannot state causality there are a number of interventions which are likely to have contributed to this reduction. A number of patients appear to have benefitted from the initial assessment and psychoeducation, as seen with the case study patients Mrs C and Miss B. Post-assessment, a number of patients are started on an antidepressant to good effect. This group of patients have appeared to respond best to duloxetine, a selective serotonin and noradrenaline reuptake inhibitor antidepressant that was originally licenced for patients with depression with somatic features. Other patients were offered cognitive behavioural therapy informed interventions as referred to in the introduction. The purpose of these is to improve patterns of anxious-avoidance or other limited activity levels such as linked to pain. In essence this work rehabilitates the patient back to a more normal way of life as many of them start in our service having vastly reduced their premorbid level of functioning. Such work was carried out with Mrs S in the case study above. A smaller number of patients (approximately one third) receive targeted psychological interventions for complex mental health disorders e.g. posttraumatic stress disorder, like Mr H in the case study above. It is likely that this combination of interventions, matched to patient need, contributed to the improvement in their mental health and wellbeing. Health perceptions It has long been recognised that patient s beliefs or perceptions affects adjustment and outcome independent of objective measures of symptom severity (e.g. Weinman et al 1997; Petrie et al 2007). Our data from the Brief Illness Perception Questionnaire [BIPQ], supports this idea. As mentioned above, all areas except for personal control showed a significant improvement at point of discharge. However, the largest shift was seen in the domains which capture the ways that people perceive their symptoms: concern, emotional representation and consequences in summary the patients report that the symptoms impact less on their lives and emotions and they are less concerned about them. This is an interesting finding given that other domains show a less dramatic reduction. For instance, the domain Timeline elicits perceptions of how long patients think their symptoms will continue, 18

20 and while there is a significant reduction, scores remain relatively high. There is a similar finding with regards to Identity, which covers severity of symptoms. The finding that the domain of Personal Control over symptoms did not show a statistically significant improvement although patients reported other improvements suggests that this may be less important than initially assumed. Further exploration of any differences within patient groups may help our understanding of this result. Interestingly, Illness Coherence, a domain that captures understanding of symptoms, showed a greater improvement (t=-2.31; p<0.01). The domain Treatment Control had an unexpectedly high baseline score. It is hypothesised that this is due to the questionnaire being administered following initial assessment, a point at which the patient has been listened to, their experiences validated and a sense of therapeutic optimism instilled by the assessor; this may have biased the results. It has been discussed whether a more accurate baseline measure would be obtained if the measures were sent out prior to initial assessment. However this has to be balanced with the risks of reducing engagement with the service, particularly given the potential for some uncertainty or ambivalence about a referral to mental health services. Key Point These findings suggest that patients may be finding ways to live well even with symptoms. It appears that even if patients continue to be symptomatic the symptoms have less impact on them day to day. This is congruent with data from interventions for other longer term conditions, e.g. psychosis (e.g. Petrie et al 2008) and cardiac rehabilitation (e.g. Jonsbu et al 2013). Summary of outcome measures Of those who have completed treatment and completed the standard outcome measures, patients have a statistically significant reduction in scores on depression, 19

21 anxiety, somatisation disorder, dissociation and improve on how they rate their health and how they perceive their illness. There is also a range of soft data that is not captured. Standard outcome measures for MUPs is a national problem in terms of what best to use as there is not anything that truly reflects improvement. Focus groups are sometimes used to get qualitative data from patients and these can pick up on factors that are less quantifiable. So, for example, many of our non epileptic patients (66%) come to us and they do not go out independently at all. By the end of treatment almost all do. This is a significant improvement in terms of gaining independence and life skills, but is not reflected in the data we capture. Also physical symptoms improvements are not captured. These are often not as good as we would like due to the lack of physiotherapy and OT within our service but because we have no good data capture on this it is difficult to provide data for a business case. Non-clinical patient outcome data In two years we have had 254 referrals. The majority (58%) of referrals come from neurology. Referrals that are declined: 7.5% of referrals are declined. This is because those patients do not meet eligibility criteria. The main factors are that the patient is out of the commissioning area, under 18, does not have a clear diagnosis of MUPS or are having ongoing tests and investigations. Referrals where the patient is never seen: 6.5% of patients are never assessed as they do not wish to be seen by our service. It is likely that the problem here may lie with the referrer as not all referrers are skilled in talking to patients about MUPS. We have noticed significant variation in how patients present to the service depending on who has referred them. For example, some are very angry that the referrer has told them it is all in the mind 20

22 whereas some are very positive about the referral and come with a good understanding of what functional symptoms are. This comes down to wider referrer education needs. Health Education North East and the Academic Health Sciences Network are doing work to address this but as a service we could increase opportunities to speak at educational events to improve standards of referrals. Referrals to other services: 12.5% of referrals go to other services following initial assessment. The most common referral destination is the psychosis team, followed by IAPT and then the affective team. The secondary care destinations suggest that a number of patients who are referred to our service are living with significant but undiagnosed mental health problems. This finding supports our model that the patients are initially assessed by the consultant psychiatrist in the majority of cases, as this is a significant group of patients who have alternative diagnoses or risk issues that require CMHT input. We have a good working relationship with Allison Bell, the project lead for the IAPT persistent physical symptoms pilot in this Durham and Darlington area. We refer on some patients who require pure CBT only, or whose lifestyles are such that they choose to work with the telephone contact computer based IAPT model, which is more flexible around work. Similarly, some of the complex patients that IAPT see they refer to us. These transfers of referrals happen between services, we do not put the onus on the referrer to do this. Patients who drop out of treatment 18.5% of patients drop out of treatment. This is lower than expected. Although there is very little comparison data as few MUPS services exist, we had heard from other services of dropout rates of up to 50%. It is difficult to know why these patients drop out and whether they have improved as there is no way of capturing this data. We think that some patients improve and then, because of their improvement, do not come back. For example in the case of Miss B who improved dramatically after one session of psycho-education (see above) although we offered her further support she dropped out of follow up and moved away. Based on her presentation at her second appointment, this appeared to be because she had recovered and no longer 21

23 needed our service. We have had other cases where patients drop out and are later referred back still unwell. We also know that for some patients they drop out because they cannot accept a MUPS diagnosis or do not like the treatment we have to offer; this often goes back to the problem of how they were initially referred. Patients who have outstanding physical tests and referrals also tend to drop out, which is why it is an exclusion criteria for our service. These are best guesses about reasons for drop out, based on anecdotal experience; we do not have any data. We also know that due to the lack of skills mix within the MUPS service, in that we do not have OT or physiotherapy (or psychosexual therapy for the chronic pelvic pain patients), sometimes the treatments we have are limited and patients may feel frustrated at the lack of progress in terms of symptom improvement. Working with community OTs and physiotherapists often delays treatment significantly, and it can be unsuccessful as they have limited skills in this area. One positive outcome is that year on year dropout rates are reducing: 26% in 2013, 20% in 2014 and 15% in This may be because the referrals we are getting are more appropriate or that the quality of the service we offer is better. We have changed the service model so that most patients see a consultant at initial assessment and there is independent data from many services that suggests that this increases patient satisfaction, which may be another reason why dropout rates are falling. Patients who have completed treatment and not completed standard outcome measures: Within this evaluation, 38% of patients have not completed either pre- or posttreatment [or both] patient rated outcome measures. These standard outcome measures (SOMS) are most often not completed because the patient unexpectedly improves, completes treatment and service involvement ends at a point not previously planned, meaning the therapist has not brought a discharge SOMS pack to the appointment or forgets to give it out. There has been a very low return rate when the packs are posted out, which is in line with questionnaire returns in research. Giving them to patients to complete and bring back also tends to result in 22

24 a lot of missed SOMS (we are told they are often left on the dining room table!). We have found that the only reliable way to get SOMS completed is to do them in session. Capturing a broader data set for patients who complete treatment: These patients demonstrate a statistically significant improvement in symptoms across the range of patient rated outcome measures in the SOMS questionnaires. However, we also see improvements that we have not captured, most notably economic data i.e. the impact on other services. This is data which is important to capture for commissioning purposes, however it is not clear how we do this. There are economic health questionnaires, but these require a licence. This data is also relatively subjective. If we were to manually trawl data we would need to employ a research assistant specifically for that role, it would be beyond the capacity of the staff within our service. We are considering the addition of the Work and Social Adjustment Scale which will capture some, but not all, of this missing data. Service specificity questions: There are arguments both for and against the generalist MUPS service model as adopted by our service rather than a service which exclusively focuses on one component of MUPS symptoms. One argument against generalist services is that they may not enable the development of sufficient expertise to successfully treat complex patients. However, there are a number of arguments against this perspective, from this initial evaluation. Firstly, our data indicates that the majority of our patients often have co-morbid phsyical symptoms, with most having a degree of pain, fatigue etc and/or a range of functional symptoms. Very few patients have one symptom only. This is demonstrated by the high scores in the PHQ-15 which rates patients for a range of symptoms to diagnose somatisation disorder. Patients with this level of complexity benefit from a service which can acknowledge and respond to the breadth of their symptomatology. 23

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26 Action Points from the Review: 1. To update our information leaflet to have clearer eligibility criteria and send out to referrers whose referrals we have to decline to improve the appropriateness of the referrals that we receive. 2. To work with medical education departments to get MUPS on the programme to upskill clinicians so that there are improved initial conversations with patients prior to referral. Working with the Academic health sciences network to develop resources for doctors and patients is also going to be key. Getting commissioners on board with this is vital for supporting this work with funding. 3. To work on developing patient information leaflets to ensure patient expectations of the service are accurate, which may produce a cohort of patients more informed about whether they wish to engage and less likely to drop out. 4. To ensure that therapists always carry extra SOMS packs with them to complete with the patient in session. To consider a visual prompt on patient notes to remind therapists to give the SOMS out. The aim of this is to improve the number of completed standard outcome measures. 5. To develop a business case for OT and physiotherapy to improve the quality and cost effectiveness of our service as well as improving patient satisfaction and the range of evidenced based interventions that we can offer. 6. To consider a formal research project of qualitative data through focus groups. 25

27 Appendix A: Physiotherapy and occupational therapy: Introduction Following on from the above action points the need for physiotherapy and occupational therapy in our current caseload was considered and a review of need carried out. The key points are as follows: As a MUPS service we do not have physiotherapist or OT in our team and are reliant on whatever resources exist in the community. This presents problems for the following reasons: o Many OTs and physiotherapists in the community are not familiar with this area of work and are either not confident in treating our patients or decline to treat them at all. o It is very difficult to coordinate joint work with the patients. When we offer to do joint work the physiotherapist or OT will often see the patient without us and then discharge after a one off assessment. o Commissioning arrangements dictate that in some areas OTs and physiotherapists will only offer a limited number of treatment sessions which is rarely enough for our patients. o At times when we have urgent risk issues (such as falls or domestic risk) we cannot get community OT/ physiotherapist to respond in a timely manner. A large proportion of our patients have fixed functional neurological disorders (tremors, paralysis, gait disturbance, dystonias etc). The consensus guidelines for these patients, which was published at the end of last year (Nielsen et al 2015) is that physiotherapy treatment is a necessity as part (or all) of the treatment. Many of these patients also require OT as well to complement this. Another large proportion of our patients have paroxysmal functional disorders (non epileptic attack disorder for example) and two thirds of them have lost their independence because of this so OT is crucial for structuring 26

28 rehabilitation for them. Many also have falls and domestic risk as well which again requires OT assessment and treatment. Many patients have co-morbid fatigue and pain and require physiotherapy to construct graded and paced activity plans to improve conditioning and reduce fatigue and pain. Most are frightened of doing too much and therefore reduce movement which increases pain and fatigue and physiotherapy is needed to instil confidence and put together treatment regimes to improve this. Case Example 1 An 81 year old woman had a loss of confidence in walking following functional neurological episode such that she would only walk when leaning heavily on a rollator frame. She had six weeks of OT and physio with the RIACT team, jointly with MUPS staff. She improved significantly. They finished their intervention at that point (they only intervene for 6 weeks) and would not see her for longer. This led to relapse and return to previous level of functioning. We are unable to get this patient longer term physiotherapy which she needs to build her walking confidence and therefore we cannot treat her. Case Example 2 A 42 year old woman with functional neurological disorder had repeatedly fallen down her stairs. There were significant associated risks of injury with this. We requested urgent community OT assessment. It took 2.5 months to get an initial assessment. She was referred for admission in this time to a psychiatric ward to manage this risk as there was no other way of doing it. 27

29 Method A cross sectional assessment of our current caseload at a set date was carried out to ascertain which of our patients would require OT and physiotherapy and for what reason, were it to be available. Results At the date of assessment (12/08/15) our current caseload was 57. This caseload was broadly representative of our usual clinical caseload. Therefore clinical need for OT and physiotherapy interventions identified in this review is likely to be representative of the routine needs of our patients. The results are given in the tables below. Some patients required both OT and physiotherapy, some needed it for more than one reason. Physiotherapy Area of intervention Percentage of caseload Treatment of Functional neurological disorder 22 (39%) Treatment of Functional Respiratory disorder 1 (2%) Treatment of Pain 26 (46%) Treatment of fatigue 9 (16%) Management of falls 21 (37%) Table 3: Percentage of patients requiring physiotherapy intervention Occupational Therapy Area of intervention Percentage of caseload Behavioural Activation 31 (54%) Adaptations 24 (42%) Work related occupational therapy needs 12 (21%) Management of Falls 21 (37%) Safety outside 7 (12%) Domestic risk assessment and performance 19 (33%) Self neglect 2 (4%) Table 4: Percentage of patients requiring OT intervention 28

30 Conclusion From this cross sectional caseload analysis it is clear that OT and physiotherapy interventions are needed for many of our patients (as a total 74% of our patients needed some form of OT and/ or physio). This is to optimise treatment and manage risk of falls and domestic risk. A significant component of our work is rehabilitation and recovery focused and we need the allied health professionals to input into this. As such we need to develop the MUPS service to add in OT and physiotherapy to optimise treatment outcomes and safety for our patients. A business case should be put together to provide for this. 29

31 Appendix B: Chronic pelvic pain clinic Introduction This clinic was set up as a pilot project in It utilises a different service model to the general MUPs clinics. The clinic sees patients with chronic pelvic pain of greater than six months duration who have been adequately investigated by gynaecology. They can have medically unexplained pain or an underlying pathology (such as endometriosis) but other treatments have failed, and often the pain that remains is disproportionate to the underlying pathology. The aim of the clinic is to reduce the time spent getting repeated referrals and investigations in the NHS for these women; current evidence suggests that women spend an average of eight years in the system without any significant resolution of symptoms. Studies suggest that women leave after this time dissatisfied with the experiences they have had but still with pain (e.g. McGowan et al 2007). They have often attended multiple specialities (gynaecology, gastroenterology, general surgery, urology, pain clinic) which increases risk of iatrogenic harm due to repeated invasive investigations or admissions. For example, multiple laparoscopies can lead to complications such as adhesions, multiple scans cause exposure to repeated doses of radiation which can increased risk of cancer, multiple admissions are disruptive to patients lives and pain medication can cause unpleasant side effects. The clinic is jointly run with gynaecology. It is held fortnightly and the patient is seen by a gynaecologist and a psychiatrist and/or a psychologist from MUPS. Patients have a full history taken and formulation developed as well as being screened and treated with medication for co-morbid depression and other mental health problems. In the original model the patients were to be seen for two sessions of assessment, then referred to a group for psycho-education. This model changed (see Discussion) and we now take people on for 1:1 work instead. Method For this review we have tracked the referrals to evaluate what happens to these women following being referred to the clinic. 30

32 Results: In the first year of the clinic running there were 43 referrals. What happened to these referrals is represented in the flow chart below: 43 referrals into the service Assessed Never engaged Pending Drop out of Assessment 6 Ongoing assessment 6 Treatment complete following assessment 5 Taken on for 1:1 work 9 Referred on 10 Completed 1:1 work 2 Ongoing 1:1 work 6 Drop out 1:1 work 1 Figure 7: Outcomes from CPP Clinic referrals 31

33 Number of patients A more detailed breakdown of referral outcomes is given in Figure 8 below: What happens to patients referred to the chronic pelvic pain clinic Figure 8: Detailed outcomes of CPP Clinic Referrals Discussion 43 patients were referred to the service. We only have clinical outcome measures for the patients taken on for 1:1 work with our service. As this work has been completed with only two patients to date, the results are not included in this analysis as the sample size is too small to demonstrate anything meaningful. Patients who never engage or drop out. As is shown in figures 7 and 8, 14% of patients never engage; this is much higher than the general MUPS service at 6.5%. Further education may need to be done with referrers to ensure appropriate psychoeducation about the clinic is done prior to 32

34 the referral being made to ensure patients are happy to attend and understand the basic model. Drop out rates are running at 16% which is about on par with the 2015 rates for the general MUPS clinic. Most patients drop out at assessment; we are not clear on reasons for this, however, it may be to do with our previous service model. Change in service model Initially our service model was to see for initial assessment and then do eight sessions of group psychoeducation. This pilot failed. Reasons for this included that unexpectedly this group have much higher employment rates that our general MUPS patients which made it difficult for them to commit to taking time off work to attend a group. 1 Also women generally did not like the idea of a group and may have not come back for assessment once that was mentioned. Since the group was scrapped we have had lower drop out rates. The other issue with the group was that although the three women who did it found it helpful in terms of peer support and psychoeducation, they all reported that pain had not improved or got worse because of the increased focus on symptoms. They were all given 1:1 interventions following group and they all improved significantly with these. As such it was concluded that the group was both unpopular and ineffective and it was also taking a long time to gather enough patients to participate in a group, leaving people without treatment for long periods of time. It was reviewed in August 2015 and we stopped the group and changed to 1:1 interventions which appear much more popular and acceptable to patients. 1 (High employment rate is a finding congruent with other studies. One reason for this may be a social expectation that women will continue to work with chronic pelvic pain whereas there is no such expectation for conditions such as non epileptic attack disorder. As such employment rates for the chronic pelvic pain clinic women run at about 80%; the inverse is true for NEAD patients). 33

35 Referrals on to other services A large proportion (23%) of patients are referred on to other services following assessment. This is twice the rate of referrals to other service than the general MUPS clinic. This may be because we have more referral options as the clinic is jointly run by gynaecology with half the referrals on being to mental health specialities and half to physical health specialities. This can be viewed as a positive outcome because referral to an appropriate alternative service with a good explanation is better than just being sent back to the GP with unresolved pain. Treatment complete at assessment: A relatively high proportion of patients (12%) complete treatment during the assessment process. Unfortunately we were not prepared for this and have no outcome data to support this finding. For the patients who completed, one was following initiation of an antidepressant which completely resolved pain, one was following resolution of pain with Gynaecology treatment, another was due to pain spontaneously resolving and the last two were due to the effects of psychoeducation. 1:1 work This is often initially done by our support workers who work with the pain toolkit to rehabilitate patients to manage pain better day to day and increase activities in those who have withdrawn from them. CBT is used as well as other psychological therapies such as bereavement work and self esteem work. Conclusion The chronic pelvic pain clinic has been running for a year. We have limited outcome measures for the clinic, but what we do know is that it is a way for patients to gain an acceptance of their condition and live with it with a better quality of life, as well as gaining release from further potentially damaging tests and investigations. Often patients will say that this is the first time anyone has actually spent time listening to them and we are going to develop patient satisfaction tools to try and 34