What services do people with arthritis need? Sandra Kirby, Chief Executive, Arthritis New Zealand

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1 What services do people with arthritis need? Sandra Kirby, Chief Executive, Arthritis New Zealand Wednesday 16 th May 2012 Rau rangatira maa, tenei te mihi ki a koutou i runga i te kaupapa o te ra. Haere mai ki te tari o Kaiponapona Aotearoa Tena koutou, tena koutou, tena koutou katoa. Ko Sandra Kirby toku ingoa No Wainuiomata ahau Kei Kaiponapona Aotearoa ahau e mahi ana Ko Orongaronga toku maunga Ko Te Awaikairangi toku awa Korero mai Pakeha I extend my greetings to all the people gathered here. I especially acknowledge and welcome the sponsors for this conference without your support we could not be here. Welcome to this very special gathering for Arthritis New Zealand our first public conference the sharing of information around arthritis and its management as we know it in What services do people with arthritis need? This is an interesting question and I will be attempting to respond to this at a number of levels what services do people want in general and specifically what services do people want from Arthritis New Zealand. There is of course a rejoinder to what do people want and that might be what do people want to pay for either in direct services or in what we are prepared to ask for in our health services. I will need to come back to this part of the response. You will see cost and money as a recurring theme. How can I say with confidence that I know what people want? I don t think I can be that arrogant but I can with confidence say that I have some insights from our own review of our service delivery in 2010; from the advocacy survey we undertook at the very end of 2011 and from work undertaken by the New Zealand Rheumatology Association (NZRA) based on the World Health Organisation best practice guidelines. In addition we can extrapolate from information provided in similar jurisdictions such as the UK and Australia. I will use all of these sources with my own opinion liberally sprinkled throughout.

2 But first let s put some context into the discussion. There are an estimated 530,000 adults living with arthritis in New Zealand. This number is based on the New Zealand Health Survey 1 data and used as part of our Burden of Disease study 2. That s a lot of people 1 in 6 adults. And for many of these people accessing health services is a reality it is estimated that for a GP one in five patients are presenting with an arthritis related condition 3. We can say that people want assistance in diagnosis and treatment of their condition. We can also say with some certainty that what people want to manage is pain possibly the most overwhelming experience related to arthritis in any of its forms. Arthritis Care, the UK patient organisation, ran a survey 4 of 2,000 patients carried out on behalf of the charity found that nearly three-quarters (71%) are in constant pain. For one in eight, the symptoms severely restrict their daily lives, preventing them from walking or going upstairs. On average the patients waited 2.8 years from noticing symptoms of arthritis to being given a diagnosis by their family doctor. Even when diagnosed most people (90%) did not believe the public health system in Britain is doing enough to ensure the disease is diagnosed at an early stage, when treatment is likely to be most effective. We only have limited data on the New Zealand experience though what we do have would suggest a very similar picture. Later this morning you will hear from Frances Benge on New Zealanders experience of chronic pain. Of the more than 2000 telephone calls we received as a result of our osteoarthritis campaign since March we can say that people are experiencing arthritis and finding the lack of information and support from the health sector to be very frustrating. We know there are many initiatives being run in primary care to work with primary care practitioners and patients to better manage arthritis. Let me mention two that we have been actively involved in. 1. The Manaia Primary Healthcare Organisation (PHO) in Northland included a session with an Arthritis Educator as part of the Care Plus package available to patients with a diagnosis of gout. The take up of this service has been very good and we could demonstrate an improved outcome for patients that received this service you will hear more about this later today. 2. In the South Island we have trialled a different option which is having a dedicated Arthritis Educator based within a large PHO Nelson Bays Primary Health. The evaluation of this project is nearly complete.

3 Included in the evaluation is the repose from a survey which shows that more than 80% of the health professionals and all clients found the service valuable. The biggest challenge we have with this model is the funding it has potential but as yet no certainty of funding. Money becomes a a recurring theme. People with arthritis want to taken seriously too many of the calls we receive say words to the effect of My doctor says it s just arthritis. In our review of the Arthritis New Zealand services in 2010 we had a remarkable consistency across all our stakeholder groups staff, health professionals, members, clients and people who have arthritis but hadn t used our services 5. As part of this review we asked people what services they thought Arthritis New Zealand should provide what services do people want from us that are not being filled elsewhere. We got a remarkable degree of consistency across all our various stakeholders. From Arthritis New Zealand people want: Public awareness about arthritis Research into causes and treatments for arthritis Individual support for people with arthritis Information provision A public voice for the Services for people with gout especially Maori and Pacific people Note these priorities were raised by all stakeholder groups but the order did vary between groups. In response to these results as well as other review findings Arthritis New Zealand did totally change our way of delivering services in May last year. We have a much greater emphasis on telephone based services with nearly 1000 clients receiving a full assessment and clinic service by phone in the first nine months and a further 3,000 people receiving brief advice and information over the phone in that time. Frequently we hear the relief in people s voices that a service is available at all. For us, like our sister Arthritis organisations in countries like Australia and the United Kingdom, telephone services are effective. A telephone, increasingly a cellphone, is available in most households and our 0800 number means there is no direct cost for this service no transport costs and no time constraints. It doesn t matter whether you live in Wellington; Waitakere or Wanaka the service is available from wherever you are. There is no way we can provide a 24 hour service but judging by the times some messages are left sleep is affected by arthritis. Public awareness campaigns we have been able to deliver our Arthritis It Could Surprise you campaigns on ankylosing spondylitis and osteoarthritis have raised an awareness of arthritis. For many people these ads have been a real insight they have touched a nerve I am not alone

4 For literally thousands of people we have been able to provide a phone response in a timely manner. But in this day and age the phone is far from the only technology we use Dr Google may be described as the most sought after health provider 6 it certainly is our experience that people use the website as a way of seeking information there were nearly 16,000 website visits in two months at the time of our ankylosing spondylitis campaign of which 68% were new visitors. Knowing you are not alone in dealing with a diagnosis of arthritis remains important for people. Forty years ago Arthritis New Zealand support and social groups met that need. These groups, though still strong in some places, have not attracted large numbers of new members. We have developed, and will continue to develop, new ways of linking people. These include but are not limited to: 1. Group clinics instead of an Arthritis Educator seeing one person at a time in a clinic setting small groups of up to eight people might meet on a topic specific session. In these sessions not only people get information on their conditions and their questions answered but also they get to hear other people s questions and to meet others in their town living with a similar diagnosis. 2. Electronic and telephone linking our Facebook and Tweeting have linked people from their homes with others here and internationally. At an individual level we can connect a person with someone else with their permission. 3. New group formations the most structured of these are our peer support groups in the South Island. These are much more informal support groups with the meetings being held in a café with the focus on social networking. This is what we at Arthritis New Zealand can do but even with this expanded capacity to provide more services we are a long way from delivering services to all people with arthritis in New Zealand. Specialist services are for many people the challenging area of services. Getting access to a Rheumatologist in the public system is for many people the step after their GP diagnosis. Around ten years ago Arthritis New Zealand ran an advocacy campaign that included the riddle Q: Why is a Rheumatologist like Santa Claus? A: Because you only see one once a year. The situation has changed since then but not entirely for the better. If you have severe inflammatory arthritis and your GP writes this in the referral letter the chances are you will be seen promptly. But if you live in some parts of New Zealand and/or you have osteoarthritis or fibromyalgia the chances of you seeing a specialist could be very slim indeed.

5 Rheumatologists in New Zealand There is a shortage of Rheumatologists in New Zealand. Nowhere do we meet what might be considered as optimal levels of service 7 Optimal levels of service we have taken from two sources needless to say the two sources don t agree: 1. In New Zealand the 1994 National Advisory Committee on Core Health and Disability Services indicated that the optimal level of rheumatologists was : 1 FTE per 100,000 population British Society for Rheumatology: 1 FTE per 85,000 population Andrew Harrison of the Rheumatology Association (NZRA) presented data from that shows including Rheumatologists in private practice our ratio is total 33.7 FTE, 1:130,718 Table: Rheumatology in NZ Survey DHB Population* 2004 FTEs Pop/FTE Population* 2011 FTEs Pop/FTE Northland , Auckland , Waitemata , Counties Manukau 481, Waikato Bay of Plenty Lakes , Tairawhiti Taranaki Hawkes Bay , Midcentral , Wanganui , Wairarapa Capital & Coast , Hutt Valley Nelson- Marlborough , Canterbury West Coast , South Canterbury 55, Otago Southland , Totals ,312,

6 The shortage is most noticeable in Northland, Hawkes Bay and Nelson Marlborough DHB areas. Developments in Northland and Hawkes Bay this year may have changed this scenario. Some parts of New Zealand are better served than others Whanganui being the only centre which comes close to the 1994 agreed optimal levels. Table 2: Distribution of Rheumatologists So what is the effect of this lack of specialists? delays in being referred for appointment and therefore delays in diagnosis and treatment; triaging of patients means some conditions such as fibromyalgia are unlikely to be seen by specialist at all in some regions; very busy clinics the experience of some patients is that the specialists are stretched too thin The situation has improved over the last seven years but still not good news if you have arthritis. So it is perhaps not a surprise that more than half of the respondents in our survey of 700 people with arthritis access to a rheumatologist was mentioned as a priority 10.

7 Table 3: Arthritis New Zealand Advocacy Survey Priorities % of respondents' choice of priorities Acess to new Medications Access to Rheumatology Services Possible changes to Sickness Invalids Benefits Availability of Home Support The only factor mentioned more frequently (and not much more frequently) was access to medications. Access to biologic medications for people with inflammatory arthritis has been a challenging area with some recent wins. Over the past three years the access to a biologic treatment for people with rheumatoid, ankylosing spondylitis (AS), psoriatic arthritis and juvenile idiopathic arthritis (JIA) has increased. We don t match the heady access of some European countries 11 - but from no access for some conditions and limited access for rheumatoid arthritis we are now in a position where if all other treatment options have failed and a person has active disease then there may be an option for prescribing a biologic. There are some special groups of people with arthritis for whom we need to take particular care these include children with arthritis and Māori and Pacific people with arthritis. Children with arthritis Children with arthritis are a special group. We do not have good data on the number of children living with arthritis in New Zealand but based on Australia data and the experiences of the paediatric rheumatologists we understand there are around 1,000 children living with arthritis here. This is a sizable group probably equivalent to the number of children diagnosed with cancer although much less visible. I know that I am speaking to the converted with this audience to say children are not miniature adults. Arthritis in childhood JIA is not usually a junior version of adult arthritis; presentation, treatment and prognosis are different. Lisa Stamp will be presenting on JIA this afternoon it is a specialist area that has some unique characteristics.

8 For a parent it is heartbreaking to watch your child struggling with the impact of arthritis where walking, standing, eating and other daily tasks become hurdles of pain. Until recently we were in the unenviable position of having one part time paediatric rheumatologist to serve New Zealand. Nearly three years ago a pilot Paediatric Rheumatology team was established at Starship that, along with the local expertise of Lisa in Christchurch, is better able to meet the widespread families where there is a chid with arthritis. Despite the service being a success its continuation came after a hard won battle. We at Arthritis New Zealand were proud to have contributed to this great outcome. It is a very lonely place to be if you are a parent in the position of getting a diagnosis of arthritis for your child. The treatments that are effective in getting your child out of pain, keeping her (or him) mobile and giving them the best chance of a normal life are time consuming, involve many specialist visits hospital, physio, orthotics to name but a few. And then when your well-meaning family or friends check the internet they see that the drugs your child is taking like prednisone and methotrexate you are forced to defend your child s treatment. Isolation and misunderstood are words we hear from parents. It makes it essential for an organisation like ours to be able to link families up with another family or groups of families to see that there are others dealing with similar issues. Over the past two years with the assistance of generous grants we have been able to host an annual camp for children with arthritis and their families. The evaluations from these camps show the value of such events. We plan on making this an ongoing feature although always this will be funding dependant. Linking with other families is something we can do whether it be just one family/ one parent to another or a link through some of the existing groups linked to Kids With Arthritis we will continue to try and match people s needs. Finding another like you is a life saver. Māori and Pacific People It has been recognised for more than a decade that Māori and Pacific people experience worse health outcomes and die younger than non Māori, non Pacific people in New Zealand 12. For Māori and Pacific people with arthritis are not immune. While all forms of arthritis are included in this statement the focus must be on gout. The incidence of gout among Māori and Pacific people is up to five times higher than the Pakeha (European) population 13 Gout affects people across the spectrum of their life including 14 :

9 Avoiding situations where the affected area(s) may accidentally be touched unable to put their shoes on or walk with ease Limping; crutches, or relied on family support to be mobile. Difficulties with daily living eg toileting; dressing; writing Disturbed sleep for self and partner Inability to exercise regularly and participate in sports Weight management had subsequently become difficult. Avoiding social situations Increased sick leave and for having to leave work Not being able to wear work uniform eg safety boots Gout is very much a two edged sword it is a prevalent form of arthritis in New Zealand that causes unnecessary pain, suffering and loss of income for people affected. It is also one of the most treatable forms of arthritis with effective and relatively inexpensive effective medications. However the medications are only effective if they are both prescribed and used. At present both of these are obstacles. The Counties Manukau Gout Action Group, of which Arthritis New Zealand is but one member, has made a number of observations about the need for better services for people with gout 15 this includes the need to take gout more seriously; for earlier diagnosis; better and more effective treatment and the need for joined up services so that people with risk factors might be screened and intervention occur earlier. Joined Up Services In concluding there is a need for more and better services for people with arthritis. In some places services exist but often in isolation. We know there is a squeeze on health budgets and we need to maximise the existing budgets. This is our community challenge. What people with arthritis want is just treatment where just is fair and equitable. These conditions are the leading cause of disability for adults in New Zealand. They are currently costing the country an estimated 1.7% of our GDP 16 - $3.2billion in So yes money may have been a recurring theme but the costs are real. When we as a country take arthritis seriously enough to consider this a priority and provide JUST treatment Joined Up Services Together. Kia ora koutou katoa 1 Ministry of Health (2008) A Portrait of Health: Key results from the 2006/07 New Zealand Health Survey, Wellington, June 2 Access Economics (2010) The economic cost of arthritis in New Zealand in 2010 Published by Arthritis New Zealand Wellington

10 3 Taylor W, Smeets L, Hall J, McPherson K (2004) The burden of rheumatic disorders in general practice: consultation rates for rheumatic disease and the relationship to age, ethnicity and small area deprivation New Zealand medical Journal 117 (1203) 4 Arthritis care research reported in Daily Mail retrieved from 5 Capacity Development report to the Arthritis New Zealand Governing Body November Arthritis New Zealand Service Review Danger of Dr Google: 25 per cent of women misdiagnose themselves on the internet Published: 23:01 GMT, 17 April 2012 retrieved from /Danger-Dr-Google-25-cent-women-misdiagnose-internet.html 7 Harrison A (2011) Overview of rheumatology services in NZ past and present increasing capacity to T2T while maintaining service levels Expert Forum Treat-To-Target In Rheumatoid Arthritis How To Optimise Service Delivery To Meet The Treat-To-Target Principles Auckland December Harrison A (2004) Provision of rheumatology services in New Zealand The New Zealand Medical Journal NZMJ 23 April 2004, Vol 117 No 1192 retrieved from: 9 Ibid 10 Arthritis New Zealand 2011 Advocacy Survey results 11 Kobelt G, Lekander I, Nicolae YS,(2010) Access to innovative treatments fro rheumatoid arthritis in New Zealand. A comparison with Australia and the UK Auckland 12 Ministry of Health (2002) Reducing Inequalities in Health Ministry of Health Wellington retrieved from 13 Martini N, Bryant L, Te Karu L, Aho L, Chan R, Miao J, Naidoo C, Singh S Yieu A (2012) Living With Gout in New Zealand: An Exploratory Study Into People s Knowledge About the Disease and Its Treatment JCR: Journal of Clinical Rheumatology Volume 18, Number 3, April Ibid 15 Counties Manukau Gout Action Group (2011) Gout: An alarm bell for diabetes and cardiovascular disease Retrieved from 16 Access Economics