PREVENT TRANSFORM CURE

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1 PREVENT TRANSFORM CURE The Arthritis Research UK Manifesto

2 2 Prevent, Transform, Cure The Manifesto ABOUT US Arthritis Research UK is the charity dedicated to stopping the devastating impact that arthritis has on people s lives. Everything that we do is focused on taking the pain away and keeping people active. Our remit covers all conditions which affect the joints, bones and muscles including osteoarthritis, rheumatoid arthritis, back pain and osteoporosis. We fund research into the cause, treatment and cure of arthritis, provide information on how to maintain healthy joints and bones and to live well with arthritis. We also champion the cause, influence policy change and work in partnership with others to achieve our aims. We depend on public support and the generosity of our donors to keep doing this vital work. Arthritis Research UK, June 2014

3 Prevent, Transform, Cure The Manifesto 1 PREVENT, TRANSFORM, CURE Going to work, playing with our children or grandchildren, going out with friends or walking to the shops, are activities that we take for granted. But 10 million people across the UK have a daily fight against pain, fatigue and a lack of mobility because they have a musculoskeletal condition which affects their joints, bones and muscles. Musculoskeletal conditions are the single biggest cause of disability and pain across the country, leading to 7.5 million working days being lost each year. The number of people living with arthritis is expected to increase by over 50% amongst the over 65s by Decision makers must tackle these challenges to avoid our health and social care services becoming overwhelmed. Work with us to champion the prevention and cure of arthritis and musculoskeletal conditions whilst transforming the lives of those you wish to represent. Become an Arthritis Champion today. Living with arthritis Arthritis is unpredictable: sudden flare ups and problems with my medication are really difficult to manage. Most of all, it s hard to explain to my friends why I can t do something, despite the fact that I look normal and could do it a week ago. Emily (17), who has juvenile idiopathic arthritis

4 2 Prevent, Transform, Cure The Manifesto THREE THINGS YOU CAN DO TODAY People are living in pain now, so you do not have to wait until after the election to make a difference. Below are some of the ways you can make a huge impact today: Issue our template press release championing your support for our manifesto Check whether your local authority has included musculoskeletal conditions in their joint strategic needs assessment. If they have not, write to them and ask them why, using the template letter available on our website: Ask your local Overview and Scrutiny Committee to conduct an investigation into musculoskeletal services locally Please see our website for more information. Let us know the action you have taken after reading the manifesto via

5 Prevent, Transform, Cure The Manifesto 3

6 4 Prevent, Transform, Cure The Manifesto PREVENT If elected I will make musculoskeletal conditions a public health priority To make musculoskeletal conditions a public health priority we need: The Government, Public Health England and local councils placing musculoskeletal conditions at the heart of their public health activities Local authorities to take into account the pain caused by arthritis when producing their physical activity plans A fracture liaison service linked to every hospital An ageing population and growing levels of obesity will mean that the number of people with arthritis will continue to increase. Whilst these conditions do not typically take life, the pain they cause and the limits they place on movement can take away quality of life. Much more can be done at a national and local level to encourage people to have healthy joints, bones and muscles throughout their lives. Making public health a priority 30% of disability nationwide is due to musculoskeletal conditions. But many local authorities do not even mention arthritis or back pain in their joint strategic need assessment, despite that document being the basis for the provision of their services. Keeping people active, mobile and healthy People can reduce their risk of developing a musculoskeletal condition by taking exercise and living healthier lives. For example your risk of knee osteoarthritis is considerably higher if you are obese. Despite this, not enough is done to demonstrate to the public the link between healthy lifestyles and healthy joints, bones, and muscles. Being active makes living with arthritis easier and less painful: local authorities need to do more to promote and facilitate this.

7 Prevent, Transform, Cure The Manifesto 5 The fight against osteoporosis: preventing falls and breaks Falls and fractures are a pressing public health issue among older people: a broken hip can have a massive impact on someone s life. Hence, once a first break occurs it s vital that a second break is avoided. A fracture liaison service (FLS), which provides targeted assessment and treatment for those with fractures, is widely regarded as the best way to address the problem of preventing future fractures. It is both a clinically effective and a cost effective solution. Despite this, only 37% of local health services have an FLS. We would like to see clinical commissioning groups ensure that a fracture liaison service is linked to every hospital. CASE STUDY: OSTEOARTHRITIS AND OBESITY When Jim got to the age of 65 his increasing weight and decreasing fitness levels forced him to take drastic action. Weighing 16½ stone at just 5ft 7ins, he was feeling more and more pain in his left knee. I was square and squat and I knew I was too heavy for my knees; the pain never stopped me walking but it was constant and nagging, says Jim, a retired company director. Jim started to attend a local slimming group. It was a catalyst for me having to be weighed publicly every week and everyone in the group knowing if you have gained or lost pounds was my incentive. I found it worked very well for me. At the same time Jim started to exercise, going for a long walk every morning. A year and a half after starting his weight loss and exercise regime, Jim has lost four stone and is now a trim 12½ stone. It s been terrific, he says. Losing weight and exercising worked well together the one encouraged the other. As I lost weight the pain in my knee gradually reduced, and it s practically gone now.

8 6 Prevent, Transform, Cure The Manifesto

9 Prevent, Transform, Cure The Manifesto 7 TRANSFORM If elected I will campaign locally to ensure that people with arthritis get high quality care, at the time that they need it. To transform the experiences of people living with musculoskeletal conditions now, we need: Greater personalisation of care through care plans and personal health budgets An end to the false distinction between drug and non-drug based interventions A commitment to early diagnosis and improved coordinated care People with musculoskeletal conditions in the UK are not being sufficiently supported as they seek to live lives free from pain. We believe that access to services and treatments need to be transformed, to deliver high quality, personalised care. More person-centred care One of the challenges of musculoskeletal conditions is that everyone can be affected in different ways. But nobody knows their condition better than the person with it. This is why we want to ensure that everyone with a musculoskeletal condition is offered a personalised care plan. Because we believe the needs of those with arthritis should be listened to, we are developing a questionnaire for patients to communicate their perception of their health (see case study on page 8), which we would like to see incorporated into the NHS Outcomes Framework. An end to the false distinction between drug and non-drug based interventions Under existing regulations if the National Institute for Health and Care Excellence (NICE) approves a drug treatment, it must be provided by the NHS within three months. If NICE recommends a non-drug intervention for people with arthritis, such as a physiotherapy review or exercise to help relieve pain, the NHS is under no obligation to provide this. As many arthritis treatments aren t drug based, we believe there is an inbuilt bias in the system which needs to change. We would like NICE to review its approach to non-drug based interventions of benefit to people with musculoskeletal conditions.

10 8 Prevent, Transform, Cure The Manifesto Fighting conditions such as rheumatoid arthritis: early diagnosis and more coordinated care With many inflammatory conditions, such as rheumatoid arthritis, the clock starts ticking once symptoms develop: early identification and treatment is urgently needed to avoid lifelong pain and disability. Having incentives within the system is an important way of driving forward improvements, for example the best practice tariff for early inflammatory arthritis. More broadly, we would like to see the development of musculoskeletal strategic clinical networks across England. These networks will bring together healthcare professionals to improve health outcomes, address integration and ensure better coordination. Linking together in this way could transform care for people with painful conditions. CASE STUDY: HEARING FROM PATIENTS ABOUT THEIR HEALTH OUTCOMES If we don t know the outcomes of a patient s care, we can t tell whether their treatments have improved their health condition or not. There isn t presently an outcome measure for musculoskeletal conditions, which means that opportunities to improve care and services are being missed. That s why we are working to develop a specific patient reported outcome measure (PROM) for people with musculoskeletal conditions: the M-PROM. This will allow patients to self-report their health status. PROMs are a way of recording how people rate their own health. Once collated, this provides data to allow quality improvement across health services.

11 Prevent, Transform, Cure The Manifesto 9 ARTHRITIS AND MUSCULOSKELETAL CONDITIONS IN NUMBERS AFFECTS OVER 10 MILLION PEOPLE IN THE UK 5 BILLION NHS SPEND ON MUSCULOSKELETAL HEALTH BUDGET 4th LARGEST NHS PROGRAMME BUDGET Each year 20% of the general population consults a GP about a musculoskeletal problem ONE IN FIVE PEOPLE IN THEIR 50s HAS OSTEOARTHRITIS IN THEIR KNEE Over 86,000 hip replacements and over 90,000 knee replacements in 2012 alone 89,000 hip fractures each year in the UK 14.8 BILLION indirect costs to the economy of osteoarthritis and rheumatoid arthritis. 10 BILLION indirect costs to the economy of back pain 2 BILLION SPEND ON HIP FRACTURES A YEAR

12 10 Prevent, Transform, Cure The Manifesto

13 Prevent, Transform, Cure The Manifesto 11 CURE If elected I will champion the UK s leadership role in medical research For this leadership role to continue we need: Long term support of the Charity Research Support Fund The treatment costs of those taking part in clinical trials to be funded and delays addressed More and better data on musculoskeletal conditions to be systematically captured and used across the health service Arthritis Research UK is committed to funding research into the cause, treatment and cure of arthritis and musculoskeletal conditions. Our research led to a new generation of drugs that have helped millions of people worldwide with rheumatoid arthritis (see case study on page 12). But there is still a lot we don t know about the best ways to prevent and treat these conditions. We need politicians to champion medical research, give a long term commitment to the funding streams which maximise our investment, and the data to drive research and improve healthcare. Supporting charitable research in universities The Charity Research Support Fund provides an uplift to support charity-funded research in universities. It covers funding towards the full economic costs of research such as universities lighting, heating and maintenance of labs. This fund ensures that donations to charities are properly invested in research rather than universities upkeep costs. Without the Charity Research Support Fund we would have less funding to invest in our world class research. Enabling people to benefit from clinical trials in the NHS Under current arrangements, when charities fund research in the NHS they should only pay for the direct costs of research. The healthcare costs for patients involved in research should be funded by the NHS locally. Different interpretation of the guidelines means local NHS bodies sometimes won t fund these healthcare costs which produces additional cost and delays. This acts as a barrier to research. It is crucial that NHS England works with local NHS bodies to address delays in the system.

14 12 Prevent, Transform, Cure The Manifesto Improving treatments and lives through more and better collection of musculoskeletal health data A key element of delivering ground-breaking research is using data to understand the safety and impact of different treatments on people with arthritis. However there simply isn t enough data about the care of people with arthritis being collected at present, which limits our understanding. Improved collection and use of patient data should be maximised and good governance ensured. This will give us the best chance of improving patient care and discovering a cure. CASE STUDY: ANTI-TNF TREATMENTS Anti-TNF therapy, pioneered and developed by Arthritis Research UK, has transformed the treatment of people with rheumatoid arthritis and other conditions across the globe. It is an example of the huge benefits that research can bring. Allison developed severe rheumatoid arthritis when she was 40 years old. She says about anti-tnf therapy: I ve gone from being extremely ill, taking lots of painkillers and anti-inflammatories, wearing splints on both wrists and having to give up work for six months, to going back to work full time, and even going to the gym, so I m a shining example of what these drugs can do, says Allison, a manager at a further education college in Leeds.

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16 14 Prevent, Transform, Cure The Manifesto Arthritis Research UK Copeman House St Mary s Gate Chesterfield S41 7TD Registered Charity England and Wales No , Scotland No. SC

November 2014. 3. This submission focuses on the following areas:

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