An annual occurrence that gives rise to an extraordinary range and number of activities across the UK aimed at raising profile and some much-needed funds for the charity and, most importantly of all, raising awareness of what it can be like to live with one or more of the many forms of this painful and debilitating long term condition. It is no small matter either; with some 10 million people in the UK having arthritis, the impact on the individual, family members and wider society can be profound. With juvenile forms affecting over 12,000 children and young people, it really is a cradle to grave issue.
This year our theme is ‘ Something can always be done‘ as we believe that there is always something that you can do/raise/change – in improving your own life with arthritis or that of others. We believe that making even small changes to lifestyle and managing symptoms will help. However, the first step is always the hardest − and that’s why we are here to help.
A landmark study of the burden of all diseases, `The Global Burden of Disease Study’[ii] reported in the Lancet in March this year, provided indisputable evidence that musculoskeletal (MSK) conditions are an enormous and increasing problem in the UK as well as globally and, Arthritis Care believes, need to be given the same priority for policy and resources as other major conditions like cancer, mental health and cardiovascular disease.
In particular, the report found that musculoskeletal disorders account for nearly one third of the entire burden of disability in the UK, which is increasing rapidly as a proportion of the overall burden of disease due to our ageing population. Low back pain is the single biggest cause of disability, followed closely by osteoarthritis.
Health policy in the UK and across the world has largely ignored diseases which affect the quality of lives and independence of people living with them and focused on those with high mortality such ascancer and heart disease. Now, because people are living longer, it is time for priority to be placed on dealing with this enormous burden from arthritis, back pain and other musculoskeletal conditions to prevent unnecessary pain and disability and enable people to keep independent. Despite effective ways of preventing and treating these conditions, many people do not have access to them because they are not a priority.
No one should underestimate the scale of the challenges, Arthritis Care certainly doesn’t, and looking around at the changes in health and social care being driven by the combination of rising demand and funding cutbacks, it is apparent there will be no lasting solutions without a great deal of clear thinking and straightforward political will. On a generic level there are opportunities and threats aplenty.
Arthritis Care is one of many organisations putting their names to letters to Prime Minister and Chancellor of the Exchequer about the impending arrival of the new Care Bill before Parliament – a Bill that could transform our social care system for current and future generations,eliminating the current grossly unfair postcode lottery when it comes to care, but which could all be undermined if the government sets narrow parameters for access to the system.This will lead to the exclusion of all but those with substantial or critical levels of need from the social care system, a move that will impact on vulnerable people with arthritis now and in the future.We are urging the government to ensure that the next spending review invests enough money into the social care system to ensure that all those assessed as having “moderate” need are able to access the care and support they need, when they need it.
Positive progress is evident, however, in the advent of the new focus on long term conditions in NHS England and the very welcome appointment of Peter Kay as MSK Clinical Director. After years of arguing the case, the inclusion of Rheumatoid Arthritis in the QOF (Quality & Outcomes Framework) that governs much of the focus of attention at GP level, is also to be applauded. And whether you see the advent of the `Lansleyscape’ in the NHS, with CCG’s (Clinical Commissioning Groups), Health & wellbeing Boards etc, as the dawn of a bright new era or the beginning of the end for the NHS as we know it, the need and the opportunity to develop better, more integrated care pathways for MSK conditions with patient self-management and shared decision making embedded in them promises real and substantial gains.Making the most of this opportunity requires a system-wide shift in the professional culture and the healthcare environments towards a psycho-social, rather than a purely bio-medical, model of health and healthcare.
In order to achieve the best outcomes for people with arthritis, health professionals have to be able to play their part in supporting people to determine what they want from their health care and to enable and support them to better manage their health.
But the final missing piece is for the health professionals to realise and acknowledge that there is another `professional’ partner willing and more than able to drive this transformation – organisations like Arthritis Care (a UK pioneer in supported self-management), with highly skilled and motivated volunteers ready and waiting to take pressure out of the formal healthcare system and help deliver the improvements in health outcomes proven to arise from a proper investment in support, health literacy and patient activation.
Labour’s newly formed independent commission on integrating health and social care, under Sir John Oldham, is one to watch, but we hope it doesn’t just focus on a generic agenda. Although we recognize that at the macro level this task of integration or co-ordination across disciplines must begin with a largely generic perspective, it would be a mistake to believe that the problems with coordinating services for long term conditions like arthritis can be addressed by generic measures alone. Many of the organizational solutions to improving care require the existence of condition – specific thinking and approaches. For example, it would not have been possible to deliver the massive improvements in treatment of heart disease and stroke without a national strategy dedicated to improving services for those conditions. The recent national commitment toclinical networks and national clinical directorsfor, amongst others, MSK conditions, is a very welcome development, which we fully endorse and would hope to see retained.
Meanwhile, the Scottish Parliament is debating legislation to integrate health and social care within the wider context of a public service reform agenda and a warning from the UK Joint Committee on Human Rights last year that the right of disabled people to independent living could be severely undermined, stating that “the government and other interested parties should immediately assess the need for, and feasibilityof, legislation to establish independent living as afreestanding right”.
“Scotland’s National Action Plan for Human Rights” talks about Welfare reforms and tightening eligibility criteria for social care support threatening to erode the support many people need to enable their full participation in society. It suggests that using a human rights approach offers a fair and consistent basis to guide policy development, service redesign and resourcing decisions. This requires human rights principles to be embedded clearly within law and policy – for example the health and social care integration legislation – and within processes and decision making, including local strategic commissioning.A rights based approach can help to clarify
expectations of fair, consistent and respectful experiences and of redress when standards fall below this. It offers a coherent values base to reform social care in order to “empower citizens and unlock them from the failings of past systems, rather than locking them into a new system that lacks a clear vision.
And so, back to today’s reality, as we look at the events planned for Arthritis Care Week we canfind : –
- An Arthritis Amble on Weston Super mare’s newly renovated pier
- Wear Valley Branch providing information in Boots Chemist all week
- An Awareness Display Wansbeck Hospital
- Attendance at Volunteer Fair, Chester
- Awareness event – Blackpool Independent Living Centre
- Gateshead branch providing Peer Support at the Queen Elizabeth Hospital
- Flintshire branch Ambling for Arthritis on 19th May.
- West Bromwich Branch chosen as charity of the month by Asda, Great Barr
- Display and booklets at Beccles Library in Norfolk throughout the week
- Runners donating from the Belfast City Marathon
- ‘Introduction to self-management’, Tai Chi and relaxation at the ‘You’re the Expert Event’ for all people living with Long Term Conditions in Orkney
………. and that’s just the tip of the proverbial lump of ice.
There’s probably something happening near you so do join in if you can – if only to let us know what your `something’ is!
[i] Arthritis in the UK is very common and affects some ten million people (one in six) of the UK population. But knowledge of arthritis is very low, misunderstanding and misinformation rife, and most people think that there’s nothing that they can do about it and that it’s inevitable.
[ii] http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2813%2960355-4/abstract accessed 13th May 2013