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ARMA Charter for Work 2 March 2010: Today the Arthritis and Musculoskeletal Alliance (ARMA), backed by leading policymakers and employers, is calling for positive action to ensure people with musculoskeletal disorders (MSDs) are properly supported to access employment and remain in their jobs. Launching a new Charter for Work, ARMA is calling on policymakers, employers, and healthcare professionals to make a commitment to decrease the number of people who fall out of the workplace as a result of ill-health. Press release: ARMA Charter for Work press release The charter: Further links:
ARMA 4thursday February 2010 You can download the February ARMA 4thursday newsletter here
ARMA 4thursday January 2010 You can download the January ARMA 4thursday newsletter here
ARMA 4thursday September 2009 You can download the September's ARMA 4thursday newsletter here
World Arthritis Day – ‘Picture This’ online gallery and photographic competition A picture is often able to tell a story much more directly than words alone. As part of this year’s World Arthritis Day’s ‘Let’s Work Together’ theme, we wanted to use pictures and words to convey the important contribution people with rheumatic diseases make to the world of work. ‘Picture This’ is an online gallery and photographic competition situated on the World Arthritis Day (WAD) website (www.worldarthritisday.org/picturethis). It offers people with rheumatic diseases the opportunity to post positive images of themselves at work and to tell what is special about their work situation, for example supportive employers/colleagues/family members, adapted equipment etc. ‘Picture This’ aims to encourage and inspire other people with rheumatic diseases and employers by showing what has been done and what can be achieved, and thus encouraging policy makers and health professionals to give their support. The competition closes on 11 September 2009, but photographs can be posted into the gallery until 12 October 2009. Competition winners will be announced on 12 October 2009 (World Arthritis Day). www.worldarthritisday.org/picturethis
ARMA press release for National Audit Office report ARMA welcomes the publication of the National Audit Office report into services for people with Rheumatoid Arthritis. This report follows on the publication of the review of musculoskeletal services undertaken by ARMA which found that levels of care depended on where you live rather than on need. ARMA is particularly concerned with the need to inform the general public about the symptoms and signs of rheumatoid arthritis and urges the Department of Health to consider a public education campaign to raise awareness and urge them to seek treatment from their general practice. Because rheumatoid arthritis is not considered a long term condition, PCTs cannot assess whether they are commissioning effective services as they have not carried out a needs assessment. The NHS does not consistently provide support or information to people with rheumatoid arthritis to help them remain in or return to work. The result is that people do not seek help early enough and their disease progresses often rendering them unable to work, care and support their families. Whilst providing timely care is expensive in the short term, it is cost saving in the long term to treat rheumatoid arthritis intensively and aggressively from the start. This means that services need to be created that are more responsive to the unplanned nature of the disease, doctors and nurses must become more aware of the symptoms of the disease and the urgency of appropriate treatment. Neil Betteridge Chair of ARMA welcomed the report and said, ““Historically, there was little that could be done to effectively manage rheumatoid arthritis. But times have changed. We know now that early diagnosis followed by the right therapy and supported self-management can make the difference between a life of pain and isolation versus one of mobility and full social inclusion. "In terms of social policy, not to say common sense, this also means the difference between a potentially long term benefits claimant and someone able to work and pay tax. “So there can be no excuses for the government failing to implement the clear, common sense recommendations contained in the NAO report” The Department of Health is urged to prioritise the appointment of a musculoskeletal csar in order to redesign services and engage the PCTs to commission services to meet the needs of the people with these conditions and create the incentives to prioritise appropriate treatment. ARMA wants to work with PCTs to enable them to review their services and engage with the users, who so often can shine a spotlight on how care could be reshaped to the benefit of people living with these conditions. ARMA local groups are made up of clinicians and service users and can enable local solutions to local problems to lessen the impact of this devastating disease on people’s lives.
ARMA audit of the Musculoskeletal Services Framework July 2009 In July 2006 the Department of Health launched the Musculoskeletal Services Framework. In July 2009 ARMA reviewed the implementation of the MSF in a document Joint Working?: An audit of the implementation of the Department of Health’s Musculoskeletal Services Framework.
OverviewThe Musculoskeletal Services Framework demonstrates a new model of service to deliver better care, closer to home for the estimated 10 million people in the UK with bone and joint conditions. The Musculoskeletal Services Framework ('MSF') provides the NHS with new guidance to help improve services for people suffering from conditions such as arthritis,back pain and fractures. The Framework sets out how the NHS can use a wider range of health professionals including physiotherapists, nurses and pharmacists in addition to GPs and hospital consultants. By using more staff to treat patients – rather than just the traditional GP-consultant axis – patients will receive faster treatment, in a more convenient setting such as closer to home rather than in hospital. The framework is crucial to delivering the 18 week pathway from GP referral as orthopaedic waiting times present currently one of the greatest challenges to meeting the target. Links to further documents (including the MSF) within the Health Policy section.
EULAR Stene Essay Prize Finalists 2009 Rare But Not Less Severe – The Challenge to Cope With a Rare Rheumatic Disease Once every two years, EULAR (The European League Against Rheumatism) invite essay submissions for the Stene Essay Prize. The object of the prize is to stimulate the interest of the many people with rheumatic diseases in the work of EULAR and especially in the work of their national organisation. It has been established in honour of the memory of the late Edgar Stene who himself had severe ankylosing spondylitis. He was a great promoter of co-operation between doctors, patients and community workers. The subject for 2009 was - Rare But Not Less Severe – The Challenge to Cope With a Rare Rheumatic Disease. ARMA receive the UK applications and organise the UK judging. With the kind permission of the three 2009 UK finalists, Leyla Sanai, Karen Wilson and Angela Graham, we have added their essays to the ARMA website. Their essays give a very personal insight and we are grateful for the opportunity to publish their submissions. The judges came to the difficult decision that Leyla Sanai should be overall winner and her essay has been submitted to the European panel of judges – we wish her luck in the final round. Please have a read of the three UK finalists here.
King's Fund report Perceptions of patients and professionals on rheumatoid arthritis care (.pdf) A Consultancy Report by The King’s Fund for the Rheumatology Futures Group. January 2009. Commissioned by the Rheumatology Futures Group – a consortium of the main patient, professional and pharmaceutical organisations involved in RA care – this report is the result of a study of the perceptions of patients and professionals of the delivery of care. It explores whether care for people with RA has improved in recent years and seeks to determine the key factors influencing perceptions of treatment. The report outlines key priorities for action in how to improve care for people with RA. ARMA are pleased to report that after sustained pressure from ARMA, several of our user group membership organisations and others, the National Institute for Health and Clinical Excellence (NICE) has decided to re-examine its decision to block the sequential use of anti-TNFs for people with rheumatoid arthritis (RA). As the umbrella group for the musculoskeletal community, ARMA lodged an appeal demanding that NICE re-examine this decision and on Monday 24th November 2008, NICE announced that it upheld a number of appeal points raised by ARMA and other appellants, and that it will make a new assessment of sequential use. NICE, the government’s rationing watchdog, tasked by the Department of Health to assess whether treatments should be available on the NHS, had previously ruled that people with severe RA would not be permitted to try a second anti-TNF if the first one had not worked for them – a process known as sequential use. In 2004, NICE began assessing whether anti-TNF treatments should be available on the NHS for people with severe RA. It finally ruled in favour of their use individually in October 2007. However, it later decided that sequential use of the drugs would not be recommended. As the umbrella group for the musculoskeletal community, ARMA lodged an appeal asking NICE to re-examine this decision. Yesterday it was announced that the appeal was successful and NICE has now recommended that the appraisal process be started again with new terms of reference. ARMA will continue to represent the musculoskeletal community during the new appraisal process and will work with all our partners to try to ensure that the revised appraisal better acknowledges the range complex factors that we all appreciate should be considered in making these types of decisions. 25th November 2008
Backgrounder for World Arthritis Day (Word .doc) Nice Appraisal of anti TNFs Thousands of rheumatoid arthritis (RA) patients have been denied effective NHS treatments on the basis of cost. The move – by the National Institute for Health and Clinical Excellence (NICE) – withdraws currently available treatment options and has been branded ‘a prescription for pain' by the Arthritis and Musculoskeletal Alliance (ARMA). The NICE appraisal document on sequential treatment for rheumatoid arthritis prevents the NHS patients from trying a different anti-TNF treatment to control their RA if the first has been unsuccessful. Anti-TNFs are prescribed for patients with active or severe RA and rheumatologists can choose between three treatments. At the moment it is common practice for rheumatologists to switch a patient to another anti-TNF if the first or previous treatment is poorly tolerated or lacks effectiveness for that individual patient. Between 20,000 and 40,000 people in England and Wales are taking an anti-TNF at any time, and 50% have needed to switch treatments at least once. Professor Rob Moots, ARMA clinician and Professor of Rheumatology at the University of Liverpool , said: “It's almost impossible to know which anti-TNF will work for a patient at the outset. Before this decision we could try patients on each of the three treatments in turn to find one that was effective for them – now we only have one shot at success. “This flies in the face of clinical judgment. Many patients will be left in astonishing pain, while knowing we haven't explored all the options for them.” Ros Meek, Director of ARMA said: “Rheumatoid arthritis is a debilitating disease and living with it is an extremely painful experience. NICE's decision takes away access to a normal and independent life for the many thousands of people battling with the condition. It also totally contradicts Lord Darzi's pronouncements in his recent review of the NHS - in particular his focus on patient choice and patient empowerment. It's a prescription for pain.” The draft guidance is available for information at http://www.nice.org.uk/guidance/index.jsp?action=byID&o=11902#history until 1 August 2008. You can download the ARMA4Thursday newsletter here. ARMA 2007 Survey of Rheumatology Units In 2007 ARMA conducted a survey of 105 rheumatology units in England in response to various reports of substantial changes in musculoskeletal services, including the provision of specialist rheumatology care. The survey was designed to identify what factors are influencing changes in services and the degree to which they are taking place. Key findings • Despite growth in recent years, the rheumatology workforce is predicted to shrink by 20% by January 2008, making it 8% smaller than it was in 2005 and seriously undermining the ability for service users to access high quality multi-disciplinary teams. • There are significant reductions in service provision, with around half of the units surveyed citing pressure to reduce follow-ups and decrease referrals. • There is a significant reduction in secondary care rheumatology services matched by increasing contracting from community provision. • The private sector is becoming increasingly involved in service provision. • Two thirds of hospital trusts are discussing future service design with local PCTs, but involvement of professionals, patients and the public in these discussions is poor. To see the whole report, click here:
Latest ARMA/BSR survey indicates people with RA still unable to access anti-TNF-a therapy (June 2006) The latest survey of UK rheumatology units conducted by ARMA & BSR indicates that a significant number of people who meet the strict NICE eligibility criteria for the treatment face persistent problems in accessing it. Twenty percent of rheumatology units contacted stated that they were unable to prescribe TNF-a inhibitors to every rheumatoid arthritis patient they identified as eligible in accordance with NICE guidance. The top three barriers to prescribing were cited as:
To see the whole report, click here: Key Findings Report - Final.pdfFramework for the Future: Improving Health and Social Care for People with Musculoskeletal Conditions (November 2005) The ARMA/Department of Health jointly sponsored conference, ‘Framework for the Future: Improving Health and Social Care for People with Musculoskeletal Conditions,’ was held on 9 November 2005 at Earls Court Exhibition Centre in London as the latest in ARMA’s series of Good Practice events Bringing together 330 clinicians, allied health professionals, patients and patient groups in the UK’s largest cross-community musculoskeletal event to date, the day highlighted examples of innovative service provision and good practice in musculoskeletal health from around the country. The conference also looked at using ARMA’s Standards of Care and other national strategies for improving service provision and provided a forum for dialogue and expertise sharing across disciplines and different parts of the musculoskeletal community. Presentations from the day are available via the links below. Framework for the Future Seminar 1: Framework for the Future Seminar 2: Framework for the Future Seminar 3: Framework for the Future Seminar 4:
Framework for the Future Seminar 5: Framework for the Future Seminar 6: Framework for the Future Seminar 7: Framework for the Future Seminar 8: Framework for the Future Seminar 10: Framework for the Future Seminar 11: Framework for the Future Seminar 12: Framework for the Future Seminar 13: Access to anti-TNFa - ARMA & BSR report highlights post-code prescribing (6 June 2005) ARMA & BSR have published a new report highlighting ongoing problems for patients accessing anti-TNFa therapies, despite NICE guidance. Health Minister Jane Kennedy, speaking on Radio 4's Today Programme in response to the survey, said patients "are being let down" because they are not being provided with anti-TNF a drugs they are entitled to. 148 consultant rheumatologists were asked whether they were able to prescribe anti-TNF a therapy to all rheumatoid arthritis patients they identified, in accordance with NICE (the National Institute for Health and Clinical Excellence) guidance, and if not what was the main barrier to prescription. 31% of rheumatologists were unable to prescribe for all patients they identified, with most saying that funding was the main barrier to prescription. Professor David Isenberg said that these results were "very disappointing", as they showed that no improvement had been made since the same survey was undertaken in 2003. The Minister stated that primary care organisations and strategic health authorities have a statutory duty to provide the treatments for people who qualify for them and that a lack of funding cannot be used as a reason for people not to get access to the treatments. The report also revealed that a lack of NICE guidance was causing problems for consultants wanting to prescribe the therapies to people with ankylosing spondylitis (AS) and psoriatic arthritis (PsA). Only 42% of rheumatologists were able to prescribe the therapies to all AS patients they identified and only 53% to all PsA patients they identified in accordance with the British Society for Rheumatology guidelines. It is clear that post-code prescribing continues to be a problem for people with RA, and is rife for people living with AS and PsA. The BSR and ARMA are calling on the Department of Health and primary care organisations to address the problems. To see the whole Report click here: [return to current news content] Safety Concerns with Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) (June 2005) or the British Society for Rheumatology: http://www.rheumatology.org.uk
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