LONDON, November 26 /PRNewswire/ -- Results from a new national survey show that over half of people living with severe ankylosing spondylitis (AS) - a painful, progressive, chronic disease, most commonly diagnosed in those in their twenties - identify work as the area of their lives greatly affected by their condition, and that early intervention and better support from employers is key to their staying in work.(3) But this is not always happening in the UK, leading to a call to action from the National Ankylosing Spondylitis Society (NASS) directed at government, employers and doctors.
The national Survey on Work, conducted by NASS, found that work is an essential element of daily life for people living with AS: (3)
- Over half (54%) with severe AS identified work as the area of their lives most affected by their condition - Despite this, only a third (38%) had received useful advice from either their healthcare professional or employer on coping with their condition at work. - Approximately half reported that their GP (58%) or rheumatologist (49%) had never discussed work issues with them.
This first-of-its-kind research and call to action led by experts were released today by the National Ankylosing Spondylitis Society.
Jane Skerrett, director of NASS, said: We know from speaking to our members how important a fulfilling working life is to people with AS - so helping them feel supported in their working environment is key. We encourage those with AS to speak to their healthcare professionals, about more than just the signs and symptoms of their condition, but also the impact it has on their social life, general well-being and ability to work.
An ongoing issue
AS is a chronic, autoimmune disease that has no cure and primarily affects the spine but can also affect other joints, tendons and ligaments, as well as eyes, lungs, bowel and heart. Approximately 1 in 200 men and 1 in 500 women in Britain are affected by the disease. The disease typically affects people in their late teens and twenties, an age when many people have their full working lives ahead of them.(2)
Early identification and effective treatment are key to the effective management of AS. Despite this, the survey found that delays in referral, diagnosis and treatment were common:(3)
- Almost half (47%) of those surveyed were only referred to a specialist after waiting more than a year after seeing their GP for the first time, one in ten (11%) waited more than ten years. - Even when respondents did get to see a specialist, nearly a third (31%) waited over two years between first seeing that specialist and getting a diagnosis of AS.
A Call to Action
Based on these findings, NASS convened a panel of experts in AS patient care and work to agree a set of recommendations to address the challenges for people with AS to remain confidently in work. The Expert Panel called, among a set of detailed recommendations, specifically for:
Government - To create a national director for musculoskeletal conditions - To establish a Health and Work Taskforce to identify where government departments may best work together to improve patient outcomes (e.g. Dept of Health and Dept of Work and Pensions) GPs - The Royal College of GPs should develop and promote clear and adequate post-graduate training programmes in musculoskeletal disease for all trainee GPs to ensure better awareness of inflammatory musculoskeletal conditions such as AS - To ensure introduction of appropriate means of identifying possible inflammatory musculoskeletal disease in primary care and a clear referral pathway to a rheumatologist to shorten the patient journey from diagnosis to effective treatment Rheumatologists - To consider the ability to stay in work an important goal in the management of AS and set out effective standards of care for people living with AS - To work with the entire range of healthcare professionals to highlight the importance of multidisciplinary teams to manage AS, support people in planning their working lives and staying in work and ensure the availability of these teams Employers - To provide appropriate training to educate co-workers and enable their managers to support people with long-term conditions such as AS to stay in work - To be creative in their approach to job design for people with LTCs such as AS, including implementing flexible working hours, amended job descriptions and promoting inclusive recruitment practices Patients - To join together to demand - from healthcare professionals, government, and employers- swifter access to diagnosis, and the right management, and treatment and support to stay productive in work, and get the best outcomes from their working lives and their lives outside work - To take an active role working with their healthcare professional team, informing themselves of the most effective management strategies and treatments for their condition and their psychosocial well being
To take an active role working with their healthcare professional team, informing themselves of the most effective management strategies and treatments for their condition. The full set of recommendations can be found at http://www.nass.co.uk.
Dr Andrew Keat, a leading Rheumatologist from Northwick Park hospital who worked closely with NASS on the recommendations, said: It is of great concern that a high proportion of people with AS spend many months or even years with undiagnosed progressing disease and wait an average of 75 weeks from their first referral to a specialist to finding an effective treatment. Evidence tells us that effective treatment helps people to stay in work, so the sooner people with AS receive appropriate treatment, the better. As healthcare professionals we should be active in discussing the impact of our patient's condition on work and provide them with advice on how to ensure a productive working life.
Pauline Lucas, from NHS London who also worked closely with NASS to develop today's recommendations said: In these tough economic times, we must ensure that we keep our staff motivated and well-supported at work. This includes giving people with long term conditions (LTCs) such as Ankylosing Spondylitis (AS) appropriate support. Employers should be creative in their approach to job design for people with LTCs such as AS, including implementing flexible working hours, amended job descriptions and promoting inclusive recruitment practices to help support people to participate in work wherever possible.''
One of the NASS expert panel members, Andrew George MP for St Ives said: The survey findings present strong evidence of the need to provide the right joined-up services and support, to enable people with conditions such as AS to access employment and achieve their ambitions in the workplace. In addition, the Government should identify a shared DWP and DOH budget which should help to deliver a better harmonisation of improved health and lower welfare expenditure outcomes for people with debilitating chronic conditions.
The course of AS is variable, but the majority of patients have continuous disease activity with episodes of acute pain, known as 'flare ups', against a background of persistent symptoms. There is a need for joint replacement surgery in some patients. In its most severe form, AS can result in complete spinal fusion, which can cause severe functional limitation and the potential for deformity over time.(4) Although symptoms can occur at any stage of life, onset of AS is typically in the late teenage years and twenties. AS is nearly three times as common in men as it is in women, and men are also more likely to develop severe spinal disease.(4) About a third of people with AS may be unable to work altogether, with a further 15 per cent reporting some changes to their working lives.(4)
About the Survey on Work(3)
The Survey on Work was completed online and by post by 324 NASS members from 27th August to 28th September 2009. 64% of respondents were male and 36% were female. 72% of respondents were employed, 15% not in employment and 13% were retired. Data analysis was conducted by research company KRC Research and supported by a grant from Abbott.
About the Working with AS Recommendations
The six experts involved in the development of the recommendations were Jane Skerrett, NASS director, Dr Alan Nye, GP, Pauline Lucas, NHS London HR manager, Dr Andrew Keat, Rheumatologist and MP Andrew George, and health psychologist Professor Julie Barlow, who both have AS.
1. Office for National Statistics. Population estimates. August 2009.
2. Rogers F.J. The National Ankylosing Spondylitis Society, Guidebook for Patients, A Positive Response to Ankylosing Spondylitis, NASS, June 2004.
3. Survey on Work, NASS Data on File: RM 16094. November 2009.
4. National Institute for Clinical Excellence. Adalimumab, etanercept and infliximab for ankylosing spondylitis. Guidance TA 143. Available on: http://guidance.nice.org.uk/TA143. Last accessed: November 2009.
SOURCE: NASS (National Ankylosing Spondylitis Society)
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