A group of six charities have today published a report calling for vital changes to the benefits assessment to make it fairer for people with a fluctuating health condition.
The charities state that huge numbers of people with conditions like multiple sclerosis, Parkinson’s, HIV or arthritis – the symptoms of which can vary significantly over a period of time – are wrongly being found fit to work after undergoing a Work Capability Assessment (WCA) for the out of work disability benefit, Employment Support Allowance (ESA).
The report follows a 2010 survey which found 70% of people who had undergone the WCA said the questions did not take into account how their condition changed over time. 40% of people stated the stress and anxiety caused by the assessment made their condition worse.
The report, led by the MS Society in conjunction with NAT (National AIDs Trust), Parkinson’s UK, Arthritis Care, the Forward-ME group and Crohn’s Colitis UK, was submitted to Professor Malcolm Harrington as part of his independent review of the WCA.
The charities claim the current WCA assesses people at the peak of their abilities (the relatively ‘good days’) without recognising the significant barriers that are experienced through the ‘bad days’.
Russell Fleming from Cornwall has ME (Myalgic Encephalopathy). He says:
“My ability to walk, think straight and my level of pain changes daily, even hour to hour. On my rare good days, I can walk safely for half a mile but then post-exertional malaise [intense exhaustion] can kick in, keeping me out of action for days. On bad days, my mobility is so affected by weakness, imbalance and lack of co-ordination that walking even to the end of the garden is unachievable.”
Twelve recommendations in the report include:
– amends to the wording of the test to ask whether people can complete ‘activities reliably, repeatedly and safely’ and, as appropriate, ‘within a reasonable amount of time’ and ‘without significant discomfort, breathlessness or fatigue’
– improving the test to recognise the barriers to work presented by pain, fatigue and cognitive problems.
– further guidance and training for assessors and decision-makers and more consideration to the general approach to the assessment, timing, and gathering additional medical evidence.
Simon Gillespie, Chief Executive of the MS Society and chair of the review group, said:
“As charities, we have been inundated by concerns from people living with a long term health condition who’ve wrongly been found fit to work. Many of them want to work, but may require extra support to do so. Ensuring that the assessment is fair and consistent is therefore a vital task. This work is just the first step and we look forward to continuing our work alongside Professor Harrington and the Department for Work and Pensions to supporting improvements to the Work Capability Assessment for people with fluctuating conditions.”
The report will now be examined by a group of independent experts, and the charities will have the opportunity to input into proposals before they are sent to Department for Work & Pensions and Ministers via Professor Harrington in the autumn.
Professor Harrington said:
“The group have done a terrific job, and I’m grateful to the MS Society for chairing and coordinating this work in such a tight timescale. I think this represents a real step forward in developing more relevant and effective questions in getting to a better, fairer WCA. I look forward to receiving final the final recommendations from the charities and independent scrutiny group later this year.”
ENDS
For press enquiries or to speak to case studies please contact Jenna Litchfield, Senior Press Officer, MS Society on 020 8434 0782 or email jlitchfield@mssociety.org.uk. For urgent / out of hours enquiries try 07909 851401.
Notes to editors:
About the report:
– Full report can be viewed HERE.
– The six charities were selected by Professor Harrington to form a working group to review the suitability of the WCA for people with fluctuating conditions. The review was completed and report compiled in just three months.
About work capability assessments:
– For more information on how work capability assessments are conducted and points awarded, go to: www.direct.gov.uk/en/DisabledPeople/FinancialSupport/esa/DG_172012.
About the charities:
MS Society
Multiple sclerosis (MS) is one of the most common disabling neurological conditions affecting young adults in the UK. Around 100,000 people in the UK have MS. The MS Society is the UK’s largest charity dedicated to supporting everyone whose life is touched by MS. We provide a freephone MS Helpline; grants for home adaptations, respite care and mobility aids; education and training; support for specialist MS nurses and a wide range of information. Local branches cater for people of all ages and interests and are run by people with direct experience of MS. The MS Society is the UK’s largest funder of research into MS. www.mssociety.org.uk.
Arthritis Care
Arthritis Care is the UK’s leading organisation working with and for people with all forms of arthritis. People with arthritis are at the heart of our work: they form our membership, are involved in all of our activities and direct what we do. We believe that people with arthritis are entitled to receive the best possible treatment and support, and to have their voice heard in decisions affecting their health and well-being. www.arthritiscare.org.uk.
Parkinson’s UK
Every hour, someone in the UK is told they have Parkinson’s. Because we’re here, no one has to face Parkinson’s alone. We bring people with Parkinson’s, their carers and families together via our network of local groups, our website and free confidential helpline. Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s. As the UK’s Parkinson’s support and research charity we’re leading the work to find a cure, and we’re closer than ever. We also campaign to change attitudes and demand better services. www.parkinsons.org.uk
Forward-ME Group
Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK. Forward-ME has no formal constitution. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS. Membership comprises of Action for ME, Association of Young People with ME, Blue Ribbon for awareness of ME, CFS Research Foundation, ME Association, ME Research UK, reMEmber, and The Young ME Sufferers Trust. www.forward-me.org.uk
NAT (National AIDS Trust)
NAT is the UK’s leading charity dedicated to transforming society’s response to HIV. We provide fresh thinking, expert advice and practical resources. We campaign for change. Shaping attitudes. Challenging injustice. Changing lives. www.nat.org.uk
Crohn’s and Colitis UK
Crohn's and Colitis UK is the working name for the National Association for Colitis and Crohn’s Disease (NACC). Established in 1979, the charity’s services include four helplines, a website, a wide range of accredited information sheets and booklets and a nationwide network of locally-based Groups. The charity raises awareness of these little understood or known conditions, campaigns for improved care for patients, and funds vital research. Crohn’s and Colitis UK currently has nearly 31,000 members. Membership is open to people who have Ulcerative Colitis or Crohn’s Disease, their families and friends, health professionals and anyone interested in supporting the work of the Association. www.crohnsandcolitis.org.uk
Thanks to the MEA for contributing to this important work, those of us who have to undergo the assessment are counting on you!
Take THAT Lord Freud! 🙂
Brilliant report everyone. Great collaboration.
Here we go:
http://www.bbc.co.uk/programmes/b010y0sk
Scroll down and hit Chapter One. ‘We’ are there with HIV and MS etc. and I think this contribution by Simon is brilliant.
A great effort to coincide with the disability protests in London today.