Considered changing the title to 'Manifesto Allegretto' but realised that would betray (1) my age and (2) my sad on-going fondness for small fuzzy creatures who live on Wimbledon Common...
People with M.E. have great difficulty accessing benefits. Those who persevere through the appeals process are almost always granted them at final appeal. By then, many have made themselves iller in the struggle. I've heard of people deliberately sent to non-local assessment centres, where they are promptly told 'you managed to get here so you can't be that sick'.
Yesterday, I read a post from a father whose wheelchair-bound daughter was deemed 'not unable or virtually unable to walk' in a letter declining benefit. That bears repeating I think. A girl who holds onto furniture to walk inside the house, and can only travel outside the house in a wheelchair is not unable or virtually unable to walk. Really? In whose looking-glass land? And trust me - almost every day brings some variant of that story.
It would appear 'the system' relies on us being too sick to fight for what is ours by right. In my case, that was true. Anthony and I decided that we would not spend my limited energy on a fight. We would be better off financially if I did, but the experience of others suggested I'd also get a lot sicker in the process, and the energy used on fighting would be energy I couldn't spend making our life together as normal as possible. I am very, very lucky to have been in a position to make such a decision. Too many are not and are as I write worsening their illness fighting a battle they should never have to be fighting in the first place.
2: Welfare
Bring about a fundamental shift in attitude in welfare policy and practice towards chronic fluctuating illnesses.
Key facts:
Because M.E. is a chronic fluctuating illness, patients who are too ill to work (and their
carers) are exceptionally vulnerable within the welfare benefits system. Their health suffers and
too many experience a relapse in the struggle to access, claim and retain the benefits they need.
Our surveys consistently show that Department for Work and Pensions (DWP) and Jobcentre Plus staff – including doctors and assessors in subcontracted medical services – do not understand the fluctuating complexities of M.E.
The problem is illustrated by the high number of awards made at the appeal stage after rejection of the first claim.
Our expectations:
Sufficient safeguards will be put in place to protect people who are genuinely unable to work from being pressurised into unsuitable work or work-related activity prematurely, when a return to such activity could be detrimental to their health.
Introduction of up-to-date and accurate M.E. training within local authority Social Services
departments, the Department for Work and Pensions (DWP), Jobcentre Plus and subcontracted
medical services.
A full review of the guidance on M.E. for new and existing assessors and other staff in the Department for Work and Pensions
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