The Queen's speech to Parliament on 3 December 2008, which sets out the Labour government's legislative agenda for the year, is expected to include the controversial welfare reform which aims to get people off benefits and "support" the sick and disabled back into work.
A national consultation by Action for M.E., supported by the Disability Alliance and The Princess Royal Trust for Carers, has revealed that people with long-term fluctuating conditions are "terrified" that the new, more stringent benefits assessment procedures and an enforced return to work, before they are well enough, could further damage their health.
Two online surveys and a discussion forum about the Welfare Reform Green Paper, No one written off: reforming welfare to reward responsibility, found that:
Survey respondents told the charities:
"I am terrified that the decision of whether I have the basics of food and shelter is in the hands of strangers who will base their decisions on forms I will find impossible to fill in and on the luck of the draw of having a doctor who truly understands M.E or not." Linda Reid, Cumbria
"People who do not have the condition or know extremely, intimately well, how it affects someone just cannot seem to see what is really going on with this illness. Medical staff frequently overestimate how much I can do physically, even those who are familiar with M.E. I'm terrified at the thought of this assessment (the Work Capability Assessment) based on my past experience." Female, ex-clerical worker, London (name supplied).
Sir Peter Spencer, Chief Executive of Action for M.E., is clearly torn between the need to draw attention to the hardship which the Green Paper could bring and his desire not to spread panic amongst the vulnerable.
"James Purnell, the Secretary of State for Work and Pensions, has recognised that complex fluctuating conditions like M.E. are difficult to assess. The problem is, the Government does not know what to do about it.
"Ironically, the other danger is that the majority of people with M.E. want to work but face a daily struggle to manage their physical and mental activity very carefully, or pay the consequences and end up house- or even bed-bound for weeks, months, and in some cases years."
Paul Treloar, Director of Policy and Services, Disability Alliance, said:
"Disability Alliance welcomes a number of the proposals contained in the Welfare Reform consultation paper and recognise the very real benefits they will bring to disabled people. In particular we welcome the additional financial support for those with the greatest complex needs, and the doubling of the Access to Work budget. Both measures recognise the extra costs of disability, for those who have employment related extra costs and those unable to work but who need higher levels of benefit income. We also welcome the planned consultation around further changes to see increased levels of choice and control for disabled people over a range of public finding.
"We remain concerned about some key issues: the adequacy of benefit levels more generally for disabled people; the lack of mention of housing benefit given its central role as an in and out of work benefit and the lack of acknowledgement and attention in this Green Paper to the importance of effective benefits administration."
Carole Cochrane, Chief Executive of The Princess Royal Trust for Carers, said:
"Many carers are anxious about being transferred onto Jobseekers Allowance. Although the Government has confirmed carers will not be forced to attend work initiatives or interviews, they must ensure Jobcentre Plus staff are fully aware of this and assist carers only if they want and are able to return to work."
The charities are preparing information sheets to help people with M.E., disabled people and carers to complete the new assessments.
Full consultation results as they relate to people with M.E. are available at www.actionforme.info/survey-results.html
