House of Commons Hansard Debates for 11 May 2004 (pt 58): "ME continues to be a controversial chronic illness, as I have discovered first-hand in the various correspondence that I have received. It is estimated that 25,000 children and 100,000 to 300,000 adults suffer from ME in Britain. The condition has cost the taxpayer about �4 billion to date, with only small inroads being made into treatment and understanding. The report to the chief medical officer by the working group on chronic fatigue syndrome and ME was a landmark in changing Government perceptions of ME. However, at an operational level, the report's findings must have a greater impact on current practices, as access to benefits continues to present problems for sufferers. Lack of knowledge and understanding of the condition among professionals, widespread disbelief and institutional prejudice, lack of effective evaluation and plain stigmatisation mean that there is little or no consideration of the desperate problems experienced by sufferers. The disability living allowance and the new permitted work rules need to be revisited if we are fundamentally to change institutional prejudice towards this very real illness. I find it appalling that I still have to make this case.
Carli Barry was an ME sufferer who tragically took her own life on 8 February 2001, aged 27. Her mother recently spoke about the system that took away her daughter's independence and dignity:
'Applying for benefits for an invisible illness with no diagnostic test is hell. The result largely depends on the beliefs of the doctor sent to examine youa game of Russian roulette.'
Carli's first application for DLA was turned down. Her second application resulted in payment of mobility allowance at high rate and carer allowance at lower rate. Her third application was completely rejected...."
The Centre for Longitudinal Studies found that people with ME received a significantly smaller proportion of DLA awards for their main disabling condition compared with other groups. By contrast, a significantly higher proportion of ME claimants win their case on appeal. Action for ME conducted a survey entitled "Severely Neglected: ME in the UK", in which 44 per cent. of the respondents who had applied for DLA said they had had to go to appeal. Of those who applied, only 25 per cent. were rejected. That illustrates how DLA is being denied to thousands of ME sufferers.
The first hurdle most apparent to ME sufferers is the fluctuating and difficult initial diagnosis of the illness. Having a good GP who is supportive of a patient's ME experience can make all the difference to a successful DLA claim. There are many such GPs. However, it is far too often the case that a disbelieving or untrained local GP destroys an ME patient's chance of receiving correct treatment and advice on undertaking to receive DLA. To resolve the problem, it is essential that local GPs are equipped to deal with ME.
The chief medical officer's working group report on CFS/ME highlighted the need for more doctors, nurses and health care professionals who know and understand CFS/ME. On 12 May 2003 the Health Minister announced a central revenue budget of £8.5 million to develop services specially designed for people with ME. The investment is intended to pump-prime the development of clinical services where none currently exists, but that should be seen only as a beginning, not as an end.
The second hurdle that exists for ME sufferers claiming DLA is an inflexible, poorly explained and burdensome DLA form. The form consists predominantly of questions requiring a yes or no answer, which do not effectively represent the problems associated with ME as a fluctuating chronic illness. Consequently, ME sufferers often inadvertently misrepresent their condition. Furthermore, the DLA application forms are burdensome and often leave ME sufferers exhausted—owing, ironically, to the very forms that are designed to ensure their future support. That acts as a negative incentive to complete the forms, with the risk that ME sufferers will not claim when they should do so.
The third hurdle is the poor training and education of DLA decision makers, causing bias against ME sufferers. The Association of Young People with ME states:
"If decision makers and DWP assessing doctors were given more balanced training and less biased information about ME, patients would be treated more sympathetically by the benefits system."
However, the Department for Work and Pensions initial training for new entrant decision makers states of ME sufferers that they are able to move
"from bed rest one day to being able to venture far afield the next."
That shows an outrageous misunderstanding of ME that must be addressed