Select Committee on Work and Pensions Written Evidence

Memorandum submitted by Neil Riley

  I am the Chairman of the ME Association (Myalgic Encephalopathy/Chronic Fatigue Syndrome).

  The major problem our charity faces with getting our members back into work is that ME is a fluctuating illness. You never know from one day to the next how much energy you will have. Planning to do any thing is an absolute nightmare.

  How on earth can an employer provide for a person with ME (PWME):

    —    work that can be done at such times as the employee is well enough to work—this might be Thursday morning; Friday afternoon; then the following Tuesday morning—but the next week it will be entirely different; and

    —    work that can be left, perhaps for days or weeks, until the employee is well enough to work again.

  I have not had a holiday in the last 20 years in which I have been able to even "holiday" each day, never mind work. I have become familiar with the interiors of many hotel rooms where I have had to rest whilst the rest of the family was off sightseeing. The treat of many holidays was just to be well enough to eat a meal around a table in the hotel restaurant.

  I managed to "work" voluntarily for the CAB for three years. I attended the office Monday and Thursday so I could rest in between. I did three hours work which left me shattered. I missed some weeks because I was ill-so then my colleagues had to step in, read all the files and handle my casework. Eventually they got fed up with my unreliability and I was always feeling guilty about letting them down. Not even voluntary organisations can run their services properly if their volunteers cannot commit to certain hours and certain days. It is ridiculous to expect employers to take on PWME , unless those people are in recovery. Sad to say, 25% of our members are bed-bound and less than 6% will ever recover to anything like their normal lives.

  Can I ask this of you? That any people you employ to carry out a PCA (Personal Capability Assessment) on a PWME is provided with training and the necessary literature on ME/CFS. Our charity will be more than willing to supply a booklet, which is already supplied to doctors, that contains all the necessary information. Without detailed knowledge of the illness there will be huge and unwarranted pressure placed on our members. This can be avoided with forethought and the best information on the illness that is available.

Neil Riley

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