Letter to MPs about
the Welfare Reform Bill

24/10/99

Dear MP,

As you will know, the new Welfare Reform Bill is currently before parliament, and I am writing on behalf of the Leeds & District M.E. Group to bring to your attention the negative effect which the bill will have on the lives of many people with ME/CFS.

We are a self-help group, providing information and support to people with ME/CFS and their carers. We have approximately four hundred members in the LS and WF post code areas, including many in your own constituency.

According to the recent National Task Force Report on NHS Services For People With CFS/ME, the condition affects between 0.3 and 2.6 per cent of the population (i.e. between 3,000 and 26,000 people in the LS postcode area alone). I have enclosed a copy of our leaflet, giving some details about ME/CFS and our group.

I would like to bring the following points to your attention:

1. Under the bill, Incapacity Benefit will only be payable to those new claimants who have paid the required amount of National Insurance contributions in one of the last two tax years.

   We think that any attempt to reduce the number of those entitled to benefit, thereby increasing the burden on those who have become chronically ill, is a very distressing step for any government to take, but we wish to emphasise that this measure may hit those with ME/CFS particularly badly.

   As the condition often goes undiagnosed for a very long time, many sufferers try to struggle on as best they can for several years, working whenever they are able, but with intervening periods when they are forced to stay at home. For this reason, many of those who are eventually forced to claim Incapacity Benefit may find that they have not made enough NI contributions in the previous two years. The proposed change will penalise them precisely because they have done their best to keep on working.
    

2. The proposed bill will reduce Incapacity Benefit payments to those new claimants who have some other source of income, such as a pension.

   Once again, we think it is unfortunate that this measure will increase the burden on those who have become chronically ill and we are surprised that the government should wish to reduce the incentive for people to provide for themselves in old age and sickness.

   We also wish to point out that some elements of the financial burden on our members may not have been considered:

   1. Entitlement to the mobility component of Disability Living Allowance is presently so restricted that many people who are not well enough to use public transport do not receive DLA, and therefore have to pay taxi fares out of what income they have (such as Incapacity Benefit or works pension) or else stay at home in isolation.
   2. Many of our members derive help from therapies such as acupuncture, which are extremely difficult and usually impossible to obtain through the NHS. They therefore have to pay for these out of such income as they have. Those who do not have enough money to pay have to go without, and therefore have a reduced chance of improving their quality of life and of making sufficient progress so as to attempt to return to work.

   The new bill will increase the incidence of these inequalities.
    

3. The new bill will abolish Severe Disablement Allowance for new claimants over 21. As you will know, SDA is a benefit which may currently be paid to the most severely disabled of those who do not qualify for Incapacity Benefit.

   It seems particularly cruel to abolish any benefit which is paid to such people, but particularly so at a time when entitlement to Incapacity Benefit is being further restricted (as discussed in point 1 above).
    

4. Under the new legislation, Disability Living Allowance will no longer be granted for life, thereby increasing the number of medical examinations which the most severely disabled will have to undergo.

   It is difficult for those who have not been chronically ill and lived with the threat of their financial lifeline being taken away from them by those in authority to appreciate the stress and distress which these examinations can produce. As DLA for life is only granted to those who are most severely ill, and will already have undergone at least one examination to establish their condition, this measure seems to be a particularly harsh one.
    

5. The new bill will bring in a new test for Incapacity Benefit, replacing the current All Work Test.

   The Labour party was rightly critical of the All Work Test when they were in opposition and it therefore seems puzzling that most of the questions on the existing form will, as we understand it, be retained on its replacement, with further questions added. The form is already a daunting one for those who are ill to complete and it will be unfortunate, if this burden is further increased.

   I do not have space, in what is intended to be a short letter, to go into all the shortcomings of the All Work Test but will gladly set out the particular problems it causes for ME sufferers in a follow-up letter if you wish. However, I would like to stress that the present system is less a test of incapacity than a battle of wits, more a test of who is strong and determined enough to withstand the process than of who is incapable of work. It is intended to root out scroungers, but I am afraid that a clear-headed scrounger stands much more chance of getting Incapacity Benefit than do those who are genuinely ill and do not therefore have a clear enough head to withstand the process of interrogation.

   Once again, I will gladly substantiate these statements at greater length if you wish, but I fear that there is nothing in the new bill to suggest that the situation will improve.
    

6. The new legislation also heralds the introduction of the "Single Gateway" to benefits, which entails yet further interviews to investigate claimants' capacity for work. Apparently, and almost unbelievably, these interviews are even to be imposed on those who are housebound.

   To provide help to find employment to those who may be well enough to work is laudable, but why, if this is the aim, must these interviews be compulsory? I'm afraid that most of the chronically ill will simply view them as a further attempt by those in authority to take away their benefits. One of our members had to undergo an All Work Test medical examination every six months for eight years.

   The "Single Gateway" will simply add to what is for many an already oppressive regime.

I hope I have managed to convey something of our objections to a bill which seems to us to be an unfortunate attack upon the chronically ill and I hope that you will find it in your conscience to vote against the bill when it next comes before you.

Thank you for taking the time to read and consider this letter.

Yours sincerely
Simon O, Chairman