Comment on
Comment on
The Leeds and District M.E. Group represents people who suffer with M.E./CFS in the Leeds and Wakefield areas. We have approximately 400 members, whose level of disability varies considerably. At one end of the spectrum, a minority of our members are able to work. At the other, we represent people who are house-bound or bed-bound and need a great deal of help with their everyday living.
The following comments on the above document make reference to our previous response to the Green Paper A New Contract for Welfare.
a) In our previous response, we described the stress which is placed on our members due to frequent reassessments of benefit and the negative effect which this has on their health and their chances of recovery. We are disappointed to see that there is nothing in the current document to suggest that this situation will improve.
b) In our previous response, we also commented on the nature of the All Work Test and its unfairness and inaccuracy in making assessments of eligibility for benefit. We shall have to wait for the introduction of the revised test (or else the release of more information about it) before we can tell if this will offer any improvement. We should like to request once again however that, in the development of this test, particular attention should be given to its suitability to deal with conditions such as ours where:
Please refer to our previous response for more information about these points.
c) A particular matter of concern in the new document is in Chapter 2, para 19: "We will make it clear in legislation that people have a responsibility to report improvements in their medical condition which may affect their entitlement to benefit". This may cause difficulties for people with a fluctuating illness. Progress in M.E. is achieved only very slowly, and with many ups and downs along the way. How many of these fluctuations should be reported? If we report them all, are we to undergo a further test by the DSS each time? But if we do not, are we breaking the law? Either way, this is likely to be an additional source of stress which will once again mitigate against recovery. We hope that the legislation will take this problem into account.
Changes are proposed in this document which will restrict the benefit entitlement or reduce the level of payment for many of our future members (either because they were not in work in the two years immediately prior to their illness or because they have some other source of income, such as a works pension). While the document goes to some lengths to explain the reasoning behind these changes, we believe it is unfortunate that the financial burden upon some of those who are unlucky enough to develop a chronic illness is to be increased, and we would like to draw attention to two elements of this burden which you may not have considered:
Your new proposals will increase the incidence of these inequalities.
a) Unfortunately only a minority of our members show sufficient progress to enable them to get back to work, but we naturally welcome any measures which make it easier for them to do so. We were therefore very pleased to read in Annexe 4, para 17 that "people on incapacity benefits who take a job and then have to return to benefit within a year can now return to their old rate of benefit rather than to a lower rate".
As an M.E. sufferer who attempts to return to work is likely to be uncertain of a successful outcome, this change is most welcome, as it will reduce an important disincentive to attempting to return. However, the fluctuating nature of M.E. means that relapses can occur after periods of longer than a year, and a time limit of two years rather than one would therefore be preferable. Would it be possible to set such a longer time limit for illnesses which are of a fluctuating nature?
b) The other measures announced in Annexe 4, Paras 17 and 18, relating to voluntary work and payments during a trial period of employment etc. also sound promising. However, as we stated on pages 3 to 4 of our previous response, under the present system any announcement by a claimant that they wish to try therapeutic/voluntary work seems to lead automatically to their benefit being stopped pending reassessment. Naturally this acts as a disincentive to anyone attempting to try such a thing, and we hope that consideration will be given to relaxing this regime so as to make the possibility of such a partial/interim return to work more accessible.
We have stated above a few brief comments on some of the more important aspects of the document. Due to the very limited time period you have allowed for the consultation, especially including as it has done the Christmas period, we have not had time to produce a more comprehensive response or to consult fully within our committee. As many of those such as ourselves who will wish to comment on benefits reform are ill, and are necessarily therefore rather sluggish to respond, we hope you will consider permitting a rather longer consultation period for any future documents.
Also, as we had already responded to the Welfare Reform Green Paper, would it not have been possible for you to send us a copy of the summary version of this subsequent document as a matter of course - or at least to let us know that it was available for consultation? As it was, we were only aware of the existence of the current document because Jon Trickett, the M.P. of one of our members, kindly sent us a copy in November.
If it is not your intention to send out any future consultation documents to those who have previously responded, we would appreciate any advice that you can give us as to how we can make ourselves aware of their existence as soon as they are published, so that we can commence any response we may wish to make as swiftly as possible.
We hope that you will find our comments useful and that you will take them into consideration as the reforms proceed.
Leeds & District M.E. Group
January 1999
You are welcome to quote from this document and to use the information in your own campaigns for the benefit of people with M.E.
