The Leeds and District M.E. Group represents people who suffer with M.E./CFS in the Leeds and Wakefield areas. We have approximately 360 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.
We agree that there is a need to reform the system of benefits payments to the disabled.
People who suffer with M.E./ CFS are advised to avoid stress, as this may make their illness worse and reduce their chances of recovery. However, under the present system, a large proportion of our members are subjected to a great deal of stress due to frequent reassessments by the DSS of their benefit entitlements. Many people are reassessed at twelve-monthly or even six-monthly intervals.
One of our members was sent for a medical examination every six months for a period of eight years.Bearing in mind the time spans involved in filling in the form, waiting for a response from the DSS, waiting for the medical examination, and waiting for the result of the medical examination, this meant that she was under constant threat, day after day, of having her benefit removed.
As our experience suggests that unfortunately most of our members do not recover from their illness, it seems to us that these frequent reassessments are an unnecessary source of stress and a waste of government money.
The present system does not appear to achieve its aim of rooting out scroungers. The chief purpose of the All Work Test medical examination for Incapacity Benefit seems to be to establish inconsistencies in, and deviations from, the information given on the IB50 form. As such, it seems to be more a test of wits than of incapacity. This is particularly so in the case of M.E./ CFS, where the fluctuating nature of the incapacity makes the form very difficult to complete in the first place.
As an example, one of our members was asked how it was that she was able to make breakfast for herself, when she had stated on the form that she was unable to lift a saucepan or kettle of 3 pints capacity. She pointed out that she did not need to fill a kettle with three pints of water to make a cup of tea for one person.
This kind of battle of wits is often very difficult for M.E./ CFS sufferers, whose powers of concentration can often be affected by their illness. A clear-headed scrounger would no doubt find it a great deal easier.
When our members have their benefits taken away, the majority seem to have them reinstated if they appeal or go to tribunal. As the appeal process is another source of stress, however, some of those who are able to scrape by without their benefit are discouraged from appealing. Once again, therefore, the system seems to be rooting out the wrong people. It is a question of who is strong and determined enough to withstand the process, rather than who is incapable of work.
It seems to us therefore that someone who is scrounging, and actually well in mind and body, is much more likely to be able to undergo the arduous trials of the system than someone who is genuinely ill.
We hope the reforms will reduce this burden of stress on our members and so improve their chances of eventually becoming well enough to work again. However, the statement in the Green Paper that the new test for Incapacity Benefit will concentrate on what people are able to do, rather than what they are not, does not sound encouraging. As the process of finding out what someone is not able to do in any particular field automatically implies what they are able to do, and vice versa, the new proposal does not sound substantially different from what we have already.
A change which would help M.E./CFS sufferers would be for the new test to take proper account of the nature of their disability. The questions on the present IB50 form ask whether the claimant is physically capable of carrying out specific tasks. The truth is that most M.E./CFS sufferers are able to carry out most of these tasks - once. But the reason they cannot work is that to continuously carry out these tasks would swiftly make them exhausted and eventually lead to a long-term deterioration in their condition.
The form asks whether the claimant is able to pick up and carry a 2.5 kilo bag of potatoes. There is no mention of having to repeat the task. If a job could be found which required the employee to pick up a 2.5 kilo bag of potatoes, carry it a very short distance, and then lie down for the rest of the day to recover, then many M.E./CFS sufferers would be able to do it. But in actuality of course, employees are required to carry out tasks hour after hour and day after day. This is something which most M.E./CFS sufferers cannot do.
The form also assumes that the claimant's ability remains constant from day to day. Can you do this? Can you do that? This takes no account of the fluctuations which occur in M.E./CFS. Depending on whether the sufferer is having a bad day or a relatively good day, the answers will vary. So how are they to fill in the form?
Admittedly, the DSS has responded to such criticisms by asking claimants to explain all this in the boxes provided on the form. But this makes filling in the form even more daunting, and it is scarcely surprising that M.E./CFS sufferers, whose powers of concentration can be very poor, approach the task with great trepidation. And believe it or not, if they manage to do all this, they are sometimes criticised by the doctor in the medical examination for writing too much in the boxes!
What is needed is a test which incorporates allowance for the varying nature of disability at the stage of the test's conception, not as an afterthought.
Even if this can be achieved, an important question remains. Why, once it has been established that someone is genuinely ill, can it not simply be left to them and their doctor to determine when they are capable of returning to work? At present, untold numbers of disabled people are suffering under a harsh system because of the need to root out a handful of scroungers.
We point to the lesson of the Benefits Integrity Project, in which, according to press reports, only 50 cases of potential fraud have been discovered out of a total of 55,000 reassessments. We hope that the reforms will put a stop to such unnecessary stress and wasting of government money as this, and the present system in general, have produced.
The Green Paper states that the Government "are committed to the importance of cash support to meet the extra costs of disability". But is the Government aware that these needs are not being fully met by the present system?
To use myself as an example, the maximum distance I can walk is about 600 yards. Therefore, as the present guidelines restrict the payment of the mobility component of the Disability Living Allowance to those who are scarcely able to walk, I cannot get help with my transport needs. But I cannot walk as far as the nearest bus stop, so I have to go everywhere by taxi, which costs me a great deal of money.
I know there are many other M.E./ CFS sufferers (and people with other conditions) who also do not get the financial help to which a fair system would entitle them. The Green Paper speaks of extra resources for the most severely disabled, but is someone who can only walk 600 yards not also entitled to help to meet the extra costs of their disability?
It is our experience that the minority of our members who do show substantial improvement very much want to get back to work, but at the moment the system works against them doing so. The present system of "therapeutic earnings", whereby those on Incapacity Benefit are theoretically entitled to work up to a certain number of hours per week without losing their benefit, is not working. Organisations such as the CAB, who advise on benefit issues, recommend that, in the present climate of mistrust, any attempt to go on therapeutic earnings will be taken by the DSS as an excuse to withdraw benefit immediately. Therefore no one dare make use of this facility.
This is particularly unfortunate in the case of M.E./ CFS, where anyone who reaches the stage where they can contemplate returning to work is unlikely to be able to withstand the impact on their health of going straight into a full-time, or even part-time, job. A very gradual increase in the number of hours worked over a long period of time is the only way in which a successful return to employment is likely to be achieved. Even in such a case, there is still a great likelihood that such an increase in activity will result in a worsening of the illness. It is vital therefore that anyone attempting to return to work should have the long-term safety net of being able to go back onto benefit, without undue hassle, if this becomes necessary.
Perhaps the most encouraging element of the publicity surrounding the proposed reforms is the government's stated determination to address this difficult issue of returning to work. We applaud this, but ask that any new arrangements be made as flexible as possible, so that M.E./ CFS sufferers are able to increase their level of activity in line with the restrictions of the illness and so increase the likelihood of eventual success.
Unfortunately however, as I have stated before, the vast majority of our members do not seem to reach the stage where they are able to return to work.
The Green Paper states that a measure of the government's success will be "an increase in the proportion of people with a long-term illness, and disabled people of working age in touch with the labour market".
"In touch with the labour market" is a curious choice of words. What does it actually mean? Why could these words not simply be replaced with "working"? Is this choice of words an acknowledgement of the fact that, as we are far from full employment, the majority of the sick and disabled would not actually be able to find jobs even if they were well enough to be able to seek them? The term "in touch with the labour market" therefore conjures up a picture of large numbers of the sick and disabled keeping "in touch with the labour market" by trying to seek employment which they are not able to get, meanwhile not receiving Incapacity Benefit and so saving the government money. Would this really be a measure of success?
Another measure of success is described as "a reduction in spending on Incapacity Benefit, as the number of claimants falls, with more resources available to help severely disabled people with the greatest needs". How exactly is this reduction in claimants to be achieved? As the Benefits Integrity Project shows, the number of fraudsters actually found tends to be considerably lower than estimates suggest. So where else can this reduction come from?
While the aim of making more resources available to help the most severely disabled is to be applauded, the implication is that these are to be funded by taking away benefits from those who are less severely disabled and putting them, as the Green Paper expresses it, "in touch with the labour market". As an organisation which represents people with a long-term illness, most of whom are not well enough to work, this prospect naturally causes us great concern. Perhaps we are reading the Green Paper incorrectly? But it is difficult to see how else such a reduction in the number of Incapacity Benefit claimants is to be achieved.
If all but the most severely disabled are indeed to lose their Incapacity Benefit and be put "in touch with the labour market", then it becomes particularly important to know what the Green Paper envisages by "severely disabled". One of the many problems facing M.E./ CFS sufferers is that our disablement is, for the most part, invisible. We therefore find it particularly difficult, even under the present system, to gain access to the benefits and services we need. If the reforms are to usher in a new age, in which more of the long-term sick and disabled are to be expected to work, then we feel we shall be particularly vulnerable.
We need the government to understand that severe disablement can be invisible, and that long-term sickness, in the case of M.E./ CFS, usually entails a long-term inability to return to work.
The Green Paper speaks of a need to make savings, but is it not true that Britain's health and welfare budget is already the lowest per capita in northern Europe? We hope therefore that the reforms will concentrate on establishing a fairer system, rather than on saving money, and that the failings and injustices we have outlined above will be taken into account when they are finalised.
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.
