Countess of Mar speaks up for people with ME/CFS tonight (29 April 2009)

April 30, 2009

Leading Parliamentary advocate for people with ME/CFS, the Countess of Mar, made another impassioned plea for the cause – during the Lords' second reading debate on the Welfare Reform Bill this evening (Wednesday, 29 April 2009).

Here's what the Countess had to say:

My Lords, unlike the Minister, I am not sure whether this is the right time for Part 1 of this Bill to be considered. As others have said, the economic climate is far from encouraging, and unemployment is rising rapidly while job vacancies are falling. While I entirely agree with the Government that no one should be allowed to exploit what we euphemistically call “the system”—in reality our tax-paying citizens—I cannot see the benefit of expending vast amounts of money and time on pretending to make a small group of vulnerable people supposedly fit for work. It is as though the Government’s reform policies must proceed like some huge juggernaut, crushing all that gets in its way and ignoring the collateral damage. It is wrong to push these changes through at a time when the social security system is already extremely stressed. Passing the buck to the private sector is unlikely to be a solution.

My noble friend Lady Meacher spoke passionately for the mentally ill. I declare my interest as chairman of Forward-ME and as patron of a number of CFS/ME charities which represent people with chronic fatigue syndrome or myalgic encephalomyelitis. These people suffer from symptoms of fluctuating frequency and severity. Gulf War illness, fibromyalgia and irritable bowel syndrome are some of the others. With regard to CFS/ME itself, this illness has been defined as a neurological disease by the World Health Organisation and the level of disability it causes has been compared with congestive heart failure, multiple sclerosis, rheumatoid arthritis and other chronic conditions.

Like the noble Baroness, Lady Meacher, I am beginning to feel like the proverbial gramophone record; or should that be a CD? The majority of people with CFS/ME want to work. In a recent national consultation with 1,162 ME sufferers and their carers, entitled No one written off: problems and potential solutions for people affected by chronic fluctuating conditions, one of the respondents wrote:

“The Government seem to think people actually LIKE to live their lives on benefits. The genuine claimants don’t want to be on benefits but have no choice”.

Another asks a question which is pivotal to this Bill:

“How many employers realistically would be flexible enough to accommodate a gradual entry (or re-entry) into the workplace if a healthy equally well qualified person also applied for the vacancy? You’d appoint the healthy person, wouldn’t you?”

I ask the Government—how many employers will employ a person who is able to do perhaps one or two hours a day or one or two hours a week and may not, even then, be reliable? Where is the research that shows these measures will work? I also suggest that this constructive report should be essential reading for all DWP and agency staff who might be dealing with claimants suffering from this condition. It is short, clear and contains many helpful suggestions.

Despite the growing body of evidence that these illnesses are biomedical, there is still a school of thought that they are psychosocial behavioural conditions and that they can be overcome with firm handling, a course of cognitive behaviour therapy and graded exercises. It is apparent that this view still prevails in the DWP. This is so despite Ministers’ repeated assurances that they and the Department for Work and Pensions’ employees and agents fully agree with the Department of Health statement that they,

“accept the World Health classification of CFS/ME as a neurological condition of unknown cause”,

and that they also accept that,

“CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition”.

If this is the case, why is it that I still get letters from acutely distressed people with CFS/ME who are being hounded by the DWP to attend interviews and who are threatened with loss of benefits if they do not comply with the regulations? This Bill compounds the problems that have emerged from last year’s welfare reforms. The language is harsh, the sanctions punitive and the rule inflexible. It appears that decision-makers will use subjective rather than objective measures as a basis for their plans. If a person looks all right, as many people with CFS/ME do, it is likely that they will be considered well enough to work. Past experience has shown that, no matter what the claimant tells the decision-maker or what his medical notes indicate, a claimant with a fluctuating condition is likely to be,

“directed to undertake a specific work-related activity in certain circumstances”.

The Minister spoke about eliminating discrimination. To quote again from the report:

“As the model of illness implicit in existing DWP practice and the in the proposed reforms makes no allowance for chronic, varying and relapsing illnesses, it institutionally discriminates against such conditions. The fact that people with ME cannot readily convey the reality of their illness experience on existing assessment forms or in early assessment interviews shows that, from the first interaction, such illnesses are discriminated against”.

Like my noble friend Lord Rix, I am worried that there is no indication in the Bill of the level of training that will be required of the advisers and decision-makers or, if they are to be supplied by contract with the private sector, what practical and ethical checks will be made on their decisions. What understanding will they be expected to have of these fluctuating conditions or of the likely effect of a wrong decision on the health of the claimant? Is the Minister able to enlighten me?

The noble Baroness, Lady Hollis, spoke powerfully for rural inhabitants. As a rural inhabitant, I am sympathetic and I heartily support everything she said. There are several other parts of the Bill about which I am concerned, but I will not delay your Lordships any longer. I look forward to the next stage with interest.

In his reply to the debate on behalf of the Government, Lord McKenzie of Luton said:

The noble Countess, Lady Mar, asked how the system will work to assess people with fluctuating conditions. I know that she feels strongly about that issue and has raised it before. There will be circumstances where mandatory intervention is clearly inappropriate. Those with the most severe disabling conditions will be in the support group and personal advisers will have the ability to defer work-focused interviews where a person is clearly not able to attend or to take part effectively. That will be particularly useful with regard to conditions such as MS which fluctuates in its effects. It is part of the standard safeguards that the personal adviser will consider in the context of each work-focused interview and whether the interview should be waived or deferred.



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