ME in Westminster: Debate: Welfare Reform Bill 18 June 2009

Source: UK House of Lords
Date: June 18, 2009


Welfare Reform Bill

Amendment 55 – Moved by The Countess of Mar

55: Clause 2, page 7, line 5, at end insert –
‘( ) must be reasonable, having regard to whether the person has a condition with fluctuating signs and symptoms, and the nature of that condition;’

The Countess of Mar

I shall also speak to Amendments 90 and 93. In doing so, I declare a non-pecuniary interest as chairman of Forward ME and patron of a number of ME charities. The amendment moved by the noble Lord, Lord Rix, was about people  who want to go to work and are sometimes not thought fit to do so. I want to discuss people who are deemed fit to go to work but who are not fit to do so. The Minister will understand from long experience why I am concerned about this particular group of people. I explained in some detail at Second Reading the problems that they have when encountering the benefits system.

ME, or CFS/ME as it is known by some, is a condition that affects approximately 250,000 people. Many are young and a majority are women. Some who developed the illness in their teenage years have never been able to work; they have not qualified for contribution- based benefits and are totally dependent on income support. I wish that I did not have to say it again, but I feel that I must. CFS/ME is recognised by the World Health Organisation and the Department of Health as a neurological disease of unknown aetiology. Some 5,000 peer-reviewed and published scientific papers indicating various aspects of the central nervous, immune and hormone systems that are affected go some way to explaining the fluctuating nature of the condition. Yet, the view persists that this is a psychosomatic illness that is easily cured by a course of CBT and GET.

In 1994 I met Dr Aylwood when he was head of the Benefits Agency medical services. At that stage, he arranged for the doctors? training manual to be rewritten to take into account people with fluctuating illnesses. Fifteen years on, the message has still not been received. I do not know whether the noble Lord has received a copy of the letter that I left for him yesterday. It is a letter from a lady called Jayne Thomas who wrote:

‘Dear Countess,
I am enclosing, for your information, a copy of an appeal letter that I have just sent to the Department of Work & Pensions/Job Centre as they seem to think that my condition has no impact on my ability to work’.

I have no compunction about reading this letter because it says exactly what I have been trying to say for years. This is her appeal letter:

‘With reference to your decision to stop the above’

– her ESA claim –

‘I am writing to appeal against this decision as I believe it is wrong and was stunned to see that you have given me 0 (ZERO) points for my claim. Firstly, please note that you sent the ESA65 to the wrong address’

– we go back to the comments of the noble Lord, Lord Rix, earlier this week –

‘(I advised you at the end of April and many times since of my new address), the letter advising your refusal to continue to pay me arrived at the right address at the top of this letter. Both these letters had the same date on them and I would appreciate it if all future correspondence has the right address (as at the top of this letter). This may explain why a cheque went missing at the beginning of May (I am still awaiting reimbursement for this missing cheque). I would like to appeal on the following grounds;

1. At the medical assessment the Doctor from your contractor, ATOS, saw me for just 20 minutes and assured me that NO decision would be made to stop my ESA without full consultation with my GP/specialists who have been seeing me since my illness began. I spoke to my GP/ Specialist yesterday and they confirm that they have had no correspondence with yourselves.
2. With reference to your ?point scoring?, I disagree as follows;
a. Walking 0 points
I have explained to you that I am unable to walk any distance without exacerbating my condition and increasing the pain in legs. At times, I am unable to walk even short distances and a specialist only recently suggested that I may have to ask the school, where I take my son, that I get special permission to drive onto the school site to avoid the walk from the car to the school.
b. Standing & Sitting 0 points
Again, I have already explained that I cannot stand in one position for very long at all and if I sit down for too long, the pain in my legs becomes intolerable.
c. Bending & Kneeling 0 points
Again, I explained that I am totally unable to kneel or squat. When your Doctor at the assessment asked me to squat, I was unable to do this and he urged me to stop when he could see I was in pain.
d. Remaining Conscious 0 points
The extreme fatigue I suffer from can cause periods of debilitating tiredness.
e. Memory & Concentration 0 points
My condition causes short-term memory loss and if I push beyond my boundaries, concentration can become very difficult. If I try to read a novel, I am restricted to only a couple of pages where I can concentrate on the plot, if I push on I end up in pain (this was explained to your Doctor)
f. Starting Jobs & Keeping on with them AND Doing & Finishing Jobs 0 points
I have explained to you that I am unable to start some tasks, let alone finish them. The debilitating fatigue and pain I suffer from can make performing a task such a cooking a meal very difficult and I quite often rely on my husband for this as I do for other household tasks’.

She then says – and this is significant:

‘By refusing to continue giving me benefit, you are saying that I am fit for work. I had held down a very responsible job, which I thoroughly enjoyed, for 10 years until I was dismissed on grounds of ill health on 27 February 2009. Both my employer and myself made every effort to get me back to work last year. I entered a long period of rehabilitation with them from July? the end of September where I gradually returned to work. I went back to work properly at the end of September but was unfortunately only able to sustain this return for 6 weeks. At this point, I suffered a terrible relapse which left me unable to cope with the most basic of tasks’.

I will not go on. I think that I have said enough to make it clear what is going on. I am aware that benefits claimants who have CFS/ME, when called for a medical examination or interview, will do their best to perform the tasks given to them. They will have rested for the day prior to their encounter. They may find it difficult to describe their illness or what they are feeling at the time because they have recognised cognitive problems. They may omit to reveal important factors because they are tired after travel. They will often be able to do what is asked of them physically but very soon afterwards they will collapse from their exertions and may take several days to recover.

I know that the noble Lord is aware of this. However, unless all DWP staff, including the agency medical practitioners and the contractors, are convinced that ME/CFS sufferers are not inadequate attention seekers looking for sympathy and are trained and made thoroughly aware of the nature of this illness, there is a risk that people with ME/CFS are going to be harassed and distressed and made more sick than they already are. Who will be legally responsible if a claimant complies with nstructions for fear of losing benefits and is made seriously or irreversibly more ill?

I have come across none who are not eager to be able to lead a normal life. They desperately want to be able to rejoin society and to become financially independent. Most have tried repeatedly to return to a normal life only to suffer repeated setbacks. This is why they are so strident in their requests to Her Majesty’s Government for funding for biomedical, rather than psychiatric, research into their illness. At the moment there is no definite cause or cure. This is not a reason to penalise sufferers or even to frighten them with threats of benefit cuts if they do not comply. I am not suggesting that everyone in this group should be left to moulder in their illness and not be offered assistance in an attempt to resume a normal life. I am asking that they are not penalised if they fail to meet the expectations of their adviser or cannot maintain a consistent work pattern.

There are a number of other illnesses in this group, such as irritable bowel syndrome, fibromyalgia and multiple chemical sensitivity, which equally should be recognised and their sufferers treated with sensitivity. I beg to move.

Baroness Thomas of Winchester

We are assured at every turn that those with fluctuating health conditions, such as ME, MS, rheumatoid arthritis and mental health problems, who are in the employment group of ESA, and therefore in the progression-to-work group, will be considered sympathetically by Jobcentre Plus staff before being directed to work-related activity. The now former Minister in the other place said that, ‘a person’s health is always considered, so there is no need for that to be prescribed in the Bill’. – [Official Report, Commons, Public Bill Committee, 24/2/09; col. 140.]
However, that is not the experience of many people with fluctuating conditions, as the noble Countess, Lady Mar, has so powerfully said today and on many occasions. It is all too possible for someone who is experiencing a good day when they see either a disability benefits adviser or a personal adviser for their condition not to be recognised adequately. The adviser should have a report following a work-related health assessment about a person’s condition, which indicates whether it is a fluctuating condition. I would be interested to hear if this is always the case. However, this assessment would not include any report from a person’s GP or consultant which might confirm the fluctuating nature of the condition. I wonder why that is so. It is a matter of public record that the new Secretary of State for Work and Pensions has suffered from ME. We therefore hope that she will be sympathetic to this point, if not to the wording of the amendment.


Lord Skelmersdale


Again, I have to declare an interest in that I have a son-in-law with severe ME. He finds that at moments he is able to do quite normal things. But then, a few hours later, he will collapse for another two, three, four or five days. If you have an assessment in a good period, it is extremely difficult- this was the point made by the noble Baroness, Lady Ashfar – to come to a realistic conclusion of what may happen in the rest of the week or month. How you train people to have proper observation or realisation of that fact is beyond me. But there must be better brains than mine around the system who could get to the bottom of it. Until we do, all hope for the people whom the noble Countess has been talking about is lost.


[Amendment 55 withdrawn].
(c) 2009 Parliamentary copyright