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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

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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—

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 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

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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 instructions 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

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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,

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.

Baroness Afshar: As a disability contact person in the department of politics at the University of York, I have found that it is impossible even for the most sympathetic supervisor to know when their students are going through a bad phase. As a matter of policy, the university makes it the responsibility of the teachers, not the taught, to notice when their students are not doing well. The university has a whole department devoted to dealing with the problems that their students face. If intelligent, articulate students are not made responsible for saying that they have problems, and if it takes a good year for any of their problems to be dealt with, how can an adviser in one meeting be able to cope with problems which are not easily soluble?

Lord Skelmersdale: I am going to have to put my slightly provocative hat on. It occurs to me that the worse the level of training, the greater the level of appeals, which I think is the main thought behind the amendment proposed by the noble Countess, Lady Mar. I make no apology for opening my few remarks on the noble Countess’s amendment by saying that it is right that if we are going to have individual action plans, we must make sure that they take account of the individual. As the noble Countess has said, if a person suffers from a fluctuating condition, it will have a very different impact on their ability to undertake that obligation of work-related activity than if they had no condition at all, or different even from someone who suffers from a consistent and predictable condition.

If the plans are to be as individually tailored, as the Minister says, we must assume that such fluctuating symptoms will be taken into account. But the basic question is how. Who will take this into account? We heard a horrifying story from the fairly long letter which the noble Countess read out. It is clear that the individual or individuals conducting the computerised assessments that we learnt about during our discussions

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of the new employment and support allowance simply were not up to the job. That may not be entirely their fault. It may be that the individual in question was more able at that moment to carry out the individual tests that are required than she would be if she went home.

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.

3.45 pm

Amendment 90 is the significant one in this group, referring to the training of the provider to recognise symptoms, which is what I have been trying to explain in a nutshell. I expect that we shall have a good deal more to say on this matter as there are more amendments on the horizon dealing with it. The training of staff who will operate these schemes is the key. Putting on my pseudo-civil servant hat, I am afraid that this amendment is probably in the wrong part of the Bill. It is so fundamental that it should be there well before we get to the matter of directions. The Minister will probably have something to say about that. I certainly understand all the points that have been made this afternoon. I wish that I had a golden rod to solve them, but I am afraid that I have not.

Baroness Murphy: I have an extra question for the Minister. I was struck, as always, by the noble Countess, Lady Mar, and her description of the problems of chronic fatigue syndrome and ME. One of the problems that she highlighted was the poor approach by the medical adviser who rated the condition. It is a long-standing difficulty that the doctors doing the assessments have been rather the creatures controlling the gateway to money. They are not always sensitive to mental health problems, the type of syndromes described by the noble Countess, or the more sophisticated and difficult medical conditions. They are not well trained to assess them.

We have the same problem with people looking for benefits such as attendance allowance, where little thought is given to the fluctuating nature of dementia, for example. I am not sure where this comes in the Bill but I wanted to add the question: are we sure that the medical advisers are also properly trained?

Baroness Hollis of Heigham: Like other queries that have been thrown at my noble friend over the past few Committee days, this is an insoluble problem. On the one hand, people with fluctuating disabilities may want to enter the world of work, and for that they must remain attached to the labour market. However,

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there is a further dimension because of the nature of their illness. It is not just that personal advisers can inevitably respond only to what is presented to them during the half-hour interview when we know that the condition may change within the day, as the noble Lord, Lord Skelmersdale, said, or within the week, and so on. The doctor making the assessment may be poorly trained but an employer of someone with a fluctuating condition can face a difficult situation, too. Will employers come up against the Disability Discrimination Act when they have an employee whose patterns of attendance are so unpredictable in a job which requires reliability of contact or interfacing with the public?

This is a huge problem that has troubled the DWP, and the DSS before that, for 15 years. I know that it is almost impossible, and I am referring not only to MS, but a range of conditions, including depression and so on, which have cyclical patterns. It is not just a problem for the adviser or the doctor; it is going to be a problem for the future employer. Therefore, one thing that a specialist adviser for the department may be able to do—I do not know, because this is so difficult—is to think about the situation from the point of view of the employer and think about work-related plans and activity and preparation for work that reflects not just the condition of the individual but makes that individual have a chance in the job market. Otherwise, all that investment will be as naught.

We are asking a huge job of the personal adviser: not only to have a very sensitive and skilled interviewing capacity, like the doctors, but also to understand the needs that an employer may have for that person, who may be wishing but worried, apprehensive and frightened about going back into the labour market. We have done a lot about linking rules and all that sort of stuff, but I wonder whether my noble friend could reassure us that personal advisers will not just be given extra skills to understand and respond to the needs of the employee but are actually thinking about how the employer would respond—and, frankly, not simply sack the employee at the first available opportunity.

The Countess of Mar: The Minister may recall that this subject has come up on numerous occasions at Question Time, and I have asked which employer would take on someone with any serious problem.

Lord Skelmersdale: Before the Minister responds to this short debate, perhaps I might be allowed a supplementary. I mentioned the computer-aided assessment, which was the substance of the letter read out by the noble Countess, Lady Mar.

The Countess of Mar: She was examined by a doctor.

Lord Skelmersdale: Sure. But I mean the DWP medical team uses a computer-aided assessment to make a final assessment of the individual’s problems. This is now up and running. Can the Minister tell me whether the situation has got any better? When we last discussed the matter within the context of the first Welfare Reform Bill, this was going to be the all-singing, all-dancing thing that would cure everything. Has it?

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Lord McKenzie of Luton: I thank the noble Countess for these amendments. She raises again an important issue that she has campaigned about for a long time. I have received a copy of the letter, but I hope she will forgive me for not having had a chance to consider it in any detail. It would not be possible for me to comment on a specific case, but I shall make sure that the letter is passed on to the district manager and given in evidence to those looking at the assessment of the WCA.

I agree with the noble Countess that it is extremely important that, when issuing directions to undertake work-related activities, personal advisers must have regard to a customer’s medical condition. That would include taking into account whether the condition is likely to fluctuate and the impact that that may have on the customer’s ability to carry out the direction. They must, of course, have received adequate training to enable them to do that. It may help to reassure the noble Countess if I outline the safeguards built into the system to protect the progression-to-work customers with fluctuating health conditions.

Amendment 90 relates specifically to training of personal advisers. As we discussed under the previous amendment, they are key to the successful delivery of this model. We will develop a workforce development strategy to work through the implications of the adviser role, which will also enable us to develop, with the help of our stakeholders, comprehensive additional training material for personal advisers to enhance the knowledge and skills necessary to deliver this more personalised approach and ensure that they do not ask too much of an individual. However, it is already the case that Jobcentre Plus pathways advisers receive training on a range of mild-to-moderate health conditions. In provider-led pathways areas, advisers are also trained on a range of health conditions and work with a range of specialist organisations on which pathways advisers can seek advice and support.

Jobcentre Plus personal advisers are able to seek advice from specialist disability employment advisers and work psychologists with regard to customers with complex needs. If they feel it is appropriate, advisers may refer customers with complex conditions to DEAs and work psychologists, as we have just discussed, for additional advice and support.

Turning to Amendment 93, the work capability assessment has been designed to take better account of these fluctuating conditions. In the face-to-face assessment, the healthcare professional carrying out the WCA and the work-focused health-related assessment should also analyse an individual’s functional capability over time. It is not a snapshot of a person’s condition on the day of assessment.

During the early stages of their claim, an ESA customer will undergo a work-focused health-related assessment completed by a healthcare professional. A report of the work-focused health-related assessment will be produced and sent to the customer’s personal adviser. The report will flag up whether the customer’s health condition may fluctuate and the impact that this is likely to have on the customer.

I assure noble Lords that the power to direct progression-to-work customers to a specific activity

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will be used only in a very small minority of cases. Advisers will always encourage, persuade and support people into activity they genuinely feel is necessary.

This brings me to Amendment 55. As stated in Clauses 2 and 8, any direction to undertake an activity must be reasonable and have regard to the person’s circumstances. Hence, any direction to undertake an activity by the personal adviser must be appropriate to the customer’s abilities and circumstances. That would include taking into account any fluctuating health condition that the customer may have.

If, for any reason, the customer was directed into an activity which they felt was inappropriate the customer could ask for the direction to be reconsidered and it could then be varied or revoked. If the customer does not comply with the requirement to undertake an activity because they were not able to do so due to the fluctuating nature of their condition, they will be able to raise this as good cause for their failure to comply. This will be covered in regulations.

It might be helpful—I am conscious—

Lord Skelmersdale: Surely they should not have got to that point; it should have been recognised far earlier.

Lord McKenzie of Luton: Indeed, the purpose of the process is to identify and bag up these issues right at the start of the process of an ESA claim. Clearly issues might arise and mistakes might be made. Notwithstanding recognition of the fluctuating nature of the condition, a direction may be made that somebody thought was consistent with that, and it proves not to be. These things will happen.

I am conscious that I am talking for too long, as noble Lords have indicated, but I want to make sure that I get something on the record in relation to this about the evidence-gathering procedure. When an individual makes a claim for ESA, this is supported by medical certification from their GP to confirm that the individual has a health condition or disability. That is the starting point. Individuals are provided with a questionnaire in which they detail their functional capability. If this indicates that an individual is likely to be in the support group or to be treated as having limited capability for work—for example, as a hospital in-patient or currently receiving a course of treatment—then Atos will procure evidence either from the individual’s GP or the relevant healthcare provider to confirm this, and the evidence is treated as a medical fact. If an individual is called to a face-to-face assessment then they are able to bring with them any relevant evidence to support their claim for benefit. That may include a report from their GP or specialist. They are also encouraged to bring a companion if they want to.

I say to the noble Baroness, Lady Murphy, that the role of Atos doctors is not meant to be as keepers of the gateway to funds. That is not their role and I hope that it is not in practice.

The WCA assesses an individual’s functional capability as a result of their condition. The healthcare professionals carrying out the assessments are therefore trained in disability medicine in order to access that capability. They also receive ongoing medical education in order

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to remain up to speed with developments in the field of disability medicine. This includes training on the need to inquire about variability in an individual’s capability, both day to day and in the longer term. The criteria by which an individual is assessed require that they be able to carry out an activity reliably and repeatedly for the majority of the time. If they are unable to do so, they are considered unable to carry it out at all. So fluctuations, irrespective of their frequency and duration, are therefore reflected by the practitioner providing an opinion based on the individual’s capability for the majority of the time.

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