Scottish Parliament Public Petitions Committee Tuesday 2 October 2001

Myalgic Encephalomyelitis (PE398)

The Convener: The third petition this morning is from Helen McDade. It calls on the Parliament to urge the Executive to conduct a strategic needs review assessment on myalgic encephalomyelitis—ME—and chronic fatigue syndrome and to take other steps in relation to the treatment of, and research into, those conditions. Helen McDade will make a brief presentation to the committee. Alex Fergusson MSP is here, too. Before Helen McDade makes her introductory remarks, I wish to declare an interest. I am the convener of the cross-party group on myalgic encephalomyelitis, and I support the petition.

Helen McDade: I have with me Linda McLean, the mother of a severely affected 15-year-old girl who has been ill for three years, and Alan Stroud, a 17-year-old sufferer of ME, who has been ill for three years. I hope that the committee will appreciate that Alan had to make a lot of effort to be here this morning.

I am the mother of an 11-year-old girl who has been ill with ME for five and a half years. She has attended school for about 25 per cent of that period. When she became ill at five and a half, she wanted to be a ballet dancer and join the rainbow guides and the brownies. She wanted to go swimming and take up gymnastics and horse riding. She is now 11 and has not done any of those activities. Her childhood ended when she was six. Many children are like her and Linda McLean represents another such child.

We are here today because ME sufferers and their families are desperate. Members of the committee are one of our last shots. It is estimated that 15,000 Scots in Scotland have ME. That is more than the number of people with multiple sclerosis. Of that number, about 2,000 are children and of those children, 25 per cent are severely affected, which means that they are housebound or bedridden. Unable to stand noise, they may live in a darkened, soundproof room because of hypersensitivity and they may not receive support from anyone except, hopefully, their families. Many people live with such suffering.

Many families have more than one sufferer. It is not uncommon for a parent and one or two children to have the illness. If the committee can imagine so many people suffering in one household without support, I am sure that it will agree that something should be done for them.

A survey of 2,000 sufferers revealed that more than 51 per cent had considered suicide. That does not mean that the illness is necessarily a psychiatric problem, but it shows that such sufferers are desperate and in pain each day of their lives. Patient organisations estimate that fewer than 30 per cent of people with ME fully recover. Our statistics are provided mainly by patient organisations. The Government does not have any facts on ME, so it does not have any evidence on which to base decisions.

We want the Scottish Executive to undertake an epidemiological survey. We want it to find out how many people in Scotland have ME, how long they have had it, how severely affected they are and what treatment has helped or, indeed, hindered them. We also wish the Scottish Executive to find out whether benefits are being paid to people who clearly fit the criteria for such benefits. We are aware of many cases in which people are unfairly discriminated against because they suffer from ME. Benefits are supposed to be decided not on the basis of the illness suffered by people, but on their level of disability. Much of our evidence shows that benefits are not being decided on the level of disability.

We are also here today because we are angry. Many ME sufferers have to work out what is wrong with them. That can take them months or years. They then have to find a doctor who will say the words, "Yes, you have ME"—or chronic fatigue syndrome, as the medical profession wishes to call it. We do not accept that chronic fatigue syndrome is a suitable name for such an illness. Myalgic encephalomyelitis is at least as accurate a term, which is why we refer to it as such.

People have to guess what is wrong with them, all the time wondering whether they are suffering from something fatal because they feel so bad. They then have to seek a diagnosis. If they find someone who will determine that they are suffering from ME, they will probably be told three things: nothing can be done for them; they had best live as normally as they can and exercise as much as they can; and the illness will pass in about two years. None of those statements is correct. Many of the people who are severely affected consider that their state of health was brought about because they were told to exercise. There is a huge dispute and in the survey of 2,000 sufferers, "graded exercise"—as such an activity is described—was found by 40 per cent of those surveyed to be of no benefit or to have made the condition worse.

In view of such facts, what else do we need? We are asking the Scottish Executive to fund a Scottish specialist ME clinic. Many doctors, particularly hospital doctors, neurologists and paediatricians, do not believe in ME. It is hard to know what, "I do not believe in ME" means. That it might be a psychiatric illness is sometimes said explicitly, but more generally that view is implicit in the way in which people are treated.

A growing body of evidence says that the illness is a neurological and immunological disfunction. We want to present such evidence to someone who will take the matter on board. It should not be left to doctors and researchers to decide whether the problem should be examined; they have had at least 20 years to do something about it, and the illness is on the increase. We have the evidence to prove that much more needs to be done.

Doctors will not take the road to Damascus overnight. It is not acceptable for the Scottish Executive to say that this is a matter for local health boards. We shall not get from the position in which no health board or health trust in Scotland claims to have a national health service ME specialist to the position in which we receive a decent service and a clinic in each area with the necessary various specialities. That will not happen. We need a Scottish specialist centre, which can find out the best practice and pass it down the line so that people can at least be referred somewhere.

Our petition is not only about money. ME sufferers must be one of the few groups of sick people who could not care less if the Scottish Executive said tomorrow that another X million will be spent on the national health service. Sufferers already live in a privatised health world. The NHS is of practically no relevance to sufferers except in crises. Obviously, there are a few exceptions. General practitioners, in particular, are taking the illness on board and are doing their best, but if they have no backup that is of virtually no use, especially to the severely affected, who need proper medical assessment.

It is not only the health service that is involved. Even in economic terms, it is nonsense to consider the matter as a health issue and look to the health department to find a result on its own. We must consider the social security problem and the loss of production years. I am drawing attention to a time bomb. If young sufferers are not helped to get better and to have a productive life, what will be the cost to the country? What is the point of considering the problem as a health issue if people are not dealt with under the National Health Service?

Furthermore, refusing more sick people disability benefits and insurance payments will not keep the lid on the problem. Evidence shows that that is what happening. Obviously, insurance companies are worried about the massive increase in claims, and they are looking for excuses not to pay out. However, such matters may lead to the courts. Indeed, many severely affected people have considered taking action, which is a difficult task for ill individuals to do on their own.

I ask the committee to consider in environmental terms what folly it is to ignore the problem. Children with ME have been called the canaries of our society. However, we seem determined to keep on whistling our way down the mine.

The Convener: Thank you. I now open up the discussion to members of the committee.

Alex Fergusson (South of Scotland) (Con): I wish to say a few words in support of what Helen McDade has said. Like you, convener, I wish to declare an interest. I am the vice-convener of the cross-party group on ME. I have another interest, too. Two summers ago, my 15-year-old son was on the verge of being selected for the Scotland under-15 cricket team. This year, he is unable to hold the bat aloft for more than five minutes. I do not usually look for personal sympathy in such matters but, having a child with ME, I now see matters in a different light. Three years ago, I was as sceptical as many people are about the condition. It used to be called "yuppie flu"—a phrase that I now find disgusting. It is only fair to tell the committee that I am biased.

As always, Helen McDade has explained fluently the problems that are faced by the increasing number of people who have ME. It is important that members of the committee are aware that the condition is on the increase. Since my wife and I have become involved in the problem, the number of people who know someone affected by ME has astonished us. As the condition grows, the medical attention that is being paid to it seems to be less not more. I ask the committee to remember that the signatures on the petition were collected by ME sufferers. It was an incredible task and it required great strength and bravery.

Helen McDade mentioned the problem as it concerns children. I consider myself lucky, because there are affected parents whose circumstances are far less fortunate than those of my family. Social services have knocked at their door to take away their children because they do not attend school. Adults do not receive benefits. The fact that they can go to a doctor to fill in the questionnaire just means that they are having good day. Such matters are not taken into account. There is enormous medical disagreement about the causes of ME and, as Helen McDade said, whether it exists. Some people do not believe that it exists. The cross-party ME group has concentrated on that disagreement, but the fact that it exists backs up the need for the problem to come under the auspices of the national health service. Scotland has a wonderful chance to play a leading role in such matters within the United Kingdom.

The number of people who are examining the matter is increasing. Brave people take on the might of the NHS in an effort to increase its thinking about the problem. More weight is being given to the fact that ME is not a psychiatric problem that can be dealt with by someone saying, "Give me your child and I shall get him better, because I shall force him to get better by routine treatment." More and more people are beginning to realise that that approach does not work. There is a huge need for such an assessment and I hope that members of the committee will take the petition very seriously.

The Convener: Thank you. I draw to the attention of members of the committee the fact that 17,721 signatures are attached to the petition. ME sufferers made a Herculean effort to present a petition of such a size to the Scottish Parliament.

Phil Gallie: I first became aware of ME in about 1992, when I was elected a Member of Parliament. I had not really picked up on it before. Thereafter, I experienced a growing awareness of the illness. As Alex Fergusson said, many more people are now recognised as suffering from ME. Does that mean that the medical profession is waking up to the problem and that doctors are beginning to realise that a condition that did not exist several years ago does, in fact, exist and is an illness? Are they picking up on the serious aspects of it?

Helen McDade: There is growing awareness of the illness among GPs because the avalanche has started, and people cannot avoid it. There has been a change in thinking. Dr Nigel Speight, a campaigning paediatrician in England who takes such children on board, said that he had not seen a case in his practice before 1980. He now has about 50 such cases from his area on his books. He would be able to recognise such cases in retrospect, but he believes that he first dealt with such a case in 1980.

I do not believe that secondary schools had pupils with the problem on their books some 20 or 30 years ago. It has been found that pupils who suffer from ME are absent from school more often than those with leukaemia and other cancers. A study found that the illness accounts for 50 per cent of long-term absences. We could not have missed that 20 or 30 years ago. Something else is going on as well as GP recognition. I do not think that the hospital system has improved. I may be wrong, and other people may have had different experiences, but my experience and that of many people to whom I have talked is that consultants and those at the higher levels of the medical profession are in denial.

Phil Gallie: You identify in the petition the fact that not only health services are involved—social services, which are run by local authorities, are also involved—as is the benefits system, which is a Westminster issue. Those with whom you have made contact when pursuing this issue, about, which you feel strongly, are all involved in health. Have you contacted the Convention of Scottish Local Authorities and the bodies that deal with the benefits system?

Helen McDade: Most of our problem with the benefits system centres on medical assessment. Obviously, people contact their MPs and MSPs about social security issues and a host of problems. Our target is the discrimination of the medical assessment. Linda McLean is currently appealing for her daughter to receive disability living allowance. Apart from going to the toilet, her daughter has not been out of her bedroom for two years.

Linda McLean: The doctors who have visited my home have taken a strong psychiatric line on the illness of my daughter, Heather. No matter how many times they have seen her, they have assumed that her illness has a psychiatric basis. Their reports say that Heather can do certain things if she so chooses. I have that in black and white. The external medical practitioner's report is the one that is favoured by the tribunal. What others write does not count because the external examiner, although he may be a general practitioner, is considered to be especially trained to give an unbiased report. In fact, the report is very biased.

If a practitioner sees my daughter for a few minutes and concludes that she has a psychiatric problem, on what is that decision based? Heather could not speak when the first examiner came to see her, nor could she move her arms or her legs. He moved them. Later, when she could speak to him, she told him that she had felt like a rag doll. He lifted her legs and wrote a report saying that she was mobile and that if she chose to walk down the stairs, she could. The practitioner considered ME to be a controversial issue and in his view it was a psychiatric problem and a hysterical conversion.

The decision was overturned at the appeal group meeting. The matter went in our favour and our money was back-paid, but it was awarded for only six months. I therefore went to a tribunal last month and a medical practitioner carried out the same examination. Heather had improved slightly. She answered about six questions, but was too ill to continue. The doctor wrote in his report that Heather could come down stairs and that she should be able to walk 100 metres. At the end of the report, he said that she had a large functional overlay. So we are now back to the functional-somatic syndrome whereby sufferers acquiesce in their symptoms and receive loads of sympathy.

As Heather said to me, young people could not lie in bed as she lies in bed even if they were paid 1 million. They could not stay still in a dark room, unable to watch television, talk to people or see friends. There are no words to describe how terrible the condition is and how little it is understood. I have spent more than 1,000 seeking medical advice and help. I have bought books to become knowledgeable about the condition so that I can understand my daughter.

At one point, my daughter was so bad that I thought she might have CJD. There are people worse than her, such as the young fellow down the road. He has to be turned in bed. He cannot move. He has to be fed. He cannot lift his hands. The range of the illness needs to be made known. There is so much ignorance about the condition; the only way to combat that is knowledge, which is why I share my experiences with others. Heather has been on the BBC news highlighting the difficulties of ME. No doctor will visit her at home. Because of noise and light sensitivities, hospital—unless it has a dedicated unit—is not the place for sufferers. Noise and light cause Heather to have body shakes. Her muscles go stiff and she shakes. Obviously, we can cater for such needs at home, but we are scared to let her go into hospital, because people there do not understand the illness.

I have contacted a doctor in England. A doctor in America has carried out tests that have shown abnormalities in Heather's hormonal system. However, many doctors do not know the relevant tests to perform. Results of conventional tests turn out to be fairly normal and doctors do not know where to take them from there. In various parts of the world, doctors are examining the condition and have found problems for which no simple routine checks are carried out.

Phil Gallie: I have a short supplementary question. Linda McLean said that she has found a doctor in the United States of America. Is the lack of recognition of ME unique to the United Kingdom, or does it stretch throughout Europe and perhaps wider afield?

Linda McLean: ME is recognised throughout the world because there have been major epidemics, but when psychiatrists became involved in the problem, they broadened its base to include depressed people. That has made life very difficult—almost impossible—because, in a sense, we are being driven into a corner. We are scared to stick our heads above the parapet in case we are shot at—there is such a strong psychiatric stance. We have resisted that stance. If a doctor says over the telephone that some young people get themselves into a corner that they cannot get out of, I do not want my daughter going into that person's hands; he has no understanding of the severity of the illness.

Dr Ewing: As Phil Gallie and Alex Fergusson said, we all know someone with ME. One of my close friends in Lossiemouth is a sufferer. She is a beautiful young woman. She has two young children, but she cannot look after them. She lies in bed. She had a good job, too. We have all experienced the illness in a personal capacity. It is terrible.

There has been a great deficiency on the part of the medical profession. I, too, have heard doctors refer to the illness as "yuppie flu", a phrase that has never been defined. The treatment handed out by benefit associations is cruel and scandalous. I do not like the letter from Malcolm Chisholm. If that is an example of the attitude of the Scottish Executive, I am not happy with that either. I have asked the clerks about the committee's ability to compel witnesses to come before it. We cannot compel, but we can request. It is difficult for someone whom we want to come before us to say no. I would have great pleasure in cross-examining the head of the British Medical Association Scotland and putting to him the true experiences that we have heard about today. I want the medical profession to stop dismissing what is clearly a fact.

As I said, most of us here know someone who suffers from ME. Why are no statistics available? In this world of statistics, one would think that we could obtain the information that is sought by the petitioners, such as what proportion of people are severely affected, what are their benefit entitlements and what is the size of the patient population. We should be pressing for that information. Surely we can do that. The petition refers to the establishment of a clinical centre of excellence. That seems to require the benefit authorities and the medical profession to get off the fence and agree that ME is a fact of life. I know that the committee will do its best to take action, but in addition to what we suggest, it is terrible that the medical profession is treating individuals in the way that we have heard today.

The Convener: I do not think that that was a question.

Dr Ewing: It was not a question, but such remarks had to be said by someone. I am horrified by the evidence that we have heard.

Phil Gallie: Winnie Ewing did ask a question. It was about whether expert witnesses could be questioned by the committee.

The Convener: We can certainly do that. We shall deal with that matter when we discuss how to dispose of the petition.

John Farquhar Munro: In answer to Winnie Ewing's suggestion, the statistics will be confused anyway, because medics are not diagnosing the illness or referring people with such a condition. If 50 per cent of medics do not diagnose the condition, statistics will be of little advantage to us.

I was impressed by Helen McDade's presentation. She has obviously carried out much research and has a professional approach towards what she wants to achieve. She has hands-on, first-hand experience of people with this condition.

As we have heard today, many of us are acquainted with people who have ME. It is strange that GPs have a mixed view of the condition. Some would agree that something is wrong, yet they are not prepared to diagnose the condition. Helen McDade, from your experience of GPs who have accepted that ME is an illness, what medication do they suggest to alleviate the condition?

Helen McDade: Statistics would not be 100 per cent accurate, but it is possible to find out such information without a diagnostic test. Epidemiologists have the same problem with Alzheimer's disease. The statistics would be an underestimate, but that can be taken into account. About four or five years ago, Fife Health Board undertook a study to see whether there was a need for a specialist clinic. It received a good response. The study carried out by patient organisations suggested that they were in the same ballpark. Fife Health Board decided that there was enough evidence, that a clinic should be provided and that it would not necessarily cost money—but there is no sign of it going ahead. It is possible to find statistics in connection with ME, although they would not be as satisfactory as statistics for other conditions.

Treatment is another problem area. Linda McLean has obtained cutting-edge methods for her daughter and there has been a slight improvement in Heather's condition, which is great. Generally, if doctors treat the illness at all, they favour the anti-depressant line of treatment, whether or not there is evidence of depression. Anyone can be depressed, as can those with chronic illnesses. I am not saying that some people do not need anti-depressants, but the medics tend to diagnose them. The few treatments for ME sufferers that are suggested are cognitive behaviour therapy, graded exercise and anti-depressants. The studies of such treatments have been small and, in some cases, contradictory.

People with ME have a great problem in that they are usually hypersensitive to medication. Many doctors do not understand that their health can be made worse by it. We must bear in mind nutritional aspects of treatment and the opposite of graded exercise. Dr Darrell Ho-Yen, a doctor in the constituency of John Farquhar Munro, specialises in ME. He says that if someone without ME has 100 per cent energy and someone with ME has 10 per cent energy, the person with ME should use only 8 per cent of that energy and use the extra 2 per cent to help his body get better. Some specialists put forward a contradictory view of the illness compared with the average advice that is issued. Many GPs, however, admit that they do not know anything about it and do not know where to send sufferers. For example, I was told that there is no point in getting a diagnosis because there is no cure. People who have rheumatism are not told that. For children, a diagnosis is critical because of the help needed for their education.

John Farquhar Munro: I am on a learning curve about ME. Prior to being an MSP, I assumed that it was a condition whereby the patient was lethargic and drowsy. I was not aware that it went beyond that and caused physical incapacity. It must be frustrating for parents with children who have ME to discover that the medical profession shuts its eyes to it and says that nothing is wrong. That is a terrible situation to be in.

Helen McDade: That is one of the main reasons why we do not agree with the description "chronic fatigue syndrome". In fact, surveys have shown that 90 per cent of doctors could name fatigue as a symptom of ME. However, such a decision is made on the result of a diagnosis of about eight out of 14 people. Alan Stroud will explain his symptoms to the committee.

Alan Stroud: I suffer from extreme tiredness. Over the years, I have had a whole range of symptoms. To start with, I had a bad fever. I had bad headaches and sore and stiff limbs. I was not given an explanation for such symptoms. They all came under the heading of ME. I was told that eventually they would go away. I was not given specialised treatment for the problems. Most of the symptoms have gone away, but I still have bad problems with tiredness. It stops me living a normal life. I cannot attend school as I should like or do things with my friends. I am simply too tired. It is an effort to think of what to say when I am chatting to people. I cannot concentrate on work. Basically, I still have bad problems. My only help is that doctors say that my condition will go away eventually. They do not have any idea of what is causing my illness or what may help it.

Dorothy-Grace Elder: This presentation has been one of the most impressive that we have had. The eloquence of Mrs McDade and others is notable. I thank Alan Stroud, in particular, for attending the committee. As several members have said, we all know someone who has ME. That has happened naturally over the years, although they do not come to us often because we are MSPs. In previous lives, we have all known someone with ME and we know what it has taken for Alan Stroud to be here today.

Do any of the witnesses live in an area where there is a particular environmental problem?

Helen McDade: I wish to answer that question indirectly. Let us suppose that 18 people who have ME live in a tiny village. It could be asked whether the fact that there are so many sufferers reflects that environment. We do not have a statistical background, so it is hard to know whether there is an environmental problem, but it seems that there are clusters of people with the condition. Sometimes, I speak to people whose neighbours suffer from ME.

Environmental factors such as organophosphate pesticides have been mentioned. A study is being undertaken at Ninewells hospital in Dundee. It is comparing ME sufferers, Gulf war syndrome sufferers and organophosphate pesticide sufferers. Studies in other parts of the world are examining possible links between those conditions. I am not claiming that organophosphate pesticides have caused ME. The medical profession has a problem, because the word that we are looking for is "multi-factorial". ME is probably caused in most cases by one factor. As with cancer, it is a matter of genetics and toxins. We consider that environmental factors should be examined closely.

Dorothy-Grace Elder: Has any of the witnesses heard concerns expressed about pylons, toxic dumping and so on?

Helen McDade: I think that organophosphate pesticides might be involved in my daughter's case. We lived on the edge of oilseed rape fields that were sprayed. An incident happened in my family that I heard happened to Gulf war syndrome children. That was two coincidences too many for me, but I have no proof.

Dorothy-Grace Elder: I am not suggesting that environmental factors are the sole cause of ME, but there is speculation that they may increase the number of sufferers. I have always found it hard to accept those who disbelieve the existence of ME. Even in Victorian literature, references are made to characters who suffer extreme fatigue. Rich families used to send their relations abroad to recuperate. People were called invalids for nameless reasons. They could have had ME.

I first met someone with ME at a fatal accident inquiry. When I arrived, people were tittering about someone who was lying down in the witness room. They had surmised that that person was drunk. The lady raised her head and said, "I am not a drunk. I am suffering from ME." She was a doctor who was to be an expert witness in the inquiry. It had taken every ounce of her strength to travel to the inquiry.

However, giving the witnesses bucket loads of our sympathy will do no good at all. It is obvious that almost every parliamentarian will be 100 per cent on their side. Are specialist nurses assigned to the problem in Scotland?

Helen McDade: No, there is no such arrangement.

Dorothy-Grace Elder: Dr Ewing's suggestion about the committee questioning the head and members of BMA Scotland, members of the Royal College of Nursing Scotland and the medical tribunal is one way in which to make progress. We shall discuss matters when the presentation has finished. The Health and Community Care Committee must also be notified.

Alex Fergusson: A person made a telling point to the cross-party group. He is a scientist who indulges in research into some of the more strange syndromes that now exist. He said that it is eight times harder to receive funding for ME research than any other type of research. I believe that that statistic is worth bringing to the committee's attention.

The Convener: In his letter to Iain Smith MSP, Malcolm Chisholm said that it was for individual clinicians to decide the appropriate treatment in liaison with their patients, because of the complex nature of ME. Helen McDade, what is your response to that view?

Helen McDade: Given the complex nature of ME, it is entirely unreasonable to ask GPs to take such action. With the best will in the world, they could not do it. They have five minutes to attend to each patient, although patients can ask for a double appointment and then receive 10 minutes' attention. The minister is passing the buck. It is not correct for Malcolm Chisholm to say that because doctors will not make a diagnosis he cannot investigate the matter. The Scottish Executive must have statistics to back up its argument. It talks about evidence- based medicine. Well, we are all for it. The question is whether the medical profession is interested in it.

The Convener: My final question is about Alan Stroud and other young people who cannot attend school. What are the attitudes of education authorities and schools to such matters?

Helen McDade: Some people have received good responses. We have been lucky. I am talking about the local school. Many people, however, have problems obtaining help and, when the children reach the age of 16, the local authority can say that they do not need tuition even if it had been set up in previous years. If the young people have missed years of schooling and their health is beginning to improve, obviously that is the time when they should be receiving tuition.

ME sufferers are a particular problem for secondary schools, who find them difficult to deal with. Schools want to keep up their statistics: they want a high average level of passes and a low average level of absences. I know of children whom schools are trying to remove. They are regarded as a nuisance. The schools do not know what to do: they think that the children want to arrive at school at unusual times just for half an hour or three quarters of an hour and believe that they will pass hardly any examinations.

My daughter's case with regard to her school really annoys me. The school sends a little slip to parents detailing the average absences and its target for the following year. My daughter is accounting for at least a quarter of a day for each pupil in the school. It is a caring school and it is doing it best for us, yet it is told to up its statistics for next year. It could up its statistics by removing my daughter, but it does not. There is a huge problem in secondary schools, however, and they are not set up to cope with it. Young people with ME cannot move around the school with their books. The problem is difficult and parents remove their children from school, either officially or unofficially and, if they are lucky, some of the children receive tuition. Obviously, Linda McLean's daughter, Heather, is not up to anything.

Linda McLean: I know a family in Paisley who, because of the attitude of the head teacher, are paying for their children to be privately educated. One twin has ME and the other twin was being bullied.

The Convener: Are children just dropping out of the system?

Linda McLean: There was a poor article in The Times Educational Supplement recently that had been written by a head teacher.

The Convener: Do education authorities in Scotland allow children with ME to drop out of the system?

Helen McDade: Yes. Parents can withdraw their children from school and educate them from home. Some people do that. However, a lot of children just stay at home and, if their parents do not say anything and no one is bothering them, nothing is done about tuition. Some children are not up to tuition, but the trouble is that, if their health improves after a few years and they have reached the age of 16, there is no requirement for tuition to be provided. Luckily, nowadays, young people can attend colleges so the position is not so bad. However, financial matters are involved. Should people not be helped to regain their position? It is a big problem.

Dorothy-Grace Elder: On education, Alan, are you fit enough to use computers and the internet?

Alan Stroud: Sometimes, but staring at a computer screen can be bad for ME sufferers. If I use the computer for too long, my brain goes numb and I cannot think. Those effects do not go well with undertaking such work.

Dorothy-Grace Elder: The symptoms sound as though you feel that you are under an anaesthetic most of the day. You just wilt.

Alan Stroud: Yes. It is like that.

The Convener: Thank you, Alan, for making an excellent contribution to the debate. Everyone in the committee has been impressed by it. We shall now discuss what to do with the petition. You are welcome to stay and listen.

Helen McDade: Convener, I wish to thank members of the committee for their reception. I say to Dorothy-Grace Elder that it is nice to receive genuine sympathy when people intend to follow it up. Thank you for listening to us.

The Convener: The suggested action is that we first ask the Scottish Executive for its comments on the progress of the working group that has been set up in England and that we also ask it to comment on the issues that our petitioners have raised. Winnie Ewing spoke about our summoning witnesses. We can formally request people to come before the committee to provide evidence; the only decision that must be made is whether we or the Health and Community Care Committee question them.

Dr Ewing: The matter covers more than health. It concerns education and benefits. The problems of sufferers are multifaceted.

The Convener: I accept that. Education plays a role in these matters but, as we know, the issue of benefits is reserved to Westminster. Perhaps we should initially seek the views of the minister before deciding how to dispose of the petition.

Dr Ewing: Which minister?

The Convener: Malcolm Chisholm. He is the minister responsible for such matters.

Rhoda Grant: I suggest that we find out whether the Health and Community Care Committee has plans to carry out an inquiry. The benefits issue would be solved if we could solve the health issue, because if people are properly diagnosed they receive the necessary benefits. Diagnosis is the nub of the argument because the services can be pulled in on the back of it. If the Health and Community Care Committee does not have the space to accommodate an inquiry, perhaps we should ask whether it would be happy for us to undertake one.

The Convener: That suggestion sounds sensible. Initially, we must seek the views of the Scottish Executive. While we are doing that, we can send a copy of the petition to the Health and Community Care Committee asking whether it will take the issue up or whether it prefers us to carry out the investigation. That committee has a heavy agenda, whereas we deal only with petitions.

Dr Ewing: We can see from the information that we received from the petitioners that they have come to us as a last resort. They have approached the Minister for Health and Community Care, the Scottish chief medical officer, all MSPs, health boards and health care trusts. It is not as though the petitioners have been sitting back hoping that we can wave a wand. They have been everywhere, which is why, if we adopt your proposal, convener, we should make it clear that we regard the matter as one of great urgency. We want to receive answers and if the Health and Community Care Committee is too busy in the foreseeable future—as it might be—we may have to start summoning witnesses ourselves.

The Convener: I have been advised that we do not have the power to conduct an inquiry. It is not within our remit.

Dr Ewing: We have the power to obtain evidence.

The Convener: We have the power to summon evidence in support of a petition, but we will not call that practice an inquiry.

Dr Ewing: Quite.

The Convener: We can ask witnesses to come forward to elucidate further the information that we have received from the petitioners. That initial work would probably help the Health and Community Care Committee. Rhoda Grant is right. If the Health and Community Care Committee can take on the matter, we will refer the petition directly to it. If it cannot, we can begin the initial work. I firmly take Winnie Ewing's point. The matter is urgent. It must be dealt with.

Phil Gallie: If, as suggested, we approach the Scottish Executive, Malcolm Chisholm would probably respond. I cannot envisage his having changed his mind much since he wrote to Iain Smith on 30 April. We must impress on him that we have read his letter and we must pick up on several points that it contained. The letter states:

"there are some clinicians who do not believe that ME exists."

Well, there must be acceptance somewhere that ME exists. Those clinicians must be told that it exists. Perhaps we can say to the Scottish Executive that, having considered the overall situation, we take issue with some of the points in Malcolm Chisholm's letter.

The Convener: That is a fair point. We can certainly do that. We can ask Malcolm Chisholm to update the Scottish Executive's position since he wrote to Iain Smith. We have listened to the testimony of the petitioners and we do not agree with many of the conclusions in the letter. Let us give him early warning that we may ask him to come before the committee and speak in support of his response. We will contact the Executive through Malcolm Chisholm. We will also copy the letter to the Health and Community Care Committee and ask whether it can conduct an inquiry or whether it requires us to carry out the initial work.

Dorothy-Grace Elder: There is little need to tell you this, convener, because both you and I are members of the Health and Community Care Committee, but for the information of other members I must say that the final meeting of the Health and Community Care Committee before the recess is tomorrow. I wonder whether we should raise the matter at that meeting. Obviously, we cannot study matters in detail, but we do not want a fortnight to go by before we make a start.

The Convener: As members of the Health and Community Care Committee, we can both raise the matter at tomorrow's meeting under the category of any other competent business and let the committee know that our clerk will be contacting it.

Dorothy-Grace Elder: The Health and Community Care Committee has too few members to undertake such an inquiry. This is the first opportunity that the Public Petitions Committee has had to act as the Bundestag would and undertake a public petitions investigation, as we learned about last week.

Rhoda Grant: Can we ensure that members of the Health and Community Care Committee have as much information as possible if the matter is to be raised under any other competent business?

The Convener: I shall take a copy of the papers with me. Is it agreed that initially we contact the Executive and that we find out what the Health and Community Care Committee intends to do with a view to our carrying out further investigations?

Members indicated agreement.


the above transcript can be found at

NB scroll down to Petition PE 398 ..................................................................................................

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