Short Discussion of CFS/ME in Young People (Wales)

On May 10th an important debate was held in the Welsh Assembly (Parliament for Wales), before the director and PA from the Association of Young People with ME (AYME), and several families. What follows is the transcript from this important short debate, indicating the support that is growing across the UK for children with M.

Lorraine Barrett: I have been involved with a family in my constituency where the young teenage daughter suffers from ME. That young teenager is Tiffany, and she has taken the brave step of coming here today with her mother to listen to the debate. That has taken a superhuman effort on her part, as she is often unable to leave her bedroom let alone her house. Also here today is Jo, another young ME sufferer. She is here with her family and other families with young ME sufferers who, unfortunately, are not well enough to be with us today. Thank you all for making the effort to come here.

This week is ME awareness week, and I could not believe my luck when my name was drawn in the ballot for the short debate. I knew then that I had to use this opportunity to highlight the misery caused by this often misunderstood illness.

I thank Wendy Holloway and Jill Moss of the Association of Youth with ME, known as AYME. I wanted to pronounce it as 'amy', rather than 'aim', but they said that the boys in the association would not accept that. Esther Rantzen is the president of AYME and I will refer to the association's work later. Several Assembly Members attended a presentation by AYME during the lunch hour, along with parents and young ME sufferers. It was informative and relevant leaflets are available for Assembly Members.

I do not feel that it is appropriate to go into the quite complex medical side of ME today. I will use this debate to highlight the effects of the illness and the difficulties that are faced by young ME sufferers and their families. The proper name for MEthis is where my nurse's training may come in usefulis myalgic encephalomyelitis. It is derived from Greek: myalgic meaning muscle and encephalo meaning brain. It is also described as chronic fatigue syndrome and was originally flippantly and cruelly referred to as yuppie flu.

It is only in recent years that ME has been recognised as a serious illness. Young sufferers receive a double whammy. As teenagers, they have to cope with all the pressures that beset healthy young people, let alone those who are ill. They are going through the normal growing up processes that we all went through, such as hormonal changes, difficulties with relationships, including parents, as well as having to deal with social pressures from school and exams. Then they are hit by this cruel illness, causing symptoms such as fatigue, sore throat, joint pain, concentration loss, lack of sleep and poor memory. Some young people have described their symptoms as 'my legs ache continuously', 'my words come out all wrong and I forget what I am saying in the middle of a sentence'. Some say that they cannot concentrate or watch television for more than ten minutes. Any noise is painful and bright lights hurt their eyes. Headaches can sometimes go on for days. In young people, these symptoms can lead to feelings of social isolation, as they simply cannot join in the things that their friends do. They often become depressed, as I am sure that I would.

At this time of their lives, losing contact with friends and dropping out of their social world can be devastating and can lead to terrible feelings of isolation and insecurity. Therefore, they not only have to cope with feeling ill, they also often lose their friends and suffer educationally because they are not well enough to go to school or college.

In the past, children and young people have always had difficulty in getting people to listen to their problems and concerns. The north Wales child abuse inquiry proved that. I hope that things are turning around now, particularly with the Assembly's commitment to appointing a children's commissioner for Wales. We must develop a different attitude towards young people. We should listen to them when they are well, but we should listen twice as hard when they are ill.

The problem with ME is that the understanding and treatment of the illness appears to be patchy throughout health authorities, not only in Wales but throughout the UK. A recent report called 'Speaking Up', www.ayme.org.uk written by Dr. Stan Tucker and Chris Tatum of the Open University and is informative. It was funded by the National Lottery Charities Board and compiled by asking young ME sufferers to fill in a questionnaire. Some were also interviewed, including several parents to gain an insight into how this illness affects the whole family. I hope that Dr. Tucker and Chris Tatum do not mind, but I can do no better than use some of the information gathered in their report to highlight the difficulties experienced by young ME sufferers.

According to the report, many youngsters experience negativity when they first see their doctor. I am sure that that is not true of the two doctors that we have in the Assembly. I do not want to criticise the medical profession, but it seems that many youngsters have come up against ignorance of the illness among their doctors and nurses. However, the report also lists positive experiences, with youngsters saying thing like, 'even though my GP did not know anything about ME, she read up on it and listens to me, which helps'. Some youngsters say that they found their child psychologist helpful. However, others report that they had been sent to a psychiatrist and one was even asked whether he heard voices.

There also seems to be a huge variation in the treatment offered to these youngsters. Some ME clinics advocate an aggressive exercise programme which tries to push the youngsters to do more physical activities. It seems to me, from the examples and information I have come across, that young ME sufferers should only do what they feel they can do, because they will become more exhausted if they push themselves too hard and end up feeling worse than when they started.

Young people with ME face two hurdles. One is having to deal with the illness and the other is having to deal with the educational problems that result from their illness. Again, provision is patchy throughout the country. There are examples of some local education authorities not understanding why a pupil cannot attend school, sometimes for a year or even longer. Some parents chose to educate their children at home or are provided with home tutors, some of whom are helpful, but there are some who do not appreciate or cannot cope with the physical and emotional demands of their young pupils. I know of one case where the education authority has virtually forgotten a young ME sufferer, with no contact since the parent decided to teach the child at home herself. I appreciate that there are huge demands on schools, teachers and local education authorities but these young people are at a crucial time in their lives and they could lose out on their education for months and years, some of them never managing to catch up. We must do all we can in the Assembly to ensure that all young ME sufferers in Wales obtain the best education they can, which is suited to their ability, depending on the severity of their illness.

I pay tribute to the work done by AYME, the Association of Youth with ME, www.ayme.org.uk which is a lifeline to so many young people. AYME is a UKwide charity dedicated to supporting young people with ME. It runs entirely on voluntary donations and produces a free magazine called Cheers, which keeps its young members in touch with each other and also provides medical, psychological and educational advice and information. I am wearing their cheerful badge, which shows what they are about, today. I hope this short debate will be the first step to raising public awareness of this cruel illness and that together, through the Assembly's health and social services and education departments and committees, we can improve the health and well being of so many young people in Wales who suffer from ME. I agreed before the debate to allow Kirsty Williams, David Melding and Dr Dai Lloyd a minute or two each.

Kirsty Williams: Thank you, Lorraine, for bringing this subject before us today and for your conscientious work in organisms the presentation this afternoon which my colleague Jenny Randerson attended. It is hard for us to imagine the difficulties faced by any sufferer of ME but the difficulties faced by young sufferers of ME are increased because of the nature of the disease as Lorraine described it, suffering not only problems within the health system but also problems within the education service. I would like to raise two points that are of particular concern to action for ME. First, patients are often misdiagnosed by medical professionals or have great difficulty in expressing their problems and getting the relevant treatment. There are a range of treatments available for ME sufferers and I have been aware of cases where they have been pushed down a particular route although they would have liked to pursue other options available for them. Second, there is the lack of awareness of ME within minority ethnic communities. I would be interested to hear from Jane what progress is being made following a LiberalDemocrat amendment passed by the Assembly on 25 January that noted the omissions from Assembly health and strategy documents of culturally appropriate health care. What can the Assembly do, not only to raise awareness of ME generally, but in particular to raise awareness within minority ethnic communities? I pay tribute to Lorraine for bringing this important topic to our attention.

David Melding: I am glad that the random ballot could come up with the pleasing result of allowing Lorraine to win during ME week and raise this important subject. I am disappointed that I could not attend the lunchtime function, I had to attend to other duties relating to the Committee that I chair.

Lorraine's exposition was powerful. It is difficult when a diagnosis is complicated, particularly when it relates to a condition that has a range of effects. As medicine advances we become much better at identifying these complicated conditions and that must continue. However, as ever in medicine, the situation with children is particularly demanding. This goes right across the range. It can be the case with drug research and all the treatments and interventions that we offerthey tend to come from the adult end of the market and are then brought in for children as well, without detailed research sometimes. This can be a concern. The other particular matters that aggravate the condition for children are the ones that were described, particularly education and the whole aspect of going through adolescence, which is itself a complicated time, often making the diagnosis more difficult too. The points about education and the way that they link into health and access to health services have to be taken up by the Health and Social Services Committee and the Pre16 Education Committee.

David Lloyd: I also thank Lorraine Barrett for raising this subject during ME awareness raising week. As I said at the lunchtime meetingI will not elaborate too much on the pointswe need to raise awareness of this disease. We need more information and far more research work, because currently, on the medical side, we have no tests that can prove whether or not a person is suffering from ME. We also need effective treatments, as we do not have any at present. A great deal more attention needs to be paid to this complaint and far more research is needed. That is the importance of having an awareness raising week like this, and the importance of AYME's campaign is raising awareness in order to promote research in this area.

The Secretary for Health and Social Services (Jane Hutt): Thank you Lorraine. I recognise that ME is a distressing, debilitating and disabling condition, affecting people of all ages. It poses a great challenge to health and social care, but also to the wider policy areas of education. It, in fact, affects all aspects of people's lives. Today, we are looking in particular at children and young people, at all aspects of their lives and life opportunities and those of their families and carers. Sadly, despite a great deal of commitment from professionals, carers, families and voluntary organisations, there are major gaps in our knowledge and understanding of ME and its impact on people's lives. It is important, therefore, that the Assembly has the opportunity of debating this today. I will take back issues that have come out of the contributions to my Cabinet colleagues, where relevant, and also take note of them in respect of my own responsibilities.

ME affects many people and their families throughout the world, but because of the problems of definitionDr Dai Lloyd touched on thisit is hard to determine the actual number of sufferers. It is thought that perhaps two people in every 1000 may have the illness, with numbers peaking in the 20 to 40 age group, but there is probably under reporting of the illness in some social groups. We know that the condition is more prevalent among women and that it can affect children as young as five. More recently, we have become aware that ME is becoming increasingly more common among schoolage children, which is of great concern to us. These issues have also been brought to my attention in my constituency.

There is much debate on the causes of ME. I will not go into detail, as that was not the focus of our discussions today. However, it does indicate, as Dai Lloyd said, that we need more research to guide our health practitioners and policies. It is appropriate that Lorraine has raised this in ME awareness week. I thank Tiffany, Jo and all the others who have come here from many different constituencies to listen to this debate. Thank you for coming and sharing your experiences.

Much research is being carried out on ME. However, it is not enough, as has been indicated. The Government has provided considerable funding and has funded several research and development projects to inform its work on the development of health and social care policy. In Wales, the Wales Office for Research and Development has funded a pilot study for a narrative analysis of patient accounts of chronic fatigue syndrome. Like the Open University report that Lorraine described, that is about listening to children and young people's experiences. I will return to that point.

The difficulty in defining the cause of ME means that there is no single diagnostic test for the condition. That returns to Dai Lloyd's point. At present, diagnosis hinges largely on the elimination of other possible conditions through a series of tests. It follows that because the causes of ME are not fully understood yet, there is no agreed treatment. That leads to problems in how people receive care and attention.

What can we, and the NHS in particular, offer ME patients? The symptoms are numerous and vary from one person to another. Suffers usually have chronic fatigue and pain in common. The NHS provides several services to which sufferers from chronic fatigue syndrome and ME have access. Patients are seen within a wide range of hospital specialities and can discuss the options available with their GPs. However, it is also important that they get support, empathy and understanding from their GPs. That is most important in the care of people with ME. Lorraine helpfully revealed this in her discussion of the Open University study. We should learn from good practice based on such studies and from users, carers, and those who have this complex illness.

Kirsty pointed to the importance of culturally appropriate health care. Minority ethnic groups may feel even more excluded from an understanding of ME. I am glad that the Health and Social Services Committee influenced our guidance on health improvement programmes. We need to ensure that we reach ME in the implementation of those programmes by health authorities. The issue of how people can get the right kind of support from their GPs is critical to what happens next.

A working group was established by the Department of Health in 1998 to consider providing good practice guidance. That is being taken forward by the Chief Medical Officer for England. We need to ensure that we learn from that group in Wales. The working group comprises health service professionals, academics, patients, carers and representatives of voluntary groups. It is reviewing management and practice in the sector with the aim of producing best practice guidance for professionals, patients and carers to improve the quality of care and treatment. I understand that its work should be completed by summer 2001. However, that is too far away for those here today.

A subgroup of that working group is considering issues affecting children and young people. We also need to learn from that group. We are closely in touch with the work being carried out by the Department of Health. The issues we have heard about today occur throughout the United Kingdom and the working group's findings will be a useful resource that we can draw on to improve the quality of our understanding, support and care for people with this distressing and debilitating condition. Our aim must be to provide good and appropriate care for sufferers of ME, which is an often perplexing condition. We must ensure that our knowledge continues to grow and our provision continues to improve.

On the wider issues, it is important that we recognise the blight on young life. Lorraine, you eloquently described what it means. Social exclusion and isolation leads to lack of confidence and esteem. Young people lose out on longterm life opportunities in education and social contact. This goes back to David Melding's point about listening to children and young people about their needs. The Assembly has agreed that listening to children and young people has to be our priority. It is easy to say these things. However, taking on board what children and young people are saying is the test of whether we put it into practice. We must ensure that we in the Assembly know about any local education authorities or schools who are not helpful in terms of education. We must ensure that we note unsatisfactory responses that have been given to children, young people and their parents. Lorraine, you sit on the Pre16 Education Committee. I am sure that Rosemary Butler would be concerned to hear about this.

In conclusion, I thank Lorraine for drawing attention to the important work of the voluntary sector in this respect, which is leading the way and educating us. In the Assembly, we take that strongly on board. We consult with the voluntary sector and we want to learn from the voluntary sector as well as put money into the research and provision. In this instance, we are supporting people with ME, particularly children and young people.

The Presiding Officer: That is the end of the debate on an important subject. I thank Members for their contribution. That brings today's proceedings to an end. Thank you for your cooperation.