Discussion of CFS/ME in Welsh National
Assembly - 5/10
Young People and CFS/ME
-------------------------------
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 ME--this is where my nurse's training may come
in useful--is 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', written by Dr Stan
Tucker of the Open University and Chris Tatum, a young ME sufferer, 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,
which is a lifeline to so many young people. AYME is a UK-wide charity
dedicated to supporting young people with ME. It runs entirely on voluntary
donations and produces a free newsletter 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 organising 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 Liberal-Democrat 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 offer--they 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 Pre-16 Education Committee.
(...)
David Lloyd: I also thank Lorraine Barrett for raising this subject during
ME awareness-raising week. As I said at the lunchtime meeting--I will not
elaborate too much on the points--we 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 definition--Dr Dai Lloyd touched on this--it 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 school-age
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 sub-group 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
long-term 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 Pre-16 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 co-operation.
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(c) 2000 National Assembly for Wales
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