Memorandum submitted by The Young ME Sufferers
YOUNG ME SUFFERERS
The Young ME Sufferers Trust works with Nisai
Education to provide a virtual classroom for Stage 3 pupils with
ME/CFS and free over-16 virtual education for students with ME/CFS
in conjunction with the Learning and Skills Council.
Full information about The Young ME Sufferers
Trust including an endorsement by the Prime Minister is at www.tymestrust.org
The Trust's "Tymes Trustcard" is a
pass card for children with ME in school, endorsed on its launch
by Education Minister Baroness Ashton and by the Secondary Heads
Association and supported by Lord Clement-Jones CBE and Earl Howe.
The Trust is the longest-running support organisation
for children and young people with ME and specialises in education.
It runs an Advice Line, a Professionals Referral Service for doctors,
teachers and others, and produces VISION, an informative magazine
in which children are encouraged to express their views. The Trust's
publications are available free of charge on its website www.tymestrust.org
WITH ME/CFS AND
1. MEalso known as Chronic Fatigue
Syndrome or ME/CFSis the biggest cause of Long Term Sickness
Absence from School, as first discovered by Dowsett and Colby
(1997 Journal of Chronic Fatigue Syndrome). This is the largest
study of ME ever undertaken. Dowsett and Colby studied a school
roll of 333,024 children and 27,327 staff. They also found clusters
of the illness.
2. There is now abundant research evidence
that this is an organic illness and not a psychological disorder,
yet many children with ME are still not being offered education
suitable for their needs, and to enable them to perform to their
ability in examinations. They suffer widespread discrimination
against their disability.
3. Children with ME fall into two categories.
They suffer from a chronic illness but they also have special
educational needs because of its effects upon both the body and
the brain. They often need part-time or home-based education,
curriculum modifications, and special arrangements for examinations
such as extra time, rest breaks and sitting the exam at home.
These assist children with ME to perform to their ability when
seeking qualifications and minimises the educational disadvantage
caused by the effects of the illness on the brain. The authors
of a paper revealing further objective evidence of cognitive dysfunction
recently said that sufferers "appear to have to exert greater
effort to process auditory information as effectively as demographically
similar healthy adults. Our findings provide objective evidence
for the subjective experience of cognitive difficulties in individuals
4. Section 19 of the Education Act 1996
requires Local Education Authorities to make suitable provision
for all children and young people who cannot attend school by
reason of illness. But there is a significant overlap between
medical and special educational needs in this illness and it is
often virtually impossible to separate the two. Schools have a
Duty of Care as well as a duty to provide suitable education for
children with special educational needs. In ME these two overlap,
since too much mental concentration can produce physical relapse
and physical relapse means that the child can no longer study.
School attendance or inappropriate educational demands are a key
cause of relapse; this results in further educational disadvantage.
5. Two years ago, a study by The Young ME
Sufferers Trust ("The Forgotten Children" 2003) found
that 87% of 126 young people it consulted had struggled for recognition
of their needs and 81% had had to change schools to gain such
recognition. Sadly, the Trust is still receiving similar reports.
6. Such is the concern amongst young people
and their families that this year, young members of the Trust,
through its study "Our Needs Our Lives" (April 2005)
have asked if new ME/CFS clinics being set up with NHS funding
will support the Tymes Trustcard, which is a school pass card
system set up and run by the Trust with the support of the Secondary
Heads Association. The card protects the needs of young people
with ME in school. However, we have no evidence as yet of this
7. The Young ME Sufferers Trust has also
set up a partnership with a private firm Nisai Education to provide
a Virtual Classroom for secondary age children unable to attend
school due to MEa scheme which I was pleased to launch
in 2004. They have secured 50 places for those over 16 to continue
receiving free education. More government and LEA support for
such virtual education schemes is needed, especially as it is
not home-based education that isolates these children, it is the
nature of their illness. The virtual classroom enables interaction
with other pupils whom they may later meet, as well as increased
educational achievement and support for recovery.
8. At the moment, evidence from families
strongly suggests that both the special educational needs and
the medical needs of children with ME are not being sufficiently
addressed by schools and Local Education Authorities despite many
government and professional publications.
8.1 In 2001, The Dept for Education and
Skills stated in its statutory guidance "Access to Education
for Children and Young People with Medical Needs" that "pupils
who are unable to attend school because of medical needs should
be able to access suitable and flexible education appropriate
to their needs".
8.2 In 2002, Chapter 5 of The Chief Medical
Officer's Working Group Report (Dept of Health) stated that: "nearly
all children who are severely affected and many who are moderately
affected will require the provision of home tuition and/or distance
learning." Jane Colby was a member of the Working Group on
8.3 In 2004, The Royal College of Paediatrics
and Child Health stated that "as a general rule reintegration
should be slow and cautious" and drew attention to the Dept
for Education and Skills recommendation that a resumption of education
in whatever form should be planned in a way which ensures that
children and young people do not feel under pressure to study.
It refers to the virtual classroom as a means of providing continuing
education for children and young people with ME.
8.4 Unfortunately, parental reports suggest
that these and other recommendations and statutory guidelines
are too often disregarded. Denigratory remarks have been made,
and continue to be made, together with suggestions that children
with ME do not have genuine special educational needs.
9. It appears that LEAs are unwilling to
make Statements of Special Educational Need for children with
ME. Recommendations under the Code of Practice are often inadequate.
The Trust has published the first ME/CFS guidelines for Educational
Psychologists (September 2005) but believes that teacher training
in the needs of pupils with ME is urgently needed. The Trust has
run such courses, after which teachers have felt much better equipped
for their task. A teacher who had attended one of the Trust's
courses won the first Thorntons Award for supporting her pupil.
10. Schools breach their Duty of Care if
they insist on school attendance or fail to make suitable provision
and thereby make the child worse. Discrimination issues arise
when special educational needs are not provided for and special
arrangements for examinations are not offered or the school refuses
to apply to the Examinations Board. Ofsted is expected to identify
a lack of suitable provision for these children but parents report
to The Young ME Sufferers Trust that in their view these deficits
are not being picked up in inspections.
10.1 The Trust holds on file a host of letters,
emails and completed questionnaires from parents describing unkind
and ignorant treatment at the hands of teachers and others in
the education profession. To quote from a parent who recently
contacted The Trust: "When I spoke to the head of the sixth
form on Friday afternoon she said there wouldn't be a problem
if she went to school! It staggers meI think that most
people cope by pretending that it can't really be a `proper' illness."
10.2 The entire paragraph from this parent's
letter reads: "We all have to put up with general disbelief
in the condition. It has been made very clear to me in recent
months from other parents behaviour round me that they think my
daughter is unbalanced, school phobic, exam phobic, neurotic and
suffers from panic attacks. The headmaster did admit to me recently
that the school had never had a student who over the years had
missed so much school. She was the only one in her year who did
not attend the prom organised by her year on Saturday evening.
They didn't bother to invite her in the first place, and she probably
was not well enough to be there, but it would have been good to
have been included. I know that this is considered by the other
children in her year as yet another example of her being odd and
not fitting in. One parent told me that no-one at school believes
that she is ill because sometimes she gets to go out and do interesting
things. We didn't receive the information from school about the
sixth form, because she had been left off the list, and when I
spoke to the head of the sixth form on Friday afternoon she said
there wouldn't be a problem if she went to school! It staggers
meI think that most people cope by pretending that it can't
really be a `proper' illness."
11. Lack of specialist knowledge, educational
techniques, suitable courses, facilities and examination arrangements
is still turning children who could potentially obtain qualifications
into failures with few or no qualifications to their name. What
is almost worse is that many believe it is their own fault.
12. The Trust is calling for urgent training
programmes for teachers to give them the understanding and skills
necessary to ensure that government statutory guidance is indeed
followed for these children, whose condition is unique in its
mixture of medical and special educational needs.