Support for Parents of Children with

 Chronic Fatigue Syndrome


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Access to education for children and young people with medical needs

The following has been written  by the Department for Education and Skills (DfES) for Local Authorities, schools, hospital and home teaching services, hospital and health trust managers, chief executives, primary care trusts and social service departments. The text can be accessed in full via :

Home teaching
1.14 Home teaching is education on a one-to-one basis in the child’s home, perhaps with occasional attendance at a teaching centre.  

Long-term problems
3.8 With some illness there may be problems with the unpredictable and changing pattern of the illness. Review meetings should be as integral to the identification and intervention arrangements as the planning and discharge meetings.

3.9 The Government has undertaken a review of management and practice in the field of CFS/ME with the aim of providing best practice guidance for professionals, patients, and carers to improve the quality of care and treatment for those with CFS/ME. Some young people will be too severely affected by their illness to participate in any form of education. 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 but are encouraged to do so in a way which is likely to be sustainable.

Provision at home
3.10 For absences that are expected to last for 15 working days or less and are not part of a pattern of a recurring illness, arrangements should be made in liaison with the child’s parents to provide the child with homework as soon as they become able to cope with it. Liaison between the school and parents usually allows work and materials such as books and reference documents to be sent home. However, where the absence relates to a chronic condition, LEAs should ensure that the child is provided with education as soon as they are able to benefit from it.

3.11 LEA should ensure that a pupil is not at home without access to teaching for more than 15 working days. That period should include any period that the pupil has spent in hospital. Where a pupil has been in hospital for a longer period and has received teaching whilst in hospital, LEAs should be aware of the disrupted pattern of education for that pupil and the need for the maximum possible continuity, and will wish to make some teaching available as soon as possible.

87% had had to struggle for recognition of their needs      

76% were not satisfied with the education provision

81% had moved school to get recognition of their needs

63% had left state education

65% had paid for private tuition or distance learning

62% had felt threatened or bullied by attitudes from other children

84% had felt threatened or bullied by attitudes from professionals

72% did not give a vote of confidence to state education for children with CFS/ME

A survey was carried out in just how much support  children with CFS/ME and their parents had had from their  school. The result was quite appalling:

One school’s attitude to CFS:

The Head of the Pastoral Care Team informed parents that Glandular Fever and Chronic Fatigue Syndrome was something that students fake, to get out of studying or doing homework.

When the Head Teacher was told this by a parent who thought it was an outrageous statement, the Head supported this by explaining: ‘It is commonplace for children to attempt to persuade their parents that they are not well enough to go to school, when in fact they are well enough, “I think I might have Glandular Fever,” is a line which might have more chance of success with some parents than the simple “I don’t feel well”.

Home tuition was mentioned as an off-hand remark by school only a couple of months before one student was supposed to sit her GCSE exams although she had been ill for 18 months.

When the parent complained, the Head Teacher supported the school’s decision by explaining: ‘If we had suggested it before it became the last resort, we would have laid ourselves open to the suggestion that we were trying to pass the problem on to another agency.’