Guidance for Home Tutors

Being assigned to teach a young person with ME/CFS at home takes preparation. The pupil is suffering from an illness which requires full and proper understanding and he or she may have been ill for some considerable time without proper access to education.

Tutoring a young person with ME/CFS is very different from tutoring other pupils. Symptoms fluctuate during the day and affect individuals differently. So when an LEA assigns a home tutor to a family, he or she will need to understand how the illness and its symptoms are impacting on daily life before making any decisions about a teaching programme.

What is ME/CFS?

What are the symptoms?

• Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people feel. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evidence when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity.
• Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. Skin sensations such as skin crawling and pins and needles may be felt.
• Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called ‘brain fog’.
• Other symptoms: Body temperature disturbance, dizziness, vertigo, postural hypotension, sensitivity to light and noise. Possibility of sleep disturbance, nausea, loss of appetite, gastrointestinal disturbance, mood swings, panic and anxiety, acquired sensitivity to food, medication, alcohol and chemicals. A minority of patients may experience severe symptoms such as blackouts, temporary partial paralysis, loss of speech, loss of swallowing function. These symptoms are severely disabling.

There is no diagnostic test for ME/CFS, meaning diagnosis can be a rather drawn-out affair. Numerous blood tests and a detailed medical history rule out conditions with similar symptoms. Diagnosis is then considered by matching the patient’s symptoms with a set of standard ME/CFS criteria.

There is no known cure for ME/CFS, nor a magic pill to help reduce all the symptoms. Three management strategies have been shown to help patients manage the condition. Pacing is preferred by the majority of patients. This is an energy management strategy where patients are encouraged to achieve a balance between activity and rest to prevent them falling into a ‘boom and bust’ vicious circle of over-activity and relapse. Activity can be physical or mental (anything that requires concentration); rest should be quiet relaxation with no television, radio, computer or telephone. Cognitive behaviour therapy is a psychological technique that aims to empower patients to identify, understand and modify their belief systems to maximise their own functioning. Graded exercise therapy is a structured and supervised exercise management programme that aims for progressive increases in aerobic activities such as walking or swimming. This is controversial because many patients and clinicians consider that patients are already functioning at maximum levels of activity. Some patients report that they have been harmed by an over-vigorous graded exercise programme. For more detailed information on these treatments please refer to our Medical section.

Education law and ME/CFS
Home tutors need to understand the legal framework that supports access to education for young people in England with ME/CFS who are of compulsory school age but who are too ill to attend school full-time. Each Local Education Authority (LEA) and school has a duty by law to abide by it.

Section 19(1) Education Act 1996 says:
“Each local education authority shall make arrangements for the provision of suitable education at school or otherwise than at school for those children of compulsory school age who, by reason of illness, exclusion from school or otherwise, may not for any period receive suitable education unless such arrangements are made for them.”
In other words, an LEA is obliged by law to find other ways of educating young people who are too unfit to attend full-time school. This may be tuition at home, in a hospital school, part-time at school or in a special centre. The arrangements and education must be suitable.

Section 19(6) defines ‘suitable education’:
“In this section ‘suitable education’ in relation to a child or young person, means efficient education suitable to age, ability and aptitude and to any special educational needs he may have.”
‘Special educational needs’ is defined in Section 312(2b) of the Education Act 1996 as: “has a disability which either prevents or hinders him from making use of educational facilities of a kind generally provided for children of his age in schools within the area of the local education authority.” In other words, the arrangements must have regard for the student’s age and the level educationally he/she has reached but must also take into account his/her medical difficulties. ME/CFS classes as a disability.

Access to Education for children and young people with medical needs (Ref 0732/2001)
To support Section 19, the Department for Education and Skills has published guidelines that give advice and guidance to schools and LEAs on how to carry out their duties based on the above legislation. These guidelines are available from the DCSF on 0870 000 2288 or here on the Teachernet website. Each LEA and school should also have its own written policy freely available to the public.

PLEASE NOTE: Page 8 of the guidelines lists the LEAs responsibilities to children with medical needs. The first point says LEAs should ensure that “pupils are not at home without access to education for more than 15 working days.”

East Sussex County Council ex parte Tandy
This case was brought when East Sussex LEA tried to cut the home tuition service because they could no longer afford it. The judgement links in with Section 19 above. Five Law Lords unanimously agreed:

• LEAs cannot avoid their duty under the law.
• LEAs have a duty to make alternative arrangements for sick children who cannot attend school full-time.
• LEAs have a duty to provide a suitable education.
• Money cannot be taken into account when deciding what constitutes a ‘suitable education’.
• LEAs have a duty to make suitable arrangements for each sick child individually and not as a group (no blanket policies)
• If there are two ways to provide a ‘suitable education’, then and only then can the cheaper option be taken (but both options must be ‘suitable’).

The legal duty under Section 19 ends once the young person leaves school in year 11, but the LEA still has a ‘power’ to continue education provision should it so wish. Learning and Skills Council (LSC) funding guidelines state that an LEA should continue to provide tuition if a student is in the middle of a GCSE course. There are also arrangements through the LSC for funding for young people with ME/CFS post-16.

Special Educational Needs and Disability Act 2001
New duties to the Disability Discrimination Act 1995 were introduced to prevent discrimination against disabled people in their access to education. The new Act defines disability as “a physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to perform normal day-to-day activities". There are two core duties:

• not to treat disabled pupils less favourably
• to take reasonable steps to avoid putting disabled pupils at a substantial disadvantage. This is known as the reasonable adjustments duty.

Home visits
By the time a young person with ME/CFS is assigned a home tutor, families have often had difficulty in getting a diagnosis and educational provision. They may have experienced disbelief from medical and educational professionals and often feel alienated and in need of constructive support. Families need to feel they can voice their concerns safely, be listened to and believed. Whilst a home tutor is with a young person to provide access to education under Section 19 of the Education Act 1996, it is hard to separate the role of providing constructive support and vital information. It is also hard to separate responsibility to the young person with ME/CFS and their family. The two are intrinsically tied in together. That is the nature of the caring role families are thrown into.

Initial visits
Before tuition can take place, the impact of the illness on the young person’s life needs to be understood thoroughly. To prepare for the initial visit, a home tutor would benefit from reading the AYME website article ‘What is ME?’. It also helps to understand that exhaustion is a major difficulty for students with ME/CFS. Patients exhaust easily and with little warning. Over-exhaustion can lead to relapses and exacerbation of the symptoms, potentially putting the sufferer back in bed for days or weeks. Families and tutors must learn to pace the energy of the child, keeping all activities to manageable levels well within the individual energy parameters and preventing a ‘boom and bust’ pattern. For many ME/CFS patients just sitting up and talking is enough to exhaust them and care needs to be taken that an initial visit is carried out with this in mind. Families will be able to help with information and the visit should be conducted with them present.

Additionally, all young people with ME/CFS have a time of the day when their symptoms are easier and their energy returns to some degree or another. Frequently this is late afternoon. Guidance should be taken from the family as to the length of visit the young person is going to be able to cope with and which time of the day would be most suitable.

Teaching young people with ME/CFS is different from other students because of the restrictions imposed by the symptoms. It may be that a home tutor arrives from the LEA with definite instructions on provision, but the initial visit/s will show whether or not the proposed arrangements are the right ones (or suitable under the law) and whether or not the family and young person feel they are realistic. Sometimes, families agree to arrangements at a meeting and have second thoughts later.

Before making any decisions about a teaching programme, the following things need to be discussed sensitively and without judgement with the family and young person. They may well take more than one visit to complete:

• What symptoms does the young person suffer from?
• How does exhaustion impact on their life?
• At what time of the day does the young person have better energy?
• Do they have sleep disturbance?
• How does sleep disturbance affect the day?
• Does the illness affect concentration, short term memory and create ‘brain fog’ which impacts on study?
• What impact does the illness have on the rest of the family?
• Is there any medical advice from the paediatrician that the tutor should be aware of?
• How do additional viruses, like a cold, affect the young person?

And to understand how a teaching programme can be planned:

• How long will the sessions be realistically? This will vary from day-to-day but a general time will need to be agreed. This could be anything from ten minutes to an hour. Sessions longer than this are not recommended.
• What time of the day is the tuition going to be most effective for better energy levels?
• If the young person is bed bound, is there a chair for the tutor?
• Should tuition be received whilst the young person lies on the sofa/day bed?
• How long can the young person sit up without exhaustion?
• Would they prefer to use a table?
• How is the young person going to indicate to the tutor when they are tiring and need to stop?
• Will it be necessary to have a break?
• How will the family contact the tutor if there is a need to cancel sessions?
• Is the young person well enough for gentle, planned outings perhaps in a wheelchair?
• Is the young person well enough for a short car ride perhaps to a library? Nausea and dizziness can be a problem with car travel.
• Is homework appropriate?
• Does the family have a computer that can be used during teaching sessions and is the student well enough to use it?

If GCSE exams feature in the teaching programme, realistic goals need to be set in terms of the number of subjects studied and home tutors need to be aware of examination concessions. Please see the article on examination concessions. Mock exams and SATs need to be avoided if they add stress and create difficulty.

Before the visit, the LEA will assign a certain number of hours home tutor provision to a child. These hours are owed to each sick child individually (no blanket policies) and money cannot be taken into account when deciding on a suitable education according to the House of Lords judgement for East Sussex County Council ex parte Tandy. The young person is owed a ’suitable education’ under Section 19 of the Education Act 1996 and under the Access to Education for children and young people with medical needs guidelines. The provision should take into account the child’s age, ability and aptitude but, most importantly, his/her disability and the impact the symptoms have on his/her life. Initial non-teaching visits will determine whether the tutor feels the provision is suitable under Section 19 of the law and as set out in the Access to Education guidelines. Any difficulty here (eg overlong sessions, too many sessions) needs to be worked out with the LEA. A tutor can also establish what type of programme will be most productive and how the tuition is to be successfully delivered. This will help create a supportive relationship with the young person and their family.

Teaching visits
The home tutor is now in a better position to decide on a teaching programme. One-to-one teaching is intense and a gentle initial programme is a better way to start whilst everybody finds their feet. Project work is always a good start as this follows an interest of the young person, gives a good source for conversation, establishes a rapport, gives the young person work that can be done quietly and gently between sessions (if appropriate) and gives an end product.

Despite all the planning, ME/CFS has fluctuating symptoms and some days the student will feel worse than others, which means that occasionally tuition will have to be cancelled. Flexibility is necessary throughout.

At the teaching session it should be remembered:

• Social chat is a healthy and necessary ingredient for isolated young people.
• The programme should remain flexible.
• Be sensitive to a change in symptoms and exhaustion levels.
• Keep calm and gentle.
• Fun and laughter is good therapy.
• Be supportive and sensitive.
• Keep in constant communication with the family to avoid any misunderstanding and argument.
• Don’t overstay the time agreed.
• Don’t encourage pushing on with work.
• Don’t overstretch or inflict stress on the student.

After a month or so it will become apparent whether the arrangements are working well or not. Under the law, arrangements have to be ‘suitable’ for the young person and need to be reviewed if this is not the case. It may be that arrangements are not suitable because the hours are too much or too little or there may be a change in the student’s condition which requires a change in provision. Home tutors can act as liaison between the family, the school and the LEA in helping decide how arrangements need to be changed to provide ‘suitable’ arrangements under Section 19 of the Education Act 1996 and in accordance with the guidelines Access to Education for children and young people with medical needs. LEAs should not change the arrangements if they are suitable, working well and if there is no change to the student’s condition. (See ‘Applying the Suitable Argument’).

Additional support
Once a supportive relationship is established with the young person and the family, home tutors can become vital liaison between the school and home and provide essential support at review meetings. The opinion of an educational professional who knows the young person and the family well is often an element missing from review meetings.

Young people who are too ill to attend school usually no longer feel a part of the school community. A teacher who visits from the school bringing messages from classmates and news from the school community should be encouraged by the home tutor. This too provides a vital link between the family and school when deciding what would be suitable educational provision at review meetings.

To combat isolation, the following have been used successfully by teachers from schools:

• With permission from the family, classmates are taught about ME/CFS (AYME has produced a DVD for use in school).
• A class book with messages and drawings circulates regularly from classmates to the young person at home and back again.
• All school letters are still sent home.
• Cards are sent on a birthday and at Christmas.
• Classmates are asked to visit. This needs to be achieved sensitively and arranged with the family as visits can be overtiring.
• Teachers stay in contact with supportive home visits.

Home tutors should also provide families with information for useful contacts (set out below) and on their legal rights as set out in the section ‘Education Law and ME/CFS’. This will provide the structure for the young person receiving access to education that is suitable to his/her condition.

• SENCO at the school
• Day-to-day contact at the school
• Exams Officer if appropriate
• Education Welfare Officer
• Medical contacts at the school
• LEA contact for home tuition
• Local Parent Partnership details

AYME supports families and young people with ME/CFS and membership is free. AYME also has regional contacts who form local support groups of other young people with ME/CFS, either via group newsletter, email or occasional meet-ups.

Association of Young People with M.E. (AYME) 08451 23 23 89

Additionally, there are other organisations which can support families:

DCSF public enquiries 0870 000 2288
Disability Rights Commission http://www.drc.org.uk 08457 622 633
Advisory Centre for Education http://www.ace-ed.org.uk 0808 800 5793
Children’s Legal Centre http://www.childrenslegalcentre.com 0845 345 4345
Independent Panel of Special Ed Advice http://www.ipsea.org.uk 0800 0184016
Disability Advice Centre (advice on benefits for the disabled) 0800 882200

Reintegration
Reintegration can only happen when a young person regains enough energy to cope with time away from the home. US paediatric ME/CFS specialist Dr David Bell suggests people apply the ‘Mall Test’ when considering reintegration; that if a child can tolerate three hours in a busy shopping mall, then they can deal with one hour in school. Reintegration may not happen for months or years and needs gentle and careful planning.

Anxiety would not be uncommon when facing what can be perceived as a big step. The home tutor plays a vital role in preparation for school visits, now that a trusting relationship is established. Careful planning would involve the young person, family, home tutor, school/unit staff and LEA and would be based on medical advice. Energy for getting washed and dressed, for the car journey, for meeting people and studying at a set time of the day should not be under-estimated.

Short, gentle visits accompanied by the home tutor either to the school library or to the unit would build confidence and allow the young person to express any concerns.

Further planning is discussed in ‘Advice for Teachers on Reintegration’.

Young people with ME/CFS experience many difficulties as a result of their illness and disruption to their education. With careful planning and realistic goals supported by informed educational and medical professionals and an improvement in symptoms, a slow and gentle return to normality will see these young people living fulfilled lives and becoming strong members of the wider community.

Article last edited on Wednesday 29th July 2009                          Printable Version