CFS/ME Paediatric Service RNHRD Bath

On the Royal National Hospital for Rheumatic Diseases website December 2010:

Chronic Fatigue Syndrome / ME Service for Children & Young People

About Chronic Fatigue Syndrome/ME (CFS/ME)

CFS/ME in children and young people is surprisingly common. Around 1 in 100 children have disabling fatigue that prevents them attending full time school and around 10% of these are unable to leave home as they feel so unwell. Despite this, there are very few teams in the UK who specialise in seeing children with CFS/ME, and even fewer who are able to see severely affected children in their home.

The fatigue children experience makes them feel very unwell. One of the most classical features is that their fatigue is made worse by activity (physical, cognitive, thinking or emotional). As well as fatigue, children complain about a whole range of other symptoms. The most common complaint in the children that we see is unrefreshing sleep, other common symptoms include:

•Headaches
•Joint aches and pains
•Muscle pains
•Sore throat and painful lymph nodes
•A lot of children feel very sick or have tummy aches
•Problems with touch being very painful
•Problems with light and noise
What do we do?

The CFS/ME service for Children & Young People at the RNHRD is led by the only the only full-time Consultant Paediatrician in CFS/ME, Dr Esther Crawley. Dr Crawley and her team see over 150 children with CFS/ME a year and provide a specialist service for the assessment, diagnosis and treatment for any child or young person who has CFS/ME and needs help.

We have particular expertise in helping and supporting children who are severely affected, or very complicated children who may have more then one problem. Dr Crawley and her team are also experienced in assessing and treating children of primary school age.

Services are provided both in and out of our region.

In our region: we offer assessment, courses and rehabilitation plans for children to help them in the management of their condition, and learn how to get better. These courses are provided as individual family-based sessions.

Out of our region: we offer assessment, and we help the young person set up a rehabilitation plan. We then support the child’s local team in providing rehabilitation. Assessment can either be as an outpatient, or as a domiciliary assessment for children who are severely affected.

If required we can admit children who are severely affected, either for further assessment or for rehabilitation programmes.

What if a child cannot get to the hospital?

If a child is too poorly to get to the hospital, home visits can be arranged. We believe that severely affected children with CFS/ME should be able to access all treatment at home. We will carry out a home visit, usually with a local team (for example a GP, social services, local pediatrician), and carry out a full assessment to work out what treatment is needed, and how it can be accessed.

As part of a series of programmes on Radio 4 looking at this condition Case Notes presenter Dr Mark Porter accompanied Dr Crawley in her clinic at the Min to find out more about CFS/ME, and meet some of the children that have been affected by this condition. You can listen again to the Case Notes programme on the BBC Radio 4 website please click here.

Who can be referred?

We are happy to see any child with CFS/ME who needs help getting better, from the age of 2 – 18yrs. They may have mild CFS/ME and need a little help, or have very severe CFS/ME and not be able to get out of bed.

We can accept referrals locally, regionally and nationally.

How are patients referred?

Hospital consultants, GPs, or case managers can refer patients. We can accept initial referrals and enquiries over the phone, but referrers are required to make a formal referral in writing.

For referral advice, or to make a referral, please contact Dr Esther Crawley at;

Specialist CFS/ME service Children & Young Adults, Royal National Hospital for Rheumatic Diseases NHS FT, Upper Borough Walls, Bath, BA1 1RL.

Or Telephone: 01225 473425.

For further information about the service, please contact the Team Administrator, Heather Hill, on 01225 473425, or email heather.hill@rnhrd.nhs.uk

Links

•Action for ME
•Action for children and young people with ME
•Association of Young People with ME
•CFS/ME Helpline
Patient information

The team have produced a series of informaiton leaflets on managing CFS/ME in children and young people.

•Activity, rest, and sleep diary information
•Activity, rest, and sleep diary
•Amitriptyline
•CBT
•CFS/ME service
•Diet
•Energy management
•Exercises for severely affected
•Managing feelings and emotions
•Relaxation
•Sleep
•Solving problems
•Thinking traps
•Thoughts and feelings diary
•Understanding feelings

Improvements to Care
If you have any suggestions for improvements, or any comments which you wish to convey, please let us know.  Alternatively contact the Patient Advice and Liaison Service.

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