Chronic fatigue syndrome or myalgic encephalomylopathy (CFS/ME) is relatively common in children, affecting at least 1% of teenagers. It is probably the largest cause of long-term absence from school. 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.
Why choose us?
Our CFS/ME service for children and young people is a national and local service led by one of the few consultant paediatricians specialising in CFS/ME in the country, Dr Esther Crawley. Dr Crawley and her team see over 300 children with CFS/ME a year and provide a specialist service for the assessment, diagnosis and treatment of 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 children whose case is complicated by more than one problem. The outlook for children with CFS/ME who access appropriate treatment is excellent, with most making a good or complete recovery. We therefore aim for recovery.
We believe that all clinical care should have an evidence base. We therefore only offer treatment that has been shown to work in trials. Dr Crawley runs a research team based in the University of Bristol which conducts research in to the casues and treatment of CFS/ME. This means that all the treatment offered by the clinical team is based on the most up-to-date reearch results.
We are currently running two research studies. If you are eligible, your clinician will discuss the study with you in full detail, you can find out more information here.
As part of a series of programmes on BBC 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 who have been affected by this condition. You can listen again to the Case Notes programme on the Radio 4 website (please click here).
What we offer
Services are provided both within and outside our region. Within our region we offer assessment and rehabilitation plans for children and young people to help them manage their condition, and learn how to get better. Out of our region we offer assessment, and we help the young person set up a rehabilitation plan. We support the child’s local team in providing rehabilitation. Individuals can either be assessed as outpatients or, if they are severely affected, at home.
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 paediatrician), and carry out a full assessment to work out what treatment is needed and how it can be accessed.
How can I be referred?
We are happy to see any child aged 2-18 with CFS/ME who needs help getting better. 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.
Hospital consultants, GPs or other health professionals can refer patients. We can accept initial referrals and enquiries over the phone, but referrers are required to make a formal referral via Choose and Book or in writing to:
Dr Esther Crawley, consultant paediatrician, specialist CFS/ME service children and young adults, RNHRD NHS FT, Upper Borough Walls, Bath, BA1 1RL
Children and young people need to have had CFS/ME for at least three months before a diagnosis can be made. Before a diagnosis is made, children and young people need to have had screening blood tests to rule out other causes of fatigue.
For further information about the service, please contact Heather Hill, team administrator tel. 01225 473425 email firstname.lastname@example.org
Relocation of Bath based service to the Royal United Hospital, Bath
The service provided at the Mineral Hospital site is moving to the dedicated Children's Unit at the RUH's Combe Park site in July 2016. Find out more here