The National Institute for Health & Clinical Excellence (NICE) provides guidance to support healthcare professionals and others to make sure that the care provided is of the best possible quality and offers the best value for money, based on the best available evidence.
How NICE guidelines affect you
NICE published guidelines for diagnosing and managing ME/CFS in September 2007. This is the official document that should be followed by anyone officially involved in your treatment and support, and was drawn up by a group of healthcare professionals, patients and patient organisations (including AYME). At AYME, we think that the guidelines are just that – guidelines, and so they won't suit everyone all the time. It's also important to know that in some areas there hasn't been enough research done with children and young people, and that at the moment there is not enough detail on care and management for the most severely affected people.
But the good news is that the guidelines give everyone an idea of what people with ME/CFS can expect from their local health provider, and includes the following key points:
- A child or young person with ME/CFS-type symptoms should be referred to a paediatrician to exclude other conditions within 6 weeks of first going to see the doctor. A diagnosis should be made after other possible conditions have been ruled out, and the symptoms have persisted for 3 months. Advice on managing symptoms should not be delayed until a diagnosis is made.
- Making contact with the family is particularly important for children and young people, and people with severe ME/CFS.
- Healthcare professionals responsible for caring for you should have the right skills and knowledge of ME/CFS.
- It's recommended that you have a ‘named health care professional' to the patient – this is especially important if you are severely affected.
- Moderately to severely affected patients may need to use wheelchairs and be provided with blue disabled parking badges.
- Because managing severe ME/CFS is hard and complicated, healthcare professionals should know that specialist expertise is needed to plan and give care to for severely affected patients. For example, they may need to use community services. The document also sets a realistic picture of what activities and long term goals should be like for someone with severe ME/CFS (such as ‘sitting up in bed or brushing hair' as a long-term goal).
The guidelines also include some clear statements on what should not be happening. For example, your doctor should not tell you to go to the gym or take lots of unsupervised exercise, as this may worsen your symptoms. The guidelines also say that you have the right to refuse or stop any part of your care plan without affecting your future care. This is important to remember if you feel under pressure to take part in any programmes that you feel strongly against.
Finally, guidelines say that ‘transitional care' from paediatric to adult care should be planned and managed as you get older, and that you should be supported to return to education when you are ready and fit enough.
NICE guidelines on support and information
This summary is taken from the NICE guidelines quick reference guide:
- Establish a supportive and collaborative relationship with the person with CFS/ME and their carers. This is particularly important for children and young people, and for people with severe CFS/ME.
- Assign a named healthcare professional to be responsible for co-ordinating the person's care.
- Provide accurate information at all stages, from when a diagnosis is first being considered.
- Tailor information to the person's circumstances, including the stage and duration of the condition, symptoms, and personal and social factors.
- Make information available in a variety of formats if appropriate (printed copy, electronic and audio).
Information should cover:
- possible causes, nature and course of CFS/ME
- returning to work or education
- local and national self-help and support groups for people with CFS/ME and their carers
- the NHS Expert Patients Programme
The full guideline document (317 pages) is available at http://www.nice.org.uk/CG53 where you'll also find a patient version, a quick reference guide and a web format version.
LATEST: Patient Choice
You may find it useful to read this letter, written by Earl Howe from the Department of Health, which explains what can be done to get patients the help they need, such as through the health ombudsman or local commissioning group.
Therapies NICE recommends
NICE says that that you should be offered cognitive behavioural therapy (CBT) and graded exercise therapy (GET) – and that the choice is yours whether or not to try them. The most important thing is that whoever is providing you with treatment knows about and is trained in ME/CFS.
NICE also says that people with ME/CFS have reported pacing to be helpful in self-managing their condition. "However, healthcare professionals should advise people with ME/CFS that, at present, there is insufficient research evidence on the benefits or harm of pacing".
At AYME, we recommend Activity Management, which is a programme the combines elements of CBT, GET and pacing, and is tailored to meet your particular needs. You will be involved in planning your programme, working in partnership with your specialist therapist.
Problems with access to care and treatment?
AYME recommends that anyone unable to access the care and treatment recommended by NICE makes a complaint though the NHS complaints process. Complaints are picked up by the Healthcare Commission and affect Strategic Health Authorities star ratings.
Please inform AYME if you are not satisfied and any of the guidelines are not being followed (firstname.lastname@example.org).