Information for the public
All healthcare professionals should treat you with respect, sensitivity and understanding. They should explain CFS/ME and the different managements and treatments for its symptoms simply and clearly.
Your treatment and care, and the information you are given about it, should take account of any religious or cultural needs you may have. It should also take into account any additional factors, such as physical or learning disabilities, sight or hearing problems, or difficulties with reading or speaking English. Your healthcare team should be able to arrange an interpreter or an advocate (someone who supports you in putting across your views) if needed.
People involved in your care
Your may see a number of different healthcare professionals, depending on your symptoms and circumstances. These may include:
your GP (family doctor) and nurses at your GP practice
specialist doctors working in a hospital
physiotherapists, clinical psychologists, nurses and occupational therapists with experience of caring for people with CFS/ME.
There should be one named healthcare professional who is responsible for coordinating your care.
If you have severe CFS/ME, you should be offered a summary of all discussions.
Your treatment and care should take into account your personal needs and preferences, and you have the right to be fully informed and to make decisions jointly with your healthcare team.
Your healthcare professional should:
recognise that your condition is real and how the symptoms are affecting you
give you information about CFS/ME, the treatments and care described in this information, and going back to work or education
give you information about self-help and support groups for you and your family or carers
take account of your wishes, your age, how severe your CFS/ME is, and any previous experience that is relevant to your current care.
You should be given information in a way you can understand and that is relevant to your circumstances, such as a leaflet or a tape to listen to.
The information should include details of the possible benefits and risks of particular treatments or therapies. You can ask any questions you want to and can always change your mind as your treatment progresses or your condition or circumstances change. You can choose to refuse, change or withdraw from a particular treatment at any time, without this affecting other aspects of your care or choices about your care in the future.
If you have severe CFS/ME, you should be offered a summary of every discussion so that you can refer to it afterwards.
If you agree, your family and carers should have the chance to be involved in decisions about your care. Involving your family is particularly important if you are a child, or if you have severe CFS/ME. Family and carers also have the right to the information and support they need in their roles as carers.
If people are unable to understand a particular issue or are not able to make decisions for themselves, healthcare professionals should follow the advice that the Department of Health has produced about this. You can find this at www.gov.uk/government/publications/reference-guide-to-consent-for-examination-or-treatment-second-edition/consent. Your healthcare professional should also follow the new Mental Capacity Act (www.justice.gov.uk/protecting-the-vulnerable/mental-capacity-act).
Questions for carers, family members or friends to ask
What is CFS/ME?
How will it affect the person with CFS/ME and our lives?
What can I/we do to help and support the person with CFS/ME?
Is there any additional support that I as a carer might benefit from or be entitled to?
A child or young person's right to make decisions about their care will depend on their age and their ability to fully understand the information and the risks and benefits of the care offered. If you are over 16, you may be able to give your own agreement to a treatment you are offered. If you are under 16 and fully understand the treatment, you may also be able to agree to it. But if you are too young to understand it fully, your parents or guardians may need to agree to your treatment.
The healthcare professional responsible for your care should make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME. It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.
Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home, or getting support and advice by telephone or email.