If you read my most recent post in the campaigns section, I discussed how the NHS and NICE have set up respective frameworks to ensure that patients are involved in their care and treatment.
This is especially important if you have a condition for which there is so far no evidence-based medication or treatment, for example, CFS/ME. Any care plan put together by an NHS service, be this a GP or chronic fatigue/pain clinic, needs to be tailored to the patient's lived experience, not foisted on the patient in a way that ignores their knowledge of their body and their limitations.
If someone feels that they have not been involved in the development of their treatment plan, there are steps they can take to report the service involved.
The Care Quality Commission (CQC) - the independent regulator of health and social care for England - stipulates in Regulation 9: Person-Centred Care that:
'Providers must work in partnership with the person, make any reasonable adjustments and provide support to help them understand and make informed decisions about their care and treatment options, including the extent to which they may wish to manage these options themselves.’
If you feel like your GP is in breach of the regulation, you can raise concerns about the service. Contact the CQC with full details of your complaint, along with a name and address of the care provider. This can be left anonymously. Alternatively, you can call 0300 0616161 to speak to our concerns team directly.'
All patients have the right to be involved in their own care and treatment at a meaningful level. In the absence of robust involvement guidelines for services related to the care of people with energy-limiting chronic illnesses, including those which provide a premise for the meaningful involvement of patients in service development (I am working on this!) patients need to be aware of how they can hold their NHS service to account.