When it comes to effecting positive and meaningful change for those with conditions for which the medical community can do very little, patients' voices need to be at the centre of their treatment programme.
Not only have the NHS pledged a commitment to involving patients in their care and treatment, as well as service development, NICE have also produced a series of guidelines on enabling patients to actively participate in their care.
Both documents posit that patients are experts by their own experience, and any treatment plan ought to be the result of a collaborative effort on the part of the patient and their doctor/clinical team.
This is especially important for those with chronic illnesses for which doctors are unable to explain or prescribe. There isn't always parity of understanding, meaning members of clinical teams in charge of patients' care do not share the same views on the etiology and/or treatment of a condition. To use CFS/ME as an example, there is currently a chasmic divide between those who want to see more research into the biomedical causes of the illness (as backed by the UK's two leading CFS/ME charities, The ME Association and Action for ME), and those who subscribe to the view that CFS/ME can be managed through cognitive behavioural therapy and graded exercise therapy. This is in spite of reports by many affected by CFS/ME that exercise can make their symptoms much worse, an example that demonstrates a clear need for patients' concerns to be respected and accommodated by the medical community.
What is currently needed is a series of involvement guidelines pertaining to the care and treatment of those with conditions such as fibromyalgia, CFS/ME, Lyme disease, hypermobility Ehlers-Danlos syndrome, to name but a few, in order to ensure not only that patients' voices be put at the heart of their treatment plan, but that patients get involved in the development of services, a key part of which would be holding services to account.