Last week I was reminded that Trafford Healthwatch are running a survey:
According to MeManchester:
For anyone in England with ME or CFS, even though it says Trafford.
Please complete this questionnaire, if you are able; for, the more responses, the more the likelihood that Healthwatch can and will take action.
I fought for two years, backed by my G.P. and my hospital consultant, to get a support package off Trafford PCT - who did everything they could to impede my success. As I understand it I was only the second person ever to succeed with them.
The now defunct Manchester community nursing ME/CFS support team (sorry - cannot recall their actual name) visited my home, as I was and am classed as "severe" under the NICE guidelines and by my hospital consultant. They helped me audit my energy usage and suggested actions I could do to help myself. For example, I still have a chair on the stairs landing so as to take a rest part way down, rather than trying to do in one go. I still have slogans mounted in my bedroom to remind me of various actions that due to dyscognition and memory issues I frequently forget.
My consultant runs specialist ME support clinics at the hospital I attend annually. Alas, due to the severity of my condition - I am for the most part housebound with occasional supported outings - I am unable to access those clinics. I am not in the "most severe" category of those on drips and so forth.
I do think more needs to be done for housebound sufferers, not just of Myalgic Encephalomyelitis but also Lupus, Fibromyalgia, Arthritis, etc.