Tuesday 1 September 2015

Medical Support for the House-bound

Last week I was reminded that Trafford Healthwatch are running a survey:

Healthwatch Trafford have today launched a survey to look at how people with ME /CFS experience health services in the area.

[undated, from April 2015]

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 Lupus‬Fibromyalgia‬Arthritis‬, etc.

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