Please repost the following
http://healthwatchtrafford.co.uk/about-us/our-reports/
Response below from main contributor and local ME patient.
"I am extremely grateful for Healthwatch Trafford agreeing to do a survey, and for it to include whole of England (now UK). I am also grateful for the ongoing support from organisations such as The Patient's Association, Thyroid UK, 25% ME Group, Dr Speight (Tymes Trust), Invest in ME Research and the ME Association.
I was very impressed to see Healthwatch Trafford recently set up a similar survey for Fibromyalgia, which is a condition that often overlaps ME (more controversially called CFS).
There have of course been some problems with the ME (CFS) survey: the time delay of two years, the use of two psychologists for a Neurological condition, and the fact that it may be used for academic research by these psychologists; the title 'Tired of Explaining' ME is not tiredness, but debilitating fatigue with other symptoms e.g. PEM, frequent prolonged infections (Canadian Consensus); only forwarding information upon request to other local HW and CCGs.
However, from the start both myself and Healthwatch have been surrounded by an overwhelming amount of problems and politics which I did not expect. This has taken over my life for the past two years, having an impact on my own health and support.
This includes people trying to speak on behalf of others, the under representation of severe patients and children, selected 'reps' (also who I feel may not fit the criteria of ME or typical demographic e.g. gender and age), secret meetings, lack of information and transparency, copycatting and general disrespect for the individual rights of patients under the NHS Constitution.
It has also highlighted general problems with the post-Francis Report system for all patients (not just those with ME). These include the process of giving feedback and it being taken seriously; The regulation and accountability of the NHS at every level; Complaints being ignored and/or denied; Being able to speak up politely with evidence, without the risk of being viewed and treated negatively and feeling 'blacklisted'; Local Government; and the regulation of the third sector, amongst other problems.
I have sent my concerns and evidence to the media and government in the hope that this will one day change as patient's lives continue to be at risk, including children. Lessons have not been fully learnt from Mid-Staffordshire and subsequent events.
That said, I believe that patients with ME (and other conditions) should keep giving polite feedback and evidence direct to watchdogs and similar organisations if we want positive change to happen. We are a very large group of people with a valuable voice. Thank you to everyone who participated."
Karen Morris
ME CFS Manchester
www.memanchester.wordpress.com
www.facebook.com/groups/memanchester