I am struggling to keep up with everything on PR at present, not least because of the debilitating impact of trying to read/think/write coherently about subjects which are deeply concerning and highly emotive.
There is an immense sense of frustration that we, the ME patient community, are repeatedly being misrepresented and mistreated, and possibly misdiagnosed.
It is blatantly obvious that our concerns about the BPS/MUS hypothesis models, the PACE trial and its associated studies and personnel, and their influence on the NICE guidelines and how our illness is being treated are justified, but not being listened to.
It's also blatantly obvious that those connected with these models/studies and associated services are being disingenuous and provocative in the way they are representing and responding to patients, especially when they are supposedly experienced and professionally trained in the care and/or study of sick and vulnerable patients.
This has resulted in a complete breakdown of trust in what they say, and the evidence and care they offer, since it risks detriment/relapse and compromising subsequent care for those who engage.
This statement alone should be enough to justify a revision of the current NICE guidelines, since patient trust is fundamental to the NHS and the provision of healthcare.
The BBC ran this story yesterday:
http://www.bbc.co.uk/news/health-40454684 about a mother (Rebecca) who raised concerns with Healthwatch about the care her son received for an unrelated medical issue, but which resulted in changes to the way a health service was provided and huge savings to NHS England.
This extract gives information on what may be a relevant avenue for this community to follow:
Healthwatch England has launched #ItStartsWithYou to highlight the difference patient feedback can make.
The campaign is encouraging members of the public to share their experiences of the NHS - good or bad - to help improve how things are done.
Imelda Redmond, national director of Healthwatch England, said the NHS was "increasingly keen to find out what people are feeding back".
"It can help the whole health and care sector understand what it is getting right and where things need to improve.
"I urge everyone to speak up and help us make the changes we all want to see," she said.
'Listen to patients'
Rebecca's feedback ultimately changed the way services were commissioned - not only in Staffordshire but across England. And in 2014, those processes were rolled out nationally.
"To have not acted would have been to accept defeat," says Rebecca. "I didn't want another family to go through what we did.
"Unless you listen to patients, you can't have a service that meets needs."