Charles Shepherd will be on Radio Scotland at 10-40 .
Health is devolved. I seriously hope that this is not emulated .
Having no services was exactly what saved my daughter from GET and the ability to avoid a referral to Bath.
I've posted on their Facebook page
ME Association. Your tireless advocacy has to be applauded , but what exactly has being in the tent achieved in this process here ? In reality NICE guideline compliant services are few and far between in England and Wales , GET has simply been rebranded, the rehab model is of very limited use ( refer to ME Action clinic survey which would be good to do again now for comparison to gauge change ) still causes harm and is now being expanded. Be careful what you wish for.
Having few services in Scotland saved many from GET, which was suspended by Scottish Parliament pre NICE changes.
The DHSC Delivery Plan fits neatly within the 10 year plan in dismantling specialist care through the NHS. .
Lack of consultant specialists is a serious issue , medical education a very serious issue and training materials are mediocre. These need priority to be able to change anything at scale.
The NICE guidelines should have initiated change , in reality they haven't and now prop up and perpetuate a system that has never worked for the majority
Essentially not much has changed.
Scotland has the opportunity to build something from scratch. It would be very foolish to start with this plan
I hope you don’t mind but I screenshotted your whole conversation on Facebook because it was a challenge and response to challenge that I feel reveals a lot about Dr Charles Shepherds thinking about the plan and what happens next - in my view there's an insanity position of keeping on keeping on, in the same vain as the past 27 years which have delivered so little. I’m starting the 27 year count from when the MEA first got involved with what was supposed to be the groundbreaking "end to neglect" government report published 2002, yet which began in 1998. Patients have basically been told since 1998 be patient and wait whilst they negotiate behind the scenes.
Dr Charles Shepherd says
"They are now very well aware of what is going wrong with both services and research. But it's a very big disappointment that they were unwilling to put in place the radical change that is required
Despite this I am not giving up and will continue to meet with all of these organisations. Just giving up is not the solution"
The thing is, they were made very well aware of the m.e predicament in great detail & the need for inline-with-other-illnesses research and services back in 2002, with many excellent recommendations.
New tactics should have been used from the time the MRC point blank refused to commission research as recommended in 2002 chief medical officers report (around 2006. It was also at this time that the APPG, when it was truly radical and agenda driven, was deciding that the MRC preferred method of action, a highlight notice , wasn't working, other mechanisms to drive research needed to be found & that an urgent injection of money to biomedical research, atleast at the level of that previously put into behavioural research, was due. Dr Ian Gibson mp of The APPG, around the same time (2006 2007 Gibson Report), had wanted to put an early day motion calling for massive m.e research funding and an HIV style research effort but apparently this or something else in it was too controversial, and it was shelved as the charities began the collaboration effort of the ME expert group . Since then, early day motions have mainly been used to congratulate the CMRC or MERUK rather than drive major change, the APPG has become much more conservative & charity - lead and the MRC have basically taken the **** with their attitude to collaboration.
I’m putting in this history because it’s a history of injustice and a history of failure and keeping on keeping on let’s get round the table for the next five years re. small measures is just not cutting it. People are dying waiting , people are growing old waiting, having spent 20 years trapped in the house, why isn’t this portrayed as a terrible injustice by our charities. Why aren’t they proposing anything stronger, than politely pointing out failures as disappointing but essentially saying they look forward to getting back in to discuss the small measures in this plan? Its rollover in action, no wonder the government thought they could get away with anything.
Governments delivery plan on ME ‘disappointing’ says charity
This newspaper article ended with a statement from the ME Association read: “The ME Association will continue to monitor the plan closely and remain actively engaged with colleagues in the Government’s Department of Health and Social Care (DHSC), and we thank the DHSC team for their commitment and dedication.
“We look forward to working constructively with the Government to push the plan forward as a priority and ensure that these actions support people living with ME/CFS.”
Edited to add some more details & opinion about the history and add the statement from the ME association