“We doubt this vulnerability is what was intended in the drafting of the Plan. We know people with ME/cfs have had cross party political support for decades. We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will be resolved without a court hearing being necessary. People living with ME, and the NHS staff trying their best to deliver safe clinical care without clear, succinct, safe clinical guidance to follow, deserve nothing less.“
As a long timer, this to me looks an extremely optimistic and even naive take. Referring to the decision to omit severe ME from the plan entirely & put the development of very severe care - whether that’s full care or access to nutrition support only - as something that needs more time & i think depending on political will/ money, as “a snag” when in my view it’s part of a consistent drive to continue to largely manage & frame m.e as a fatigue disorder, on the cheap without medical input or the support comparable neurological conditions get. Edited to add All that requires money. And the core message from the DHSC plan was they don’t want to put any money into that.
The context is important and the fact that even in recent history, nhs England did nothing to review m.e services or implement marginal improvements via NICE 21, & all the defensive replies to the coroners report revealing the establishment mindset, don’t paint them in a pretty or well meaning light.
As a long timer, this to me looks an extremely optimistic and even naive take. Referring to the decision to omit severe ME from the plan entirely & put the development of very severe care - whether that’s full care or access to nutrition support only - as something that needs more time & i think depending on political will/ money, as “a snag” when in my view it’s part of a consistent drive to continue to largely manage & frame m.e as a fatigue disorder, on the cheap without medical input or the support comparable neurological conditions get. Edited to add All that requires money. And the core message from the DHSC plan was they don’t want to put any money into that.
The context is important and the fact that even in recent history, nhs England did nothing to review m.e services or implement marginal improvements via NICE 21, & all the defensive replies to the coroners report revealing the establishment mindset, don’t paint them in a pretty or well meaning light.
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