Thread by @KarenLHargrave

The Final Delivery Plan for ME/CFS has been released today.

The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online.

A short 🧵with some thoughts…

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First of all our POV from @ThereForME_UK 👇

People with ME have been waiting for the Final Delivery Plan for more than three years. This has been a very long time coming.

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@ThereForME_UK First of all the positives.

In essence, the plan is a government recognition of how #PwME are being failed.

In the foreword @AshleyDalton_MP recognises patient safety concerns & preventable deaths. This is something that can be used to hold the government to account.

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@ThereForME_UK @AshleyDalton_MP It’s not perfect but the plan has a pretty decent diagnosis of the main challenges people with ME face.

It recognises we need:

✅ More research
✅ Better NHS services
✅ Ramped up education & training

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@ThereForME_UK @AshleyDalton_MP The main issue we see is that the plan doesn’t go anywhere near far enough in putting forward solutions.

In many ways this was inevitable with no additional funding on the table (#FundThePlan). These are structural challenges needing transformative solutions & investment.

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@ThereForME_UK @AshleyDalton_MP To give one example: the plan discusses “exploring” commissioning an NHS service for very severe ME. Despite Dalton’s commitment to make preventable deaths from ME “never events” there is no concrete commitment to actually do so.

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@ThereForME_UK @AshleyDalton_MP The plan talks about ramping up research funding. Yet the plan’s flagship NIHR initiative on repurposed meds, while a positive step, is limited to £200k grants.

While the plan says researchers can apply for existing funds, this has never resulted in much historically.

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@ThereForME_UK @AshleyDalton_MP On education & training - ultimately we are talking about the need to reeducate the NHS workforce. This is huge.

Yet the plan’s main initiative is an optional e-learning. Far more robust approaches have been seen on conditions EG autism, but this takes investment.

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@ThereForME_UK @AshleyDalton_MP So, plenty of disappointment.

Ever the optimist, I’m not ruling out potential to make more progress. But that will require DHSC & ministers to approach the next stage of this work with a level of prioritisation and, ultimately, investment we aren’t currently seeing.

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@ThereForME_UK @AshleyDalton_MP And that will require all of us, @ThereForME_UK included, to step up our game making the case for change.

This is not about a DHSC process. It’s about real lives, people like my husband, who deserve a future & to feel that their lives matter. We won’t give up that easy 💪

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