And that will require all of us, @thereforme.bsky.social 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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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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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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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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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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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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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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First of all the positives.

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

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

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First of all our POV from @thereforme.bsky.social👇

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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