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Published 23rd October 2024

Glimmer of hope – but actions needed

SUDEP Action CEO Sammy Ashby on the Government's new 10-year plan for change.

Government plans for change are ambitious, but not without challenges

On October 22, I attended a reception held by the Secretary of State for Health and Social Care, Wes Streeting, off the back of an announcement of plans to reform the NHS and create a new 10-year plan for change.

SUDEP Action had no real access to the previous Secretary of State for Health for a decade. Having received many stock response letters from this department under the last Government, the evening was a welcome, though cautiously optimistic event. In a room full of the good and the great from across health and social care, NHS England and the voluntary sector, the Secretary of State made a clear, yet realistic statement about his plans to get the NHS ‘fit for purpose’.

It focused on three key areas needing to shift:

1) Moving more care from hospitals to communities.

2) Making better use of technology in health and care.

3) Preventing sickness, not just treating it.

His plan is ambitious and not without challenges. With epilepsy services creaking under extensive waiting lists, poor funding & staffing levels, and increasing restrictions on access to vital care and potentially life-saving medication – it is easy, and perhaps sensible to take his hopeful tone with a very large dose of salt. Yet the speech provided a glimmer of hope, that maybe this time we could see the start of the urgent change we need to stop preventable epilepsy deaths happening and save lives. It’s a huge challenge and unlikely to be fully realised under this Government, but the intention to make things better is there.

We’ve submitted our views on this via their ‘ideas for change’ platform. While we hope this will be seen by the Department of Health and Social Care, it also gives us the chance to raise public awareness of epilepsy, its risks, SUDEP and the devastating consequences of issues not prioritised by the Government.

Please have a read of our statement and show your support for it. You can also submit your own experiences too.

We’ll also be sharing a more detailed response in other ways too.

Speaking directly to us, the event’s attendees, Wes Streeting said: “I don’t see stakeholders to be managed, I see partners to be involved with”.

I hope we can take him at his word, and that both he and his team will finally open their doors, invite SUDEP Action to share our community’s experiences, and do the right thing by prioritising neurological conditions like epilepsy. Conditions where there is so much potential to save and improve lives, as well as reduce the burden on NHS services. We are ready and waiting to work with them – they just need to engage.

Let’s hope this time the feeling is mutual and not just a nice sound bite for their latest press release.

For more information on the Department of Health and Social Care’s plans for the NHS, visit: Change NHS

Best wishes,

Sammy Ashby

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