A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly

So here’s my unsubstantiated personal theory.

It is that one of the root causes of the problems besetting today’s NHS’ is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years.  From almost the day that the NHS was born in the arms of a post-war nation, we have shown a lack of courage towards involving the public appropriately in the maturation of the service.  In this vacuum, the evolution of the health service has been driven as much by unchecked romanticism (think of the Olympics ceremony) as anything else.  Ideology has stymied the pragmatism that was needed to meet successive challenges.  These challenges only get more daunting and difficult the more we delay.  In my view, we can only resolve them by reforming its corporate governance so that patients and the public are involved in the running of the NHS from top to bottom.

With that in mind, that’s why I tweeted yesterday in support of the idea going before the NHS Commissioning Board to explore the idea of a citizen and community assembly (NHS Civil Society Assembly).  You can find out more details about the proposal being considered at the Board’s meeting on Thursday 28th February in Manchester (you can register to attend) here (see Item 4).  It’s a start.

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The Guardian has posted its round-up of the on-line chat that I and others took part in regarding patient feedback in the NHS.  The conversation ranged far and wide with little focus but it was interesting nonetheless. The ‘Francis report’ was published the day after and I seem to recall someone somewhere tweeting that patient feedback would be the source of trust in the NHS.  Seemed a faintly overblown and risky claim to make.  Ensuring that people can give their feedback and know that their concerns will be taken up is critical.  But it will take more than this to restore people’s faith in the service.

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Rare Disease Day is coming up later this week on 28th February (see Rare Disease UK website), so it seems worth pointing to several recent news items that have focused on efforts to bring about greater flexibility in how we do clinical trials.  All with the intent of getting new treatments to people faster.  First, this from the USA where the Food and Drug Administration’s (FDA) is talking about approving so-called  ‘Breakthrough’ therapies after only a limited number of research studies.

Closer to home you may have picked up on the Empower: Access to Medicines campaign including e-petition to the UK Government which, as of today, has 711 signatures.  Les Halpin, who has MND and is one of the founder’s of ‘Empower’ was interviewed on the ‘Today’ programme in a curious piece which seemed to mash-up several issues: the right of people to choose to receive treatment with untried medicines (see also Lord Saatchi’s Bill in the House of Lords right now); how regulation is slowing up medicines development and; the problems with the EU Clinical Trials Directive.  The discussion is important but so is clarity of purpose, motivation not to mention the solution.

Talking of regulation, if you check out the Health Research Authority (HRA) website and the presentations from its recent ‘stakeholder forum’  you’ll see there is an update on its public involvement activities including the Sciencewise project looking at public attitudes to health research regulation.  I imagine we will see the results in late Spring and they should be fascinating.   Plaudits to the HRA for taking up the challenge to improve the evidence on what the public think in this area.

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And in other news, the NIHR School for Social Care Research has published the scoping review of ‘User Controlled Research’ by Peter Beresford and Suzy Croft.  A must read.  And finally, this looks wonderful, a new charity devoted to improving mental health research through the involvement of service users – ‘The McPin Foundation.’  Hopefully I will have cause to write at greater length about them in the near future.

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