National Voices

It’s high time we got over it.

Pretending it doesn’t go on is foolish.

Suspecting the worst every time they come near to one another is energy-sapping.

No one is trying to deny history. But we are in danger of denying others a future if we continue to stand in their way.

I mean, of course, charities and pharmaceutical companies working together.

This is one of those issues that provokes the strongest of reactions from people.  I completely understand why but a dogmatic rejection of the idea seems profoundly wrong.  We have to find ways to enable these sectors to build bridges and work together in ways that the public can trust and feel confident in.  Their joint-working will not only lead to better medicines but also better behaviour by companies and charities.

Today National Voices, a membership organisation of charities working for a stronger patient voice in health and social care, and the Association of the British Pharmaceutical Industry (ABPI), have published a new guide to support charities and companies to forge collaborations in a transparent and effective way.

It sets out four principles on which these partnerships should be based: clarity of purpose; integrity; transparency and independence.  It also goes one step further than work by organisations such as the Association of Medical Research Charities (AMRC) in providing practical advice and support that will help charity and pharma staff think through the practicalities and governance of making such partnerships work.  In my experience it is often fuzziness and fumbling over the latter that causes most problems to staff but also in how things are handled in the public domain.

The guidance comes with an exceptionally strong provenance in terms of its methodology and who was on the Steering Group.  Not least the Group’s Chair, Harry Cayton, who is Chief Executive of the Professional Standards Authority and who says in a guest blog on the ABPI website today:

‘Previous guidance and direction does exist in this area, but there is nothing which covers the full range of issues, addresses charities and industry together, or fully promotes mutual understanding. We feel this is a valuable contribution to an issue that should ultimately lead to genuine benefits for patients. It is now up to companies and charities entering into collaborations to ensure that these outcomes are delivered.’

I commend it to you all.

 

So, there’s been a lot of activity around the NHS Constitution this week.

The group reviewing this document, led by Dr Steve Field, held a twitter discussion one lunchtime and you can read the extracts of this on the Department of Health website here.  Then, yesterday, Jeremy Taylor from National Voices and a member of the review group wrote a rather good blog about the challenges of arriving at a Constitution that is both based on rights and values and has teeth .

This is all a very sensible bit of sounding out of people’s views ahead of the full public consultation on the Constitution towards the end of this year.

One of the immediate issues as noted both by the tweeters and Jeremy is the document’s lack of visibility.  So, in answer to my own question posed in today’s blog headline, while you of course can’t write the whole document in 140 characters it would be a noble aspiration and one fit for our ‘social media’ orientated culture to try and sum up it’s key pledge to citizens in 140 characters.  The statement then might be a footnote to many documents and communications received by patients, with it gradually seeping into society’s psyche.

I seem to remember that in the days of ‘Clause 4,’ the Labour Party did the very same thing by putting the wording of this on the back of membership cards.  To great effect given the numbers of people who were able to recite it.  Those were the days he says almost as if it is a confessional.  Anyway, I am going to have a go at my 140 characters version over the weekend.

I’ve also been pondering what has made the US Constitution such a successful document – and the one that springs to mind immediately when we think of constitutional matters – over many hundreds of years.  There is something about its clarity of language, its vivid nature, the fact that it is concise,  its ability to enshrine checks and balances between institutions but also between the individual and these organs of power, and the way it future proofs itself by building in an acceptance that not only do things change and providing mechanims for dealing with this.  Plus, finally, you can’t consider its resonance through time without also dwelling on the notable characters behind its compilation.  They were about as far removed from the pen of the modern policy-maker as you can be without the whole thing becoming fiction.

Perhaps that’s the real challenge for the future NHS Constitution as Jeremy sort of implies – whether it becomes fact or fiction.

National Voices have published an excellent briefing on what the Health and Social Care Act (which received Royal Assent today) means for public involvement in care.’ And how we need to actively follow-up with the new NHS structures and bodies established by the legislation to ensure they keep to the letter of the law.  Read on.

Goodness me the nation’s health must be in peril if the Royal Colleges have kicked off their slippers and downed their pipes to emerge like Dad’s Army into the affray about the NHS reforms.  All seems to rest now on those of their number who reside in the Upper House.  How peculiarly English but ultimately unsatisfactory that it should come to this.

In the run up to today’s Second Reading debate of the Health and Social Care Bill, the hyperbole on both sides has been difficult if not impossible to avoid. Reading the papers feels more like a downhill ski slalom than an intellectual pursuit. 

And yet, while I wish I could buy into the Independent’s middle-ground opinion that what we have witnessed with the NHS reforms is simply a failure of communication, I do feel as though a lot more is at stake than this.  Heartwarmingly for me, it would seem a lot of people share this view on both sides of the debate.

It is with feelings akin to almost parental dismay that I recently learned that Julia Manning, Director of the right-leaning think-tank, 2020health.org, now blogs regularly for the Daily Mail.  The ‘right’ badly needs a radical if not impactful voice on science and I hope 2020health.org will earn its stripes in due course.  But Julia’s Daily Mail blog rather shot itself in the foot yesterday by saying – and I paraphrase – ‘we must not stop the Health and Social Care Bill because all the changes are underway anyway and everything will be in limbo.’  Her broadside simply served to underline how undemocratic the approach to the NHS reforms feels.  And her unfair swipe at Evan Harris lacked tabloid panache.

Alternatively you could dip into or gorge upon The Guardian’s running commentary on the whole saga, including their live text-feed thingy of what is being said by whom right now.  What would we do without the Guardian’s obsessive compulsive approach to these things?  I have come to the conclusion that its editorial staff grew up on and rather miss the days when news junkies used to watch ceefax page 102.  Occasionally, however there is a peach of an insight such as the one earlier today by Tony Blair’s former health adviser, Paul Corrigan.

If you wish to watch unadulterated coverage of the debate you can go to the parliamentlike.uk webcam here

Meanwhile the GPs just keep on answering those surveys including the latest one from the Royal College of General Practitioners in which only 4% of their number believe that the NHS changes will result in better patient care.  Not far away 84% of members of the Royal College of Psychiatrists want the Bill withdrawn – this after a group therapy session before which the level of despair was much greater.  But it is a wonder that our medical colleagues have any time for patients given the number or surveys they are filling out.

If you want some of the serious stuff then Becky’s PolicyPages are their usual reliable self with the gen on the research concerns.  But the penultimate word goes to National Voices (Ovarian Cancer Action has just become a member) with their five calls to Peers as the Bill heads for the vote.  National Voices’ briefing to the Lords highlights five further changes the patient lobby wants to see:

  • a definition of individual patient involvement
  • commissioners taking advice from expert patients
  • a statutory duty of candour
  • strengthening HealthWatch England
  • local HealthWatch organisations electing members of HealthWatch England.

I’m off to dinner in the Barry Room .

 

 

 

Science fear not.  Those of you disappointed that the EU summit on 4th Feb only got round to the subject of ‘innovation’ at a late hour and to little discussion should take heart from the fact that patients have been used to being at the end of a conference/meeting agenda etc for most of the last century…

But perhaps not today…No doubt you will have noticed that eight charities had a letter published in The Times in what the BBC called the opening of a new front against the NHS reforms as embodied in the Health and Social Care Bill.  They express concern that the reforms will dilute patient involvement in the NHS.  Six of the charities are AMRC members.  The other two include the increasingly impressive umbrella body, National Voices (who also publish a copy of the letter), and the mental health charity, Rethink.

Meanwhile the Secretary of State for Health, Andrew Lansley, has written an article in The Guardian claiming that growing numbers of people are backing his reforms.  Game on as they say.

It is interesting how, in little more than a decade, we have gone from ‘patient choice’ and ideas around a patient-led health service (which served its purpose well in confronting entrenched attitudes) to talk of a health system which is ‘clinician-led.’  Or, more accurately, GP-led.   My members and other charities are right to warn about the degree to which patients are at risk of being distanced from GPs and health services under the plans for GP consortia. 

But back to that EU story.  The EU Commissioner for research, Márie Geoghegan-Quinn, was at the Royal Society yesterday speaking about future plans for EU research including a ‘clean-break’ from the Framework programme and confirming that an EU Chief Scientist Appointment would be made this year.  The green paper setting all this out is published tomorrow although whether Nature’s call for greater clarity is heeded remains to be seen.