The NHS Commissioning Board Draft Mandate and patients in health research

The Shard went up (officially).  And the NHS Commissioning Board Draft Mandate came down from on high.  All on the same day.  Add the odd torrential downpour with its associated misery and these could be Biblical times.

I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent phone signal when such momentous events occur.  On this occasion I was taking part in the Third NIHR Experimental Medicine Research Training Camp; a three-day residential meeting where over 60 NIHR doctoral students were learning the art of science communication.  By their own confession they were taken out of their comfort zone.  No more so than when they had to test their ideas in front of our excellent lay advisory panel.  It forced them to think differently, to re-interpret their knowledge and expertise from a public and patient viewpoint.  But the outcome in terms of their plans and ideas was superlative.

So what about the NHS Commissioning Board Draft Mandate from the point of view of public and patient involvement in research?

Unsurprisingly most attention has been drawn to page 26 of the Mandate headed’Promoting growth, research and innovation’ which looks at the role of the Board in promoting research by:

  • Working with research funders
  • Improving adoption and spread of new technologies
  • supporting patient participation in research

Objective 17 and associated Annex B set out more precisely how this will be achieved and measured.  The commitment to measure increasing patient recruitment is important.  It is my view that this data should not only be about participation rates (already available through the clinical research networks), but also the extent to which patients are being offered the opportunity to take part in research  (a possible role for the Care Quality Commission (CQC) through its annual patient survey).  Together, these measures would tell us much about the extent to which the NHS is realising its duties in terms of research and patient choice.

For what it is worth, my own view is that the real game-changer in the Mandate when it comes to participation, falls within the ‘Choice Framework’ set out in Annex D.  For this begins to set – for the first time and in some detail – the expectation that patients should be offered the opportunity to take part in relelvant and appropriate research as part of their care and treatment.  It gives them and us license to challenge the system to make that choice a reality.  As will the reviewed and renewed NHS Constitution when it comes out in draft form this autumn.  Or I hope it will anyway!

The less satisfying aspect of the Mandate is the weakness of its statements on public involvement – as National Voices has already pointed out.    In fact, it is very poor indeed.  I already have a growing sense of unease over the new corporacy which may be creeping over some Clinical Commissioning Groups (CCGs) as they tackle the issue of public involvement.  A number of CCGs are clearly in the search for those with specialist expertise and skills, as opposed to finding those who can reflect and articulate the patient voice.  Others, on the other hand, are doing their best to get it right.  But it is difficult to get a cohesive picture of what is happening because the signals are intermittent and often broken-up.

So I would say this.  It is important that we respond to the consultation on the Mandate to support and strengthen its statements about patient choice and research.  But equally important is to hear people’s experiences about what is happening with public involvement locally, good and bad.  For we must make the case that, in order to meet its objectives, the NHS Commissioning Board has to ensure a better foundation for public involvement than it has thus far.

Only if we provide space for patients to challenge the system will we see improvements in the way that care and treatment is provided and people’s choices honoured.

Government consults on Healthwatch membership

The Government last week launched a public consultation seeking views on the membership of Healthwatch England.

Healthwatch England will be the ‘consumers champion’ under the NHS reforms. It will be what they call a ‘statutory committee’ of the Care Quality Commission (CQC) and is expected to be up and running by the autumn. Many, including National Voices, have argued that it should be an independent body.

In the consultation,the Department of Health asks for views on how large the Healthwatch committee should be, how people should be appointed to it(including whether they should be elected), and what sort of experience they should have. It says that they should have a background in active patient and public involvement.

The document is quite helpful in describing where Healthwatch fits into the overall scheme of things. There will be local Healthwatches as well. And a key issue will be ensuring that these local bodies form a strong network. Also, that they have a strong link to the England committee. We have singularly failed to achieve this aim with previous incarnations of patient and public involvement forums, beginning with Community Health Councils in the 80/90s or their successors including ‘LINKS.’

As an aside, you might wish to read Angela Rippon’s interview in the Sunday Times today. She is now a Vice-Chair of the Patients Association (paywall).

I’ve got a pile of irony to do tonight – from Scottish independence to NHS reform

On my train journey from Edinburgh this morning, I listened to a BBC Radio Scotland phone-in about the implications of Scottish independence.  The intricacies of a possible de-coupling from the UK are fascinating – from the economy to people’s pensions, to the NHS.

I’ve yet to read an article written specifically about the pros and cons from a medical research or science point of view.  But this is a good overview of the economic issues as recently appeared in the Financial Times.  In terms of the day-to-day, though, I wonder just how much more of a difference formal ‘independence’ will make in some areas.

For the irony is that, for a good few years, the forums I am involved in have become well-versed in encompassing the devolved administrations and their points of view as if they are wholly independent.  The discussion and negotiations are not always easy.  Sometimes – well, quite often actually – colleagues look jealously upon the enlighted approach they are taking.  But the upshot is that broad agreement is reached sooner or later and the various partners left to their own devices to how it is implemented.  So the real issue is not about de-coupling.  Rather it is how to ensure these different approaches remain linked to everyone’s benefit.

While away, I have intermittently followed the latest blows being traded over NHS reform. Mike Birtwhistle from MHP has blogged insightfully about the various politics behind the stance, or should I say different stances, of the medical professions.

How ironic it is that the Royal College of Physicians – who brought the BMA to heel to create the NHS in 1944 – is now being pressued by the BMA to ‘save the NHS.’  Or so the BMA would have us believe.  The relationship between the two has never been an easy one.  My sense is that the survival instincts of the Colleges – which are even greater than that of our own political parties – will come out on top.  They will want to stay at the negotiating table come what may.

Meanwhile, the irony is that life with the NHS reforms goes on.  Chris Ham, Chief Executive at the King’s Fund, wrote a blog last week which was much quoted for only one aspect, his comments about what the aforementioned medical professions and their latest salvos.

His other main observation was that, while the politics rev up again, the reforms continue apace in other ways, regardless of and without little need of legislation. And many, including Royal Colleges, position themselves rightly and astutely to ensure the reforms benefit their respective constituency – note this from the Royal College of Paediatrics and Child Health (RCPCH) about the new Children’s Forum. 

In other sectors – medical research for instance – the debate during the parliamentary stages has been highly relevant, important and constructive.  Much has been gained and much is still on the table.  Its cross-party support can only be helpful as we reach the final stages of the legislative process.  The potential impact on how the NHS supports research in the future is significant.  So, for some, I am sure, it would be ironic if this gain were to fall along with the Bill.  At the very least it would supposedly leave things in a bit of a pickle.  But I doubt very much that will be the outcome, one way or the other.

If you wish to get up to speed with the latter debate ahead of the Report Stage of the Bill in the House of Lords have a look at the ever-comprehensive analysis on Becky’s Policy Pages.

 

Manning and crowd weigh in on NHS reforms at the eleventh hour

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 .

 

 

 

NHS reforms to face a tough round of Peer review this autumn

We are a nation that no longer knows when to put its rubbish bins out.

So I reflected, as I dragged our two overflowing wheelie bins back to their usual place. To be fair to Bromley Council, it’s not that they fail to pick-up our rubbish; just that no one can quite predict what sort of rubbish they are going to collect in any given week.

I won’t bore you with the details. Suffice to say that some months ago they changed the system of waste collection here – successfully ‘piloted’ with local residents I should add – so that various items would be picked-up on alternate weeks. Well, for the life of me, I and my neighbours have got it wrong at least 40% of the time. I wouldn’t mind that much but after hours toiling over separating tetra packs from the New Scientist it does get a bit irritating to see the bin men and women dump it all together in the back of a dustcart. As my mother would say – and she is usually right about most things: ‘it all goes down one way.’ But I do wonder if I am part of some sort of rather wicked observational study.

Such episodes in life do however serve as useful metaphors for larger trends at work. In this case, perhaps, it is the passing of what was once certain, fixed, reliable. Now I just sound like John Major don’t I?

Anyhow, enter stage centre-right, the NHS. September is upon us after another crummy August and our politicos have quickly rejoined battle over the health service reforms. The Sunday Times front page from yesterday suggesting that overseas companies are being primed to run hospitals (or should that be the other way round) left me unsettled to say the least.  Notwithstanding the so-called ‘Listening Exercise’ prior to the summer, it really does feel as if the tectonic plates are shifting beneath the NHS and fast.

The BBC Online has a good overview of where the battle lines have been draw if you wish to look deeper and I wish that I had been able to attend this evening’s Stempra briefing and discussion on the Bill – perhaps someone will post a comment giving us a sense of what happened. 

But I was struck by the passage in the BBC piece about the anticipated forensic scrutiny of the legislation when it gets to the House of Lords.  Heavens knows it needs it.  When I was a little closer to these things than I am now it was well-known that Peers were getting together regularly to examine and prise apart the Bill in preparation for its stages there.

This is the thing.  If you are into your pure politics then I suspect you will be attracted by the likely rough and tumble during the party conference season and in the House of Commons come October.  If, however, you are looking to throw your weight behind the forces that might ensure the reforms are changed for the better then I encourage you to assist our Peers in every way you can with good evidence and good briefing.

Otherwise, it will not be that the NHS fails to treat people in the future, rather that none of us will be able to predict which patients it will treat in any given week in any given part of the country.

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PS: Apologies that the links are to ‘home pages’ but I can’t seem to use anything other than the WordPress recommended links on this computer.