Is Healthwatch England, Barking up the wrong tree?

Call me simple-minded but it never bodes well for an organisation in my view, if WORD persists in underlining your name in red. I should know.

Nor does it bode well if your strategy doesn’t fit on one side of A4. If people can’t print it out they won’t read it. In my opinion.

But that’s just me. And that was really more of an aside.

Last week Healthwatch England published their first annual report as the nation’s consumer champion in health and social care.

Good for them.

I want Healthwatch England (HE) and their members to be successful and I think they are doing a difficult job in trying circumstances. Late to the party through no fault of their own. Surrounded by instability. It must feel like being the winch man dropped from an Air Sea Rescue helicopter into stormy seas.

Their annual report is an important document. They have obviously done a lot of thinking and groundwork ahead of it. This was an opportunity to up their visibility and they took it.

But I am not totally convinced by everything HE have broken the surface with. I am not sure the evidence presented supports the chosen mission, nor of the clarity of that mission.

Healthwatch England have proposed a push around nine consumer rights. They want people to find their voice in claiming those rights locally. But do we need new rights? We already have rights under the NHS Constitution. We have difficulty enough in embedding and making them visible in practice. Let alone any others. So this could get very confusing. Whether they can bring these two things together as they signal in the report remains to be seen.

I am also a little sceptical about what these rights say. Or rather what they don’t say. Rights are quite naturally articulated in terms of the status quo. So, often they do a good job of reflecting the current context, not the future. But we don’t want the status quo. That these rights align with key issues such as quality or improvement is not clear to me. What will the world look like from the health consumer’s point of view in a decade’s time?

Well, you have a chance to respond to HE’s consultation and I implore you to do so.

Small point – but there is little if no mention of research. Which is surprising given the new duties on local NHS organisations to promote and advance research. However, it explains why HE have been so elusive to me. I hope they correct this omission – fast! Please call.

I know some people have protested about the use of the word ‘consumer.’ I have less of a problem with it. But I do have a problem with the weakness of the link being made between involving people and the resulting improvement in service that would surely happen if we do that. Shouting ever louder usually ends up in little more than hoarse voices and throat infections. In fact, we have lots of consumer champions if we are honest. But very few consumer-led commissioning or delivery organisations. That’s the issue. If they make a difference here it would be great.

To all intents and purposes Healthwatch England is a membership organisation. Its influence will depend on how well it works with its network of members – local Healthwatch – to make changes that matter to people. It mustn’t get too ahead of them nor fall too far behind in identifying what these changes should be.

When I ran AMRC our membership was not too dissimilar to a church congregation. There were those charities who sang heartily in the choir for us. Others sat in the front pews, asking challenging questions but unwavering in their faith. Behind them were those who had been told they had a faith. And at the back were the quiet ones troubled for all sorts of reasons.

So, rights probably matter less at this point than development of their congregation and ensuring that all ‘consumers’ have a robust champion where they live. Judging by the level of engagement I have seen and heard about locally, that’s going to be tough.

For reasons that really don’t matter, I had cause to visit the Healthwatch Barking and Dagenham website at the weekend. I think it’s making a good fist of getting itself up and running from what I can see.

But it’s future health and that of its inhabitants, will depend as much on Healthwatch England Barking up the right trees as on what it can achieve on its own.

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.

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week.  Not that I’m a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below).  To think I used to spend three weeks every autumn to attend the party conferences.  It’s like regaining a bit of my life again.

But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2′ website (this is the review looking at information governance in the NHS including use of patient data for research purposes).  Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work.  Look under the Southern Informatics listing on this page.

I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS.  I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients.  I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter.  Let me worry about that one.

I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline).  The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all.  It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.

The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate.  Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week.  It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’  Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute.  I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.

Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website.  Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs.  Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.

This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials.  It is being developed by DeNDRoN and will be developed shortly.  This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s.  The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.

Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places.  Reminds me I must buy Ben Goldacre’s new book to read on my travels.  And this from the US Federal Drugs Administration today seemed relevant.

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.

 

Given my post yesterday I am delighted to congratulate Tees, Esk and Wear Valleys NHS Foundation Trust on winning the Health Service Journal’s (HSJ) first ever research culture award last night. The full list of winners and highly commendeds is as follows:

Winner:

Tees, Esk and Wear Valleys NHS Foundation Trust

Highly Commended:

Portsmouth Hospitals NHS Trust

United Lincolnshire Hospitals NHS Trust

And here is a rather lovely bit from the NIHR website.

Let them be exemplars to others!