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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.

 

NHS research culture awards

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!

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.

Rising cancer rates and the NHS reforms…plus NIHR and ‘impact’

I suspect you have seen today’s news bulletins covering Macmillan Cancer Support’s report predicting a significant rise in the number of people who will get cancer. To quote the opening lines of their statement today:

Cancer rates are increasing at such a rate that research shows 42% of people who die in this country will have had a cancer diagnosis. And for most of them (64%), it is cancer which causes their death.

Macmillan calls for better services and support for those with cancer. Fergus Walsh on his BBC blog emphasises the need for people to take more personal responsibility for their health. Cancer Research UK has been quoted as also emphasising the prevention message saying that half of all cancers could be prevented by better diet, stopping smoking etc. They are all right of course. As is also the message that we need to continue to fund cancer research if we are to ultimately secure new and ever-better treatments.

Similar comments were made yesterday at the excellent All-Party Parliamentary Group on Cancer hearing about the impact on cancer of the NHS reforms. I am sure that some rule to do with Chatham Docks prevents me from directly reporting the comments by the panel – Peter Johnson from Cancer Research UK, Jennifer Dixon from Nuffield, Heather Nathan (patient) and Dr Steve Field (GP and Chair of the NHS Future Forum) – or audience. But hopefully their insights will be appropriately incorporated in the final report of the Group on Commissioning expected later this year.

For the moment then, just two thoughts of my own:

It is pretty evident that for many patients – and not just those with cancer – the opportunity to benefit from new treatments and trials is often dependent on their own strength, determination and gall. It should not be like this. There is still a gaping need for better information to be provided and for patients to be better supported by health professionals and others on their patient journey to remove the element of ‘chance’ in their care.

We need to overcome this notion that somehow research is outside the remit of service commissioning or commissioners. It has to be integrated with the decision-making that sits behind such activity. While the changes to the Health and Social Care Bill which will mean new duties on GPs etc with regard to promoting and using research are good news, how we ensure this happens in practice is the unanswered question as yet.

In the closing stages of the meeting the panel were asked to identify the one significant challenge and opportunity arising out of the reforms. The challenges ranged from ‘money’ to safeguarding continuous patterns of care for people. The opportunities include the development of IT systems that enable better care, to developing a more responsive system.

And if there is one positive from Macmillan’s report today it is perhaps that the increasing numbers of cancer patients will mean a greater pull on the system to meet their needs better.

…and in other news:

I was delighted to see the following statement on NIHR’s website about the fact that NIHR funding will be considered alongside Research Council funding in the Research Excellence Framework (REF) in 2014. The new guidance also states that applied and practice-based research must be assessed on an equal basis with other types of research. This will ensure full recognition for the clinical and applied research which NIHR funds. In other words it is a strategically very important news.

‘Scroll down’ for clinical trials

To begin with, here’s more on that Pfizer story about use of mobile phone technology etc in clinical trials. It seems to have piqued an interest among many of you anyway.

Also on the subject of clinical trials, I was rather perplexed by this story running out of the NHS Confederation this morning. I’m delighted that the NHS Confederation are at last exercising their PR might in the name of research – it must have something to do with Mike Farrer’s move there as CEO. As you may know, he was previously the chief executive at the North West Strategic Health Authority which led the hallowed ‘NW Exemplar work on clinical trials.

The overall message of the piece about regulation standing in the way of clinical trials is also good. But I am sure the data/evidence they have put forward to support it, passed its sell-by-date a long time ago. If you look at the latest metrics for trials put out by the NIHR Clinical Research Network (CRN) Co-ordinating Centre, one gets an alternative and more up-to-date picture of an improving situation.

Much work is still to be done though.

The really striking bit in yesterday’s MORI survey by the Association of Medical Research Charities (AMRC) was that showing the degree to which patients would be willing to assist in research by participating in trials (72%) or letting researchers access their confidential records (80%). But you have to scroll down the page to see these results.

A bit like we expect patients to ask their GPs to do if they want to turn their willingness to take part in research into action. I am sure I saw an academic paper a few weeks ago which heralded the 39% or equivalent GP practices that were active in recruiting patients for trials in Eastern England. All I could think of was…what about those people living in the catchment areas of the other 61%. Perhaps their GPs still use scrolls instead of prescriptions.

So grist to our mill in making sure the Health and Social Care Bill supports the things that are already being done by NIHR and others to change this.

Flying in the face of an interregnum

As a self-confessed member of the worried well, I ask that people think carefully before they throw strange words at me.  Particularly on the day of a regular visit to my ‘prescription-happy’ doctor.

A colleague asked me this morning how my interregnum was going.  It  sent me into a momentary panic.  Is it treatable I wondered anxiously?  Then I asked myself if I’d been asleep longer than I thought during which time there had been an overnight interregnum akin to other moments in history such as the Spanish Inquisition.

Finally I realised she was referring to my being between two jobs – I start at Ovarian Cancer Action on Monday.  Phew.

The final days of the Department of Health’s listening exercise have seen a last minute flurry of submissions.  I read on BBC News Online that over 15,000 comments have been made and 750 letters received by some poor official who only three months ago had an empty in-tray. The Association of Medical Research Charities’ (AMRC) submission on behalf of the charity sector can be found here – and very good it is too.  Elsewhere the King’s Fund has kept up its usual pace of incisive criticism with a report on accountability in the proposed new NHS set-up.

Indeed, accountability is a theme that has resonated strongly in these final days.  Mark Walport, Director of the Wellcome Trust, referred to it in his Times article yesterday.  The Daily Telegraph reports this morning that the inclusion of patients and the public in the management boards overseeing GP consortia, is likely to be one of the key recommendations that the NHS Future Forum chaired by Steve Field will make when it reports to the Cabinet shortly.

That has to be right.  There seems to be an inherent contradiction between Big Society politics and the NHS reforms if the public are not to be given greater access and opportunity to influence and shape how health care is delivered in their neighbourhood.  Of course, that’s always assuming you believe in the Big Society mantra.

But I do understand the difficulties for the Government in getting the composition of these bodies right given the equally understandable clamour from all and sundry to be represented.  I see the nurses are the latest to make their pitch today.  However, patient and public representation should be one of those ‘red lines’ for charities and the voluntary sector on which we should not give way in the months ahead.

If you are planning a holiday around developments with the NHS reforms then you may wish to take a look at the Financial Times article today which speculates about the timetable from here onwards.

Not long now before we’ll find out how much of its original plans the Government decides to alter or whether it is intent on flying in the face of its own self-imposed interregnum. 

Footnote:  By the way, I heard an interesting bit of ‘Whitehall’ news last week which is that the Office for the Strategic Co-ordination for Health Research (OSCHR) has moved offices from its HM Treasury base (its home for the last few years) and is now located in the Department of Health.  Happy to be corrected if I am wrong.

International clinical trials day and a bit of mopping-up

It is International Clinical Trials Day today and The Cochrane Library has worked with the UK Medical Research Council’s Network of Hubs for Trials Methodology Research to produce a set of new podcasts about clinical trials – well worth a listen.

There was a conference in Vienna this morning organised by the European Clinical Research Infrastructure Network (ECRIN) (Yes, you’ve missed that), and it is perhaps worth reminding everyone that there is an excellent information leaflet and booklet on clinical trials that was produced by the UK Clinical Research Collaboration (UKCRC) some years ago with AMRC’s help.

Some local research centres are also doing special awareness days to highlight their work – for instance, this one in Bath.  And I thought this was a rather nice milestone being reported by the Leeds Cancer Research UK Centre to mark the day – it has recruited 2,000 patients to trials in its first year of operation. 

And if, like me, you intend to hold a roundtable debate with your family this evening about the way forward for the clinical trial you might wish to use this as fodder.

Yesterday while I was at the INVOLVE meeting saying goodbye to its current Chair, Sir Nick Partridge, Mike Rawlins (Chair of the Academy of Medical Science’s Review of Research Regulation), John Bell (President of the Academy) and Mark Walport (Director of the Wellcome Trust) were giving a press briefing on their concerns about the impact of the Health and Social Care Bill.  Mark Walport was on The Today programme this morning

But if you are in danger of going to sleep, have a look at Anaesthesia UK and read the comments made in a speech by Professor Michael Rees, Co-Chair of the BMA’s Medical Academic Staff Committee, about how the NHS reforms are the latest in a long line of recent develops which now threaten to destablise ‘medical academia.’ 

The Today programme reported that the Department of Health had issued a statement saying the Wellcome Trust’s fears were unfounded.  I doubt that very much indeed.  Anyway, we’ll be going at the issue again in a week or so with some added oomph.

Finally, my deepest apologies to Y-Touring for not getting to their special film showing of ‘Mind the Gap.‘  I was mopping-up loose ends and frayed strands.

Department of Health about to have a Field day taking calls, I believe.

The NHS seems to be dominating my life this week.  Quite apart from the news headlines, it has involved two visits to the doctors and a blood test so far ..but I am on the mend I am pleased to report.  All I can say is, a 45 minute wait for a blood test and excellent advice from my GP surgery receptionist (the real power in the NHS as you all know) leads me as usual to a personal conclusion about how good the service is.  The conundrum is why we are all so easily convinced that it is not by the time we get home.

In the meantime, as you know, I have a blue and yellow phone in my lounge.  This is so I can take direct calls from the Coalition Government Ministerial team at the Department of Health about pressing issues of state (and, yes, I have a red phone as well before people accuse me of bias!).  Now that ‘The Killing’ is over I have found I have more time than ever to provide wise counsel.

So I was pleased that my suggestion of a summit (mentioned in this blog a few days ago) has been so speedily (part) adopted as reported in the FT online this afternoon. It says that a number of ‘expert panels’ will look at the reforms with a fresh eye.  But can anyone tell me why there isn’t one on research?  Perhaps the phone went out at that moment in the call, I can not remember.  Anyway, the Department of Health news release is here.  The whole exercise is being called the NHS Future Forum and is going to be Chaired by Birmingham GP, Steve Field.

Looking at the strands, I absoluteoly get the first three.  However, the fourth (about health professionals advice influencing patient care) seemed a little thin although it is hard to tell fully without seeing the terms of reference. 

So I was going to call the Department when I realised that, as it was set-up some months ago, I can only take incoming calls from them.  I’ll let you know when it can make outgoing calls as well as part of the new Department listening exercise.

NHS reforms, research and 'localism'

I really would encourage you to read this morning’s article in The Guardian about the impact of the NHS reforms on doctor  expertise and research.  Its the first article that I’ve seen thus far which really conveys the message about health research that AMRC has been trying to put across and on which we anticipate stepping up our activity as the Health and Social Care Bill heads into the Lords.

It also feels like a significant piece because of the intervention of the President of the Royal College of Physicians, Sir Richard Thompson.  This is the profession’s voice as opposed to the ‘union’ voice as articulated by the British Medical Association (BMA).

At our Science Communication Awards on Tuesday night I got into quite an interesting conversation with some of our guests about the possible implications for research of an NHS reform package which is essentially as much about greater ‘localism’ as it is about establishing a regulated market.

One of the perennial concerns that AMRC often has to deal with is that of small local charities raising money for research taking place at their local hospital or by a doctor who perhaps cared for a loved-one.  It is not the raising of funds that is necessarily the problem.  Indeed, it is important that we do not deter such local passion and conviction.  No, it is the fact that such money is being raised and then distributed in a parochial way; that such local charities very rarely use independent external review (peer review) to ensure they are funding the best science.

That is why – knowing also that administering peer review is not easy or without associated costs – we try our hardest to encourage such organisations to buddy-up with other charities that do have such systems in place or find some way of routing funds to research charities while retaining some sort of footprint on it.

Who is to say that in the new NHS, we might not see GP consortia actively encouraging such local charity connections in the name of ‘so-called research’ – superficially beneficial but in the long-term pretty disastrous.

mICRA, PROSPERO, Beddington and Bell

Announcements are like buses.  There are none for what seem like days and then several come all at once.  My job is to make sure you get on the right one…

NIHR has several announcements out today which AMRC and its members have had some involvement or interest in.  The first is the launch of the new model Industry Collaborative Research Agreement (mICRA).  It will enable research studies to start much more quickly by enabling people to work through the contractual issues more efficiently, particularly issues around Intellectual Property (IP).   AMRC was on the working group that developed it.

I see no reason why the document should not be as reliable, solid, or user-friendly as its automobile namesake, the Nissan Micra, but a lot faster!  And if you can tell me what the link is between that car and a well-known UK charity that is an AMRC member charity you can have a free invite to our Science Communication Award ceremony in March.  

The second announcement of note is the launch of PROSPERO.  Developed by the NIHR’s Centre for Reviews and Dissemination, PROSPERO is the first online facility to register systematic reviewes for research about health and social care from all around the world.  And access is free and open to the public.  An excellent tool in the drive towards greater transparency and the curtailment of duplication.

And if you’re up for a good debate in this half-term week then my favourite blog of the moment is Alice Bell’s on the recent remarks by the Chief Scientist, John Beddington, calling for science and scientists to be more intolerant of those that spin pseudo-science etc.  It has prompted a rather good discussion in my view.

Second Reading of the Health and Social Care Bill: An open letter to MPs

Dear Member of Parliament,

This afternoon the Health and Social Care Bill will recieve its Second Reading in the House of Commons.  The legislation sets out a far-reaching programme for reforming the NHS and the provision of patient care. 

The Association of Medical Research Charities (AMRC) and its 127 member charities believe that high quality research is one of the markers of a modern health service and crucial to improving outcomes for patients.  Last year medical research charities, working collaboratively with the National Institute for Health Research (NIHR), other funders, academics and patients, funded 37% of all clinical trials and other studies on the NIHR portfolio.  The NHS is crucial to the delivery of this research and is one of the reasons why the UK is an international leader in science.

At AMRC’s AGM in November 2010 the Parliamentary Under Secretary-of-State for Quality, Earl Howe, said:

‘We are committed to a future in which research continues as a core function of the NHS. This commitment is written down in the White Paper, where everyone can see it.’

We welcome the fact that the Health and Social Care Bill places a duty on the new NHS Commissioning Board to promote research and innovation and its focus on quality outcomes for patients.  But as the legislation begins its passage through parliament further clarity is needed on how research and innovation will be supported and incentivised in a radically changed NHS.

We ask that you support AMRC and its members in raising the following issues (see also our response to the NHS White Paper) with Ministers as the debate on the Bill opens:

The legislation and the changes it presages are an excellent opportunity to engender a research active culture within the NHS.  We call on the Government to implement the recommendations of the Academy of Medical Sciences’ report ‘A new pathway for the regulation and governance of health research’ aimed at embedding research as a core function of the NHS.  These include developing research activity metrics for research as part of the NHS Operating Framework, and ensuring every Trust Board has an executive director as a member who is responsible for promoting research within the organisation.

AMRC believes there are inherent risks to future research activity such as clinical trials with the advent of GP Commissioning Consortia.  Currently, many patients who wish to find out about those clinical trials in which they can participate and whose GP practice is not research active, have to rely on charities and other sources of help.  Unless GPs are supported appropriately, and incentivised through the new tarriff system, time and cost pressures will act as a further disincentive to their involvement; this despite the evidence that trial participation can lead to better outcomes for their patients. 

Finally, it is important that the Government moves swiftly to implement the aforementioned Academy’s other recommendations for reforming the regulation of health research for the benefit of patients and researchers.   These include the establishment of a single regulator, the Health Research Agency (HRA), and embedded National Research and Governance Service (NRGS) to ensure timely and streamlined approval of clinical trials and other studies.  The Health and Social Care Bill will have important implications for how the HRA might operate in practice not least in setting out the roles and functions of other regulators.

As you may be aware, the Coalition Government committed to a strong and sustained budget for health research in the Spending Review.  We welcomed that decision.  We hope that you will now support AMRC and its members in urging Ministers to ensure that the potential of this funding is  realised for patients by ensuring that the NHS is fit for research now and in the future

Yours faithfully,

Simon Denegri, Chief Executive

Health and social care reforms on trial

What better starting point for today’s blog than the comments of two leading clinicians speaking about the importance of clinical trials to patient outcomes.  First, Dr Duncan Wheatley, a Clinical Oncologist and Lead for Research in the South West Peninsula, who is quoted in a BBC Cornwall story today about medical research at the Royal Cornwall Hospitals Trust as saying:

‘It makes a huge difference. Obviously we can’t guarantee that the new treatment will always be better than the old treatment, but patients who go into the study, even if they get the normal treatment, generally get slightly more intensive care.”

The story talks more specifically about how research has trebled there over the last three years with now over 300 studies underway and over 1400 patients involved.  It looks as though the Trust is in the process of building its research pages but I hope they follow-up the press coverage today with a bit of showcasing on the Trust home page as well.   I believe most of the research there takes place at the Knowledge Spa facility in Truro and that charity involvement occurs across a number of disease areas including MS and arthritis.

The second quote is from a little earlier in the month, this time from Prof David Newby who is NHS Lothian’s R&D Director.  In this Scotsman piece about NHS Lothian’s strategy to increase the number of non-commercial trials by a fifth he says: 

‘That’s why our research and development policies are so important. It provides major benefits for patients in our area.’

And today you may have seen the story about the breast cancer drug that migth be effective against lung cancer (more trials needed) or indeed this one about the £1 million funding being provided by Arthritis Research UK for a clinical trial in Birmingham to improve treatment for those with Sjorgen’s syndrome. 

It is the degree to which health and social reforms enable us to grow such research activity in England that they will be judged by the members of AMRC.  With the Academy’s report and recommendations on research regulation now out there and the results of the NW Exemplar Pilot published today I feel we might be close to having a finely-tuned engine for clincal trials.  

But it is the chassis  around us – namely the NHS and how it is run – that might now fall apart around us in Keystone Cops fashion.

And for those of you who remain unclear why medical research charities remain concerned about the impact of the NHS reforms, I encourage you to cast your eye over the appendix to the response we put in to the Department of Health’s ‘Information Revolution’ consultation two weeks ago. 

This summarises some focus group research (quoted in the Academy’s report) that we did into patient and GP attitudes to clinical research and use of patient data. The basic message coming out of it is that most GPs are simply not set-up to do, nor engaged with, research to the extent one would hope. 

So what’s one to do when presented with reforms that put GPs in the driving seat for how our health service is run? 

I hope that some of my concerns might be allayed by an NIHR seminar I am attending next week on embedding research in the new NHS.  In the meantime the scenario reminds me of a relative who bought a Range Rover with a diesel engine and decided to put a petrol engine in it.  To cut along story short, the vibrations were so bad that the chassis fell off.

Perhaps a clinical trial for how these reforms might best support research would be wise?  But, then again, Andrew Lansley is a man in a hurry.

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