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Our NHS: If there is a patient on board could they please make themselves known to the cabin crew

The NHS would appear to be suffering an in-flight emergency. It is locked on auto-pilot. The cabin crew are unsure what to do. A few are close to panic. The nature of the problem is unclear. The causes indeterminate. No one was trained for this.

Cabin crew announcements become more insistent and louder by the minute. The passengers are told to stay in their seats with their seat-belts on. Window shutters remain closed. The drinks trolley stays firmly in its bay.

Disaster looks certain and everyone braces themselves for impact. Every Act of Parliament thar has ever had anything to do with the NHS flashes in front of their very eyes.

Until, that is, the youngest stewardess seizes the microphone from her boss. She pulls no punches as she candidly tells her fellow cabin-dwellers what is happening. ‘Any ideas?’ she asks. ‘Could any patients on board please make themselves known to the crew?’

Speaking to reporters afterwards here is what was recounted. First, some bright spark lifted their window shutter and it appeared the plane was still in one piece. Then they all did and it was clear they had never left the ground. So another who knew a thing or two went forward and helped the captain get the airplane off the ground. They didn’t understand the dials but, my, how they could pull back on that yoke.

A hysterical patient was given water by his neighbour and then sedated. They all agreed to even get rid of the baggage just to make sure the aircraft would lift off before the end of the runway. For they knew everyone’s life depended on it and they all wanted to get to their destination – which they had all chosen. One even had a friend at the other end who talked them down to the airport there.

Having listened to yet another radio discussion of the great and good about the NHS this morning with not a patient in sight….

And having observed last week’s spat between the overly defensive (we all work hard!) Royal College of General Practitioners (RCGP) and the ever so slightly hysterical Patients Association ( are there any solutions to the problems you would like to actually own yourselves?)….

One can’t help but think that we are partly at risk of talking this plane into the ground ourselves. There’s a lot of shouting going on and not a lot of listening. Cockpit communication has broken down. This can only spell doom or the hardest of landings at the very least.

And yet I wait to really hear ‘the system’ ask patients and the public for their help. Not just their views. Or feedback on the non-threatening. But their support in dealing with issues for which they have run out of solutions. And an acceptance that actually for many patients the present can feel no better than boarding a low budget airline.

I am reminded of a recent story about a GP’s Patient Participation Group. It has excelled at improving the decor. It has even had new automatic doors installed. Great! Brilliant! Just imagine how they might help improve doctor-patient dialogue. If only they were involved. But they are not.

Crash positions!

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.

Back to the Future on NHS Reforms

Here’s the BBC report on how the Health and Social Care Bill will now be scrutinised following the changes announced a few weeks ago. I think other reports have mentioned people’s criticisms of it going back to the committee stage for only ten days in all.

NHS reforms emerge from the ‘House of Corrections’

We can all have a field day (pun intended) now that the conclusions of the NHS Future Forum have been published. For 24 hours at least anyway.

The next step is the Government’s response which is due tomorrow. Hopefully they will have taken on board the NHS Future Forum’s overall message that it was a case of the NHS reforms not being ‘able to work’ rather being ‘unwilling to work’ when the Government referred them to its ‘House.’

National Voices have posted a quick pros and cons sheet on the report.

The strong patient component to the recommendations is excellent – both the Citizen’s Panel and the underpinning ‘Right to Challenge’ services and standards of a poor quality. There does not appear to be a specific recommendation on research but then it has never been considered ‘high politics’ in the NHS debate thus far. That may well be to its benefit as long as the message is getting through to the people and organs responsible for implementating Plan B.

Indeed, when I looked at the recommendations my sense is that the revised legislation is going to be more ‘enabling’ than anything else – establishing and getting various quangos up and running as soon as possible to design the future. Not designing the future itself so much anymore.

Cameron’s High Five

A reminder that David Cameron will be making five pledges on the NHS in a ‘keynote’ expected this week (possibly tomorrow (Tuesday)). Things like..there will be no privatisation, and an end to waiting lists etc.

The Economist’s ‘Leviathan’ blog - which is always worth a look – takes a rather derogatory view of the Prime Minister’s five-a-day prescription, calling it mood music.

I read it as a sortof high-five to the NHS to rebuild confidence. But it will be the stuff between the lines that we’ll need to look out for, since this will hint at the conclusions drawn after the recent ‘listening exercise.’

Back to First Principles with the NHS Reforms

The word on the street is that the Coalition Government is going back to first principles in its review of the proposals in the Health and Social Care Bill. 

As each day passes, the ‘natural break’ begins to feel more like gardening leave for a piece of legislation that was supposed to be one of the Government’s flagship Bills.  At the moment it looks possible that the Bill will be re-committed in the autumn.  I assume that this will push back the timing on the ‘second session’ of parliament legislation as well – this second Bill is significant to health research because it will deal with changes to the way in which research is regulated. 

So, from a flying start earlier in the year, it feels that the whole thing is becoming akin to a set of roadworks – the bollards are omnipresent as is the hole in the road and the queue of traffic but not much else is visible in terms of progress. 

Still we should be pleased that the Government is at least prepared to radically re-think its plans.  This week, you may have seen, 40 charities issued a statement urging there to be a stronger patient voice in the plans (quick plea to press officers – if you are going to issue something to the media, please make it available on your website the same day, I could not find it on any of the charity websites I checked).

And Cancer Research UK also held a very well attended briefing for MPs and others on the research aspects of the Bill. 

This is going to run and run and run…

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.

Are you researchy?

The NHS Future Forum – the recently announced exercise by the Department of Health to get the NHS reforms back on track – has today published a list of its members.  Further names are likely to be added it seems.  It includes a few ‘researchy’ people as we tend to call them here in the office – a useful tag which can extend from Nobel prize winner to a participant in a clinical trial.

Imperial and UCL – which are both full of researchy type people – have both been announced this week as new partners in the UK Clinical Medical Research Institute (UKCMRI) enterprise to be built in London.  The press release is here and, actually, there’s also a rather interesting item about the archeological dig taking place on the site which used to be home to a railway goods yard.

I loved this article from the Belfast Newsletter about a new initiative by the Northern Ireland Cancer Trials Centre (NICTC), formerly known as the Northern Ireland Cancer Clinical Trials Unit to recruit cancer patients and carers to join the Northern Ireland Cancer Research Consumer Forum and infuence research there.

While I am at it, I thought I might also mention Alice Bell’s rather useful (which is much better than simply being ‘interesting’) article about public engagement.  Lots of common sense in here, and if you are about to embark on a public engagement exercise then I fully commend her advice to you as your starting point.

If you are heading north over Easter on your natural break then you may wish to go to one of the many Edinburgh Science Festival Events taking place until 22nd April.  I spoke there once and have never been asked back again!

And on the train journey – or even if you are stuck at home – you might consider entering the Wellcome Trust/Guardian/Observer science writing prize – closing date is 20th May 2011.  That’s if you are researchy minded of course.

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.

A rest is as good as a change…

UPDATE – so here is the BBC report on Lansley’s statement this afternoon.  The ‘natural break’ in proceedings would seem an opportune moment for AMRC and senior leaders across clinical research to press to meet with Ministers and discuss some of the reforms that would help the legislation be a force for good for research.  Watch this space.

..Or so my doctor tells me.  The Guardian is reporting that the Health Secretary is due to talk to MPs today about a ‘3 month’ pause in the passage of the Health and Social Care Bill to give more time to bring the community (i.e. everyone) on side.  Will post thoughts here later when more is known.

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.

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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