Andrew Lansley

The results of the annual cancer patient experience survey are out today.

For those of us committed to improving patient access to clinical trials and other research, this year’s report is particularly interesting.  As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed with them.  You can find the results of these particular questions on p57 of the report linked-to above.

The overall finding is that 33% of cancer patients said that taking part in research had been discussed with them but 67% of patients said it had not.  There are considerable variations according to tumour type with urological cancer coming out worst.  By Trusts the percentage of patients who were asked about research ranges from 14% to 62%.  Whatever way you cut it – by tumour type or geographical area – the majority of people who were asked were glad that the subject had been broached.

In a field which has built a significant reputation for improving patient access to research – thanks to the National Cancer Research Institute (NCRI) and the National Cancer Research Network (NCRN) – these figures show the work still to be done to bring research to the fore of the conversation that cancer patients have with their doctor. I would suspect that other conditions have a steeper hill to climb in comparison.

There is no magic bullet to improving access.  The survey highlights the future importance of things like the NHS Choice Framework and the strengthening of patient rights through the NHS constitution in empowering patients to ask the question. But a lot will also rest on ensuring NHS Trusts prioritise the access agend; that they make it their job to raise awareness of their research activity and the importance of patient participation in it.

This week, through NIHR CRN CC, we kicked off a piece of work – Involvement4Access – to bring together patients and support them as leaders within Trusts environment to improve patient access to research.  On Wednesday I had the opportunity to attend a Royal College of Paediatrics and Child Health (RCPCH) workshop about research where parents and young people reported very real differences in the willingness of hospitals to advertise research openly on wards, receptions areas etc.  The reasons put forward by hospitals for not being more open about research are often misconceived if not plain bunkum.

But improving access will also require patient groups and charities to do more to support the patient voice in lobbying Trusts, health professionals and others to change their approach.  There is much in this report and in the recent NIHR league tables of research activity to aid this work.  Yet patients need the right tools and information that they and their families can use confidently in order to broker the conversation with their GP or consultant. They also need to hear more from their representative bodies about how they should consider taking part in research as part of their overall treatment.

At the same time, the survey findings about people who were not asked about research on whether they would like to have been, highlights the fact that to participate or not is a  ‘personal choice’ which must be respected.  53% of people said they would like to have been, 47% said they would not have liked a discussion.  Insight into the patient experience from a research perspective – at what point in their care and treatment should the conversation take place, with whom and how – will increasingly be important.  That’s why today’s survey must be repeated but also used as a prompt for further inquiry.  It should also be repeated in other disease and conditions areas as well.

At the end of the day, providing better patient access to research is about improving patient choice, leadership, insight and voice.

Here are four exceptionally useful guides to ensuring good public and patient involvement and engagement in the new local NHS structures such as Healthwatch, CCGs etc.

Get smart about engagement series introduction

Engagement for commissioning success

Working with lay members and patient representatives

Working with LINks and local HealthWatch

My sense is that CCGs are taking very different approaches to this agenda – which has both strengths as well as weaknesses – but these might help to ensure some consistency as regards core values and principles. Spread far and wide please.

From NHS Networks.

We now need one for research!  Or, at the very least, for the next versions of these to address research.

Various reports today about the Secretary of State for Health, Andrew Lansley MP‘s, statement in response to a question today in the Commons that he is working to introduce an ‘effective compliance regime’ to ensure local NHS organisations implement NICE recommendations.  Those with children will no doubt empathise.

I’m not sure that as a statement it merits the headlines it has got just yet.  But it does give me a good excuse to point to the fact that NICE has updated its patient and public involvement policy.  Other than being updated to show how involvement is happening in some of NICE’s new areas of work such as QOFs (Quality Outcomes Framework) and QUIFFs (that’s a joke) I’m not sure if other significant changes have been made on the previous version.  Maybe someone from NICE will elucidate us.  Anyway, it’s a good policy.

You might also want to take a gander at NICE’s section of Fellows and Scholars approach which ‘recognises the achievement and promise of NHS health professionals, contributes to their professional development, and fosters a growing network of health professionals linked to NICE who will help to improve the quality of care in their local areas.’

Having sat throught three absorbing days recruiting new members of INVOLVE, it does concern me that members of the public asked to take on one role or another in advancing research, continue to confront what I can only term ‘status’ issues as regards the attitudes towards them as exhibited by professionals (and others, I hasten to add) around the table.

It can manifest itself in many ways – from the purely dismissive, to arguments about paying them for their involvement.

Chair: ‘Why should we pay you £150 to attend a meeting?’

Lay person: ‘For the same reasons the Trust is paying you £1,000 for doing the same thing?’

Chair: ‘But I’m a professional.  Anyway, I’m not sure we can afford it.  Our £150 million organisation doesn’t have a budget for it’

Lay person: ‘I aim to be professional about the task too, with your help.  It’s only four meetings a year.  Given that we are awarding £10 million in public money to research, I’m not sure we can afford not too, can we?’

And so it can go on.  But, seriously, should we be looking to provide a better ‘badge’ for public and patient representatives playing a formal participative role on review panels, committees etc – just as NICE and others look to do with researchers and professionals?  Might it help communicate their role better, break down some barriers?  Or would it entrench attitudes and be counter-productive in over-professionalising what patients and the public are doing?

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.


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.

From the NIHR website today following the Government’s response to yesterday’s publication of the NHS Future Forum conclusions.

A real result as far as I can see with regard to excess treatment costs as well as the strengthening of the duties and responsibilities to promote research in different parts of the NHS structure. Very good news indeed and congratulations to all the good work by AMRC and others on this.

For the usual thorough and sharp analysis of all the announcements in full, go to Becky’s Policy Pages.

The prospect of the legislation going back to committee gives us a real opportunity to press on the very vexed issue of how we ensure research is driven as an activity at a local level.

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.