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So, there’s been a lot of activity around the NHS Constitution this week.
The group reviewing this document, led by Dr Steve Field, held a twitter discussion one lunchtime and you can read the extracts of this on the Department of Health website here. Then, yesterday, Jeremy Taylor from National Voices and a member of the review group wrote a rather good blog about the challenges of arriving at a Constitution that is both based on rights and values and has teeth .
This is all a very sensible bit of sounding out of people’s views ahead of the full public consultation on the Constitution towards the end of this year.
One of the immediate issues as noted both by the tweeters and Jeremy is the document’s lack of visibility. So, in answer to my own question posed in today’s blog headline, while you of course can’t write the whole document in 140 characters it would be a noble aspiration and one fit for our ‘social media’ orientated culture to try and sum up it’s key pledge to citizens in 140 characters. The statement then might be a footnote to many documents and communications received by patients, with it gradually seeping into society’s psyche.
I seem to remember that in the days of ‘Clause 4,’ the Labour Party did the very same thing by putting the wording of this on the back of membership cards. To great effect given the numbers of people who were able to recite it. Those were the days he says almost as if it is a confessional. Anyway, I am going to have a go at my 140 characters version over the weekend.
I’ve also been pondering what has made the US Constitution such a successful document – and the one that springs to mind immediately when we think of constitutional matters – over many hundreds of years. There is something about its clarity of language, its vivid nature, the fact that it is concise, its ability to enshrine checks and balances between institutions but also between the individual and these organs of power, and the way it future proofs itself by building in an acceptance that not only do things change and providing mechanims for dealing with this. Plus, finally, you can’t consider its resonance through time without also dwelling on the notable characters behind its compilation. They were about as far removed from the pen of the modern policy-maker as you can be without the whole thing becoming fiction.
Perhaps that’s the real challenge for the future NHS Constitution as Jeremy sort of implies – whether it becomes fact or fiction.
You can find the full text of the Prime Minister’s speech at the Global Health Policy Summit in London today here.
David Cameron’s remarks have caught the headlines because of his announcement about the new Phenome Centre.
But, as important, are a number of other areas of his speech. These deal with the importance of the NHS to making research happen, the Government’s commitment to enabling the use of patient data for research including the forthcoming consultation on the NHS Constitution, and his ‘Dementia Challenge.’ If ever we had an insight into his personal priorities for his administration across health research then this speech is a pretty strong synopsis.
In other news today, the Department for Business, Innovation and Skills, announced that Donald Brydon, current Chair of the Royal Mail Group, will be the new Chair of the Medical Research Council (MRC) succeeding Sir John Chisholm in nine months time.
This morning’s news bulletins are full of stories trailing the Prime Minister’s speech in London later today, when he is expected to launch a national challenge on dementia – from accelerating research funding and setting up a new academic science centre, to establishing a national screening programme and encouraging people to donate their brains to research.
Just over twenty years have passed since I climbed the steps to the offices of the Alzheimer’s Disease Society (now called the Alzheimer’s Society) then situated above a branch of the Abbey National Building Society on Balham High Street in South London, to begin work as their parliamentary officer. In those days I think the Society spent about £75,000 on research compared to the several million both it and Alzheimer’s Research UK spend today. How far we have come?
Twenty or so of us were crammed into that office and I seem to remember working off the top of a filing cabinet for much of the next three months before we moved into central London. Either that, or travelling round the Society’s local branches up and down the country; a network of the impassioned – spouses, sons, daughters and friends, brought together by their common experience of caring for a loved-one. Yet it was also a community isolated by this shared experience, such was the stigma and lack of attention paid to dementia then. And this sense of abandonment by society seemed cruelly accentuated by the very policy that was supposed to remedy it – community care; but that’s another story. It is still shocking to me that ‘then’ was 1992 and not 1892.
Over the last two decades, there has been much progress in terms of public awareness, the treatments available to people with dementia, and in terms of the quality of health and social care provided. But the variables in determining whether, as a carer or as a person with dementia, you receive the right support and help are far too many. The decisions by commissioners, providers and others that influence them, can feel far too abitrary. The resulting isolation for loved-ones and their families, all too real.
For too long, dementia has suffered from a lack of attention and forward-planning at the very heart of Government which has been so pivotal to progress in other diseases such as cancer. Today’s expected announcement by the Prime Minister, David Cameron, is therefore important not only because it comes from the top, but also because it begins to put in place key components of a strategy – from boosting research funding to improving diagnosis – which put dementia on a par with cancer, heart disease and other conditions as a national priority. I am looking forward to seeing the full plan.
I hope also that the Prime Minister’s anticipated choice of words in describing what needs to happen – ‘a national challenge’ – will begin to change the lexicon in common use when it comes to dementia; away from the numbing defeatism and ageism of ‘crisis,’ ‘timebomb’ and burden etc towards a more considered terminology which will inspire a shared commitment and endeavour. We should never under-estimate the power and importance of language in these campaigns.
One final reflection.
It is pure coincidence that last week I had to pen the Foreword of a new book by a colleague. In it, I mentioned how I witnessed people with dementia – aided by earlier diagnosis and new treatments – begin to have a voice and directly influence their care as well as local and national policy for the first time. I have no doubt that their advocacy has been instrumental in getting us to this point.
Dear David Cameron, being a ‘research patient’ is one thing, it’s being a ‘research citizen’ that interests us more
Wall-to-wall coverage of the Prime Minister’s speech yesterday about life sciences and putting the NHS at the heart of innovation. All a bit frustrating therefore, that the full transcript of his speech is not yet available on the No 10 website as far as I can seen.
My eyes nearly popped out of my head when I saw the headline of the former: ‘Everyone to be ‘research patient:’ says Cameron.’
But what if, Prime Minister, I thought, we pushed that further and developed a system in which every patient was in fact considered to be a ‘research citizen,’ regarded as full members of the ‘health research community,’ with clear rights and responsibilities?
That is a more interesting and challenging idea with greater potential for helping the wider life sciences industry.
It requires a culture shift away from simply viewing the NHS through the eyes of researchers (as yesterday’s announcement seemed to do at times) towards a position where we also view matters through the eyes of the patient. And not just as a participant in a trial but as an individual who can shape, inform, develop and disseminate research if given the right access and the right opportunity.
It would also require us to be brave enough to equip patients with the tools to exercise and, dare I say it, make clear choices about research, their data etc? And it requires a concerted effort to change the paternalistic attitudes that are embedded in our health professions and which only serve to disempower patients and restrict their life choices. As many independent commentators have been quoted as saying today, some of the biggest bugs that hold back research and innovation are alive and well in many GP surgeries?
This is demand-side economics at its most basic if you want to look at it like that. But it is just as important as the supply side stuff that was your focus yesterday. I am thinking that it uncannily sounds like the ‘Big Society’ or a patient-centred NHS. No matter, it goes to the heart of yesterday’s plans to boost innovation in the NHS.
There is an article in today’s Times Higher Education (THES) about a report from Science is Vital campaign on the current crisis in the career structure for scientists entitled: Careering Out of Control: A Crisis in the UK Science Profession? You can also read more on the Guardian blog.
Looking through a wider lense still, I see that Mark Henderson has written an excellent piece in the latest issue of The Times Eureka magazine about how UK scientists and organisations won the battle with last year’s comprehensive spending review result but not the war. Not least because, as the Campaign for Science and Engineering (CaSE) has reported the cuts to science will be much greater than expected not least because of the higher than expected rate of inflation.
The Chancellor of the Exchequer, George Osborne, said at the Conservative Party Conference as he announced a bunch of tinderstick intiatives in science, that he wants the UK to produce the greatest scientists . And yesterday the Prime Minister, David Cameron, implored us to believe that we can fight our way out of the current turmoils.
Yet, with the science funding picture as it is and the Government dogmatically sticking to its mantra it is difficult to see us fighting our way out of a cardboard box at the moment, let alone create the best and the brightest scientists.
I found myself deeply moved by the news and growing tributes rightly being paid around the world this morning to Steve Jobs following his death from pancreatic cancer. Whether as innovator, designer or consumer champion he has been a hero to many including myself.
When I got to work I trawled through some of Steve Jobs quotes on the web to remind myself of why and how he was different. These two struck me:
A lot of companies have chosen to downsize, and maybe that was the right thing for them. We chose a different path. Our belief was that if we kept putting great products in front of customers, they would continue to open their wallets.
And this too:
Quality is more important than quantity. One home run is much better than two doubles.
So, if you are looking for more information about today’s Government report: ‘UK Taking Stock of Regenerative Medicine in the United Kingdom’ you really do need to visit Becky’s policy pages as she has, per usual, taking the words out of my mouth.
If am being absolutely honest though, I am more looking forward to tomorrow’s report into changing human behaviours by the House of Lords Science and Technology Committee as chaired by Baroness Neuberger. There have been a couple of preview pieces including this one in yesterday’s Observer which is by far the best.
My sense is that the report will say that the ‘nudge’ approach to changing behaviours is, like one of those self-help books that seem to fill the shelves at WH Smiths these days – interesting, titillating but lacking in an evidence-base to support its place at the heart of Government policy.
It’s not the first time this has happened you might say…and you’d be right.
It is a question all Boards and Committees should ask themselves.
Yesterday the Prime Minister announced the final names making up the re-formed Council for Science and Technology. Many of the final selection are people I much admire and David Cameron can be confident he is in good hands when it comes to scientific advice.
But it is curious – and this is purely a personal opinion – that the new membership would seem to leave the Government strategically naked when it comes to that most difficult of tasks – how to communicate scientific endeavour when it pushes the boundaries of public acceptability. I certainly can’t see a name that is instantly recognisable as filling that role anyway.
The common thread running through recent controversies such as GM foods and hybrid embryos is that the then sitting Government found it a struggle to steer a steady and confident course to safety. In the latter instance, it positively scrabbled and begged others outside to make the case on its behalf. Fortunately, the resulting campaign was a success.
When the Government announced the appointment process for the Council I did get the various application papers with half a mind to apply. For I may be wrong but I am sure that it was actively seeking candidates who might be able to give a more ‘public’ view of things.
It would be interesting to know if such people put themselves forward wouldn’t it?
In the meantime I worry that David Cameron may well emerge from CST meetings enthused by his latest science lesson but with few pointers on how to pass it on to the nation.
Sounds like the first job of the new Council might be to do a skills audit. As the old-hands in Board-land will tell you, when in doubt, co-opt or get a guest speaker.
David Cameron was on the stump yesterday selling, or should I say ‘re-selling,’ his Big Society vision. It has been pilloried in most of the articles that I have seen but if you wish to read his speech in full and make your own mind up then you can find a copy on the New Statesman website.
The PM’s approach to the ‘Big Society’ reminds me of the early days of the New Labour Government when everything was branded ‘the people’s..’ this or that. Like then, I think the Big Society language jarrs with many people quite simply because it feels as if they are bing sold something they already own.
That, and the fact that the undercurrent running through it – that we are all somehow not pulling our weight in the name of society – probably feels a little too hard to bear for the many people using all their energies just to make ends meet for their own family and friends.
ACEVO pre-empted David Cameron’s speech with a report of its own commission on the Big Society. It said that the Government should be clearer about its vision and give it a bigger push. It welcomed the Government’s ideas on promoting greater giving while saying they could have gone further.
I wholeheartedly support measures to make it easier for people to give to charity, but I do not think this is the issue that needs addressing.
The real problem with the Big Society vision is that it is a totally utilitarian view of volunteering or citizen involvement. It doesn’t encourage us to examine the relationship between charities, citizens and the state, rather it simply asks us to ‘serve.’ It is top-down and top-heavy in tone and style rather than liberating or enthusing. It is of its time but not forward thinking.
Those who visit this blog regularly will know that we’ve been following progress with the plans to build the UK Centre for Medical Research and Innovation in London ever since our first post. So, in what feels like an early Christmas present for science, it is good to be able to report that yesterday Camden Town Hall councillors gave their go-ahead to the project.
The Wellcome Trust has a straightforward press notice on it (they are one of four partners involved, the others being Cancer Research UK, UCL and the Medical Research Council) but I can highly recommend the UKCMRI website as well where you can get a better idea of what the centre will look like and what it will do. Let’s hope the new centre will be snowproof unlike the rest of London.
In other news this week..this hasn’t been picked-up very widely but the Prime Minister’s Office announced the membership of the re-constituted Council for Science and Technology which was set-up in the early nineties (and re-launched in 2007) to advise the PM on cross-cutting issues of strategic importance. The Council is also advertising for ten independent members.
Thw word is that Monday looks like the day when the Government will announce the science budget allocations…and I also hope that we can publish our independent report of the AMRC/INVOLVE patient workshop on research regulation.