The Times

On New Year’s Eve I took my family up ‘The Shard,’ London’s newest and tallest landmark.  As we looked Eastwards a squall was readying itself over the North Downs; the latest in a succession of storms to batter our shores over the past few weeks.  Low-flying clouds threatened to swallow us whole.  The wind roared around the open viewing platform.

In the run up to New Year’s Day, some of our media and politicians concocted a storm of sorts about the opening up of our borders to Romanians and Bulgarians.  For a so-called tolerant country we certainly know how to serve up vindictiveness and prejudice on a repulsive scale don’t we?

Fact is we probably have more to fear from the Chief Executives of Swiss-based pharmaceutical companies. For they seem all too ready to serve up damaging judgements on the UK’s health system.  Earlier in 2013 I had cause to write about those chocolate teapot moralists from Novartis .  They had felt it necessary to call an emergency meeting in London to admonish us about how the state of clinical research here (I hope they got my Xmas card with its personal message about the UK achieving ‘first global patient into trial’ in 23 commercial studies during 2013).

Then, over the holidays, the CEO of Roche Severin Schwan decided to fall back on tales told to him by a few mates who have lived in other countries as evidence for telling The Times (paywall) that the UK doesn’t value life.  Perhaps they were just happier because they could buy it?  I’m afraid the rest of the interview – and a broader contextual piece about pharma in The Economist in which Schwan also features – just goes to prove that Mr Schwan and his colleagues know ‘the price of everything and the value of nothing’ as my mother would put it.

Last year, the pharmaceutical industry was buffeted by the successful #AllTrials campaign calling for all clinical trial results to be published and to be made available.  The focus and intent of the campaign was strongly endorsed by the House of Commons Science and Technology Select Committee.  Industry execs probably thought they were through the worst of it with the deal hatched in Brussels just before Christmas over the new EU Clinical Trials Regulation.

How wrong they were.  Today’s report by the House of Commons Public Accounts Committee just shows it was the eye of the storm.  There will be no let-up in this drive for greater openness and transparency until practices change for the good and for good. And we are a long way from it happening just yet.

With a £12 billion profit to hand surely even Mr Schwan and his top execs can afford to see that there is an ethical and moral bottom line in play here?

A Very Happy New Year by the way.

 

 

 

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.

A brief but important mention of the letter in today’s Times signed by over 100 cancer scientists and doctors.  The letter cites Breast Cancer Campaign (an AMRC member) and highlights the importance of the Government-backed Charity Research Support Fund (CRSF) to the funding of research in universities by medical research charities. 

If you want a succinct but well-articulated case for CRSF then you need look no further than this letter.  And it’s significant in my opinion that the argument is being made directly by scientists themselves rather than charities.  This is not special pleading.  The fact is that the Fund is an important foundation for the partnership between Government, universities and charities in the name of research, and a vital mechanism for helping to leverage research funds from our sector.

You may also wish to look at the joint statement on CRSF that AMRC produced with BHF, Breast Cancer Campaign, Cancer Research UK, the Wellcome Trust, Universities UK and the Russell Group in July this year.  The statement was submitted with our spending review submission.

All our discussions with Government thus far suggest the arguments for the Fund have been accepted just as those on ‘science = economic growth’ were taken on board by HM Treasury with its spending review announcement.  But how this translates into actual money won’t be known for possibly a few weeks yet. So letters like today’s can play a useful role in keeping the issues to the fore.

The new Science Minister, David Willetts MP, gave his first press briefing at the Science Media Centre yesterday.  His comments have been reported in a number of places including the BBC.    But Mark Henderson’s blog at The Times is the most detailed.  The Minister seems to have handled the funding question in the only way he can with the basic message being  – ‘I will defend science stoutly but there are tough times ahead.’

His comments on other issues of concern seem to have been well-balanced.  He is clearly keen to  listen and get more well-informed on the issues at this stage – AMRC wrote to him earlier this week setting out the medical research charity agenda.

As an aside you might want to check out the work of the Science Media Centre (see tag below).  They do a huge amount in terms of co-ordinating responses to media stories and interest in science and research, as well as arranging frequent briefings across many different science issues. They are a long-term partner organisation of AMRC and one of the best things that has happened to science in the last decade.

..am posting this bit at a later date but Willetts made an interesting first speech as Minister at Birmingham University today (19th May).   He makes positive noises about the dual support system, ensuring a diverse funding base for research and there are reports elsewhere that he was positive about the Academy of Medical Science review of regulation.  REF and the impact agenda look ripe for change though.

It was only this week it dawned on me that, in our gripping and rapidly daunting state of statelessness, I had entered a self-imposed state of purdah with my blog.  For no reason at all.  No more…

If you are looking for some insight on what a hung parliament will mean for science then you might be interested in the following article on ScienceInsider which assumes a Conservative/Lib Dem arrangement.  But if we were speculating before the General Election about the impact on science of a clear result, then we really are in unchartered water now.

If you want some more on the science-relevant comings and goings in parliament then check out the New Scientist’s blog ‘The S word.’ Some of you may have also seen Mark Henderson’s blog which looks with dismay at the new parliament’s make-up of MPs with a science background.  They put it at 77MPs.  We are doing our own analysis at the moment.

I was at a lecture being given by Nial Dickson (Chief Executive at the General Medical Council) at Green Templeton College last night as the news filtered through that Gordon Brown was stepping down.  As an aside you might want to check out the new Health Experiences Institute at Green Templeton College which is a welcome and innovative newcomer to the growing field of expertise.  It aims to look at the  ‘attitudes, values and experiences of people coping with illness or making decisions about their health, and to use this to make a difference.

It wasn’t too long before the after-lecture questions and discussions last night  turned to fiscal issues.  There was much talk about ‘quality improvement’ in the NHS which seems to be the new mantra for how we will survive the coming age of austerity.   Science watch this space because it is undoubtedly coming our way too.

The discussion reminded me of the supper I had with some colleagues from member charities a few weeks ago.  Our premise was to discuss what might be after the General Election and plan accordingly and I dug out my notes of the conversation today.  Seems that what I wrote then is prescient for the role of medical research charities in an era of new politics: to advocate for what is best for research of patient benefit; to be the innovators in the system and; to unsettle the status quo where this is self-serving.

In that sense nothing has changed.

This week’s story about the world’s first transplant of a new trachea airway in a child using the child’s own stem cells  has a significant charity dimension to it.

One of the many partners in the European-wide team who made it possible is Great Ormond Street Hospital Children’s Charity who incidentially became an AMRC member this week.  Together with University College London (UCL) Institute for Child Health they are the largest centre for paediatric research outside the US.  Indeed, Great Ormond Street Hospital Children’s Charity are in the top ten charities in the UK by research expenditure.

Space and time does not allow journalists to detail the many partnerships and connections between funders and scientists which are an inherent part of the history of many scientific breakthroughs.  But you can be sure that behind every headline there is not just one story but often many stories of howthe  science was developed.

A very simple and impactful visual representation of this is contained in the Wellcome Trust’s new History Timeline on its website.  It takes a bit of finding but if you click on the ‘Read a research story’ button and click through on ‘high quality researchers,’ ‘Promoting recovery after stroke’ followed by ‘funding timeline,’  you’ll find a graphic showing all the funders that have fostered the career of one particular talented scientist (Dr Johansen-Berg) and her work looking at the anatomy, physiology and connections in the brain and how these change after stroke.  As the website says, it is research that is likely to have a ‘profound effect on clinical neuroscience and beyond.’

The timeline shows how Dr Johansen-Berg’s work has been funded by six different funders at different points since 1997 including three AMRC members – the Wellcome Trust, MS Society and Stroke Association

Who knows we may also be reading the results of these charity connections in the fulness of time.