charities

Research Fortnight have posted a blog I wrote prior to Christmas in which I gave my ‘glass half-full’ take on what the science budget allocations mean for the Medical Research Council (MRC). 

Elsewhere..in today’s New Year Honours, congratulations go to Adrian Smith, DG Knowledge and Innovation at the Department for Business Innovation and Skills, who has been knighted.  Sir Adrian’s ‘knight in shining armour’ role in the spending review has been widely commented and so what better conclusion to the year.  The Times Higher has a comprehensive list of other honours made should you be looking for one.

And Third Sector magazine has a brief article on charity honours.

Have a safe one.

We are packing up.  No, no, no, not in that sense.  It is just that we are moving office in a few weeks. 

I am ashamed to say that I am the last of our team to begin the task of separating the recently aquired detritus from the must-keep documents that tell something of our history.  But I am already unearthing a few gems.

Yesterday evening I stumbled across the annual ‘handbooks’ that we published in the eighties and nineties.  These guides list our then member charities along with details of the grants and types of project each of them funded (details we now publish online).  All contain a short foreword.  Curiosity made me look at those from the early eighties:

1983 – ‘…there is no doubt that, generally speaking, university research is well-served by the charities.  The funds available not only provide a significant contribution to the overall level of funding, but are very effective in the way they can provide relatively small amounts of funding when and where this is most needed.’

1984: ‘There is widespread concern that research institutions have been weakened considerably during the last few years.  The charities have responded positively to help support and suatain the biomedical research base in the UK.  It will be noted that over 30% of the member charities have disbursed monies in excess of their income during 1983.  This is an exceptional response ata a difficult time.’

1985: ‘….there can now be little doubt that the dual support system of medical research in the UK is very shaky and there would seem to be a shift in government priorities from the public to the voluntary sector in maintaining the research base in our universities and teaching hospitals…Indeed, it would seem that the only growing contribution to medical research in real terms is that provided by the voluntary sector…’

and 1986: ‘ There can be no excuse for Government to give less; rather we would hope that the evident interest and concern of the British communitywould be reflected in a more generous allocation of public funds to the MRC…’

The hardening of their tone matches the parsimonious treatment of science  during Margaret Thatcher’s first and second terms in office.  But how easily they could fit into the discourse of the last few months.

Tomorrow sees the Comprehensive Spending Review (CSR) announcement.  I suspect it will be a day largely about numbers big and small.  But assessing what it means in practical terms will be more difficult.  Don’t believe what the Government says about CSR being sorted, there’s a whole lot more wheeling and dealing to be done about how the Departments slice up the budgets.  Tomorrow will feel a little like being served a rather burnt creme brulee.  Every sense will tell us how unappetising it is as a dish but we won’t actually know until we have broken through the crust.  And we will need something bigger than a teaspoon to do that.

After tomorrow, and sooner rather than later, we will need to look beyond the numbers and understand the driving philosophy behind them if we are to lead science properly in the coming years.  A number of political commentators have already written that the deficit has been a gift to a Coalition Government intent on radically restructuring government and society.  I suspect that science and technology will not be left out of this and we might get some better idea of the philosphy when the Government publishes its growth paper in the next few months. 

Last night I stumbled across a paper by David Edgerton and Kirsty Hughes, and first published in 1989, entitled ‘ The poverty of science: A critical analysis of scientific and industrial policy under Mrs Thatcher.’   (1) They unpeel and help us understand that administration’s approach to science by making us see the relevance of the wider political contex, what they call a central policy agenda of ‘freeing private enterprise, of reducing intervention and of cuts in public expenditure’ – of re-shaping a slimmed down state to better serve industry.  It is reminiscent of what we are seeing today as Aditya Chakrabortty wrote in The Guardian yesterday

Their criticism of the science lobby at the time is that it failed to understand or challenge this.  They conclude with the line: ‘Flexibility, variety and competition are  needed in studies of science and technology policy, as well as in science itself.’

So, let’s crunch the numbers tomorrow but let us also be wary of painting by numbers in our challenge to government in the coming months and years.

(1) Public Administration Vol 67 Winter 419-433

A quick pass-by to alert you to the fact that we have a new briefing available on the impact on science of the proposed cap on non-EU migrants…and that we have published our response to the Ministry of Justice consultation on the current legislative framework for data protection.

On the former I believe that the House of Lords are due to debate the issue this Thursday 21st October.

Two down, one to go.  Here’s science related ‘matter’ at the Conservative Party Conference which starts in Birmingham tomorrow.

Birmingham University was of course the venue for the Science Minister, David Willett’s, first speech after taking office.  I am looking forward to being one of the hosts when he joins us for a roundtable breakfast on Wednesday.  I have been speculating whether he eats ‘clusters’ for breakfast or plain old corn flakes person.

In terms of the formal conference agenda items of interest include debates on ‘Big Society and People Power’ (cue a reminder to sign the Science is Vital peititon which has over 10,000 signatures now including support from the Wellcome Trust) on Sunday afternoon, ‘The Economy’ on Monday morning before lunch, debates on publci services and welfare onTuesday and the Prime Minister and Conservative Party leader, David Cameron, speaks on Wednesday afternoon.  You can see the agenda here.

My pick on the fringe….I shall be chairing the ‘Innovation as a cure’ meeting organised by Alzheimer’s Research Trust, Anthony Nolan and ABHI on Sunday evening at 5.45 or there is the Breakthrough Breast Cancer tea party starting at 5.30pm if you prefer, and another of our charities, Ovarian Cancer Action is looking at women’s health at 9.30.  The latter features Sarah Wollaston MP who is on the Health Select Committee and a GP.

You can kick off your Monday at 8am with Birmingham Science City which has a fringe entitled ‘Innovation and the Green Revolution.’  A bit later at 12.30pm why not decompress after George Osborne MP’s speech to conference by going to the British Chambers of Commerce debate.  I only mention it because the Financial Secretary, Stephen Timms MP, and Shadow Business Minister, Will-Butler-Adams MP, will be speaking.  Surely after hearing from this trio we might be able piece together a narrative for economic growth?

But I am sure most of you would prefer to hear David Willetts speak at the NESTA fringe which is taking place at the same time (12.30pm) on the subject of ‘Made in Britain: Building a 21st century economy.’  Either that or hearing Earl Howe, the Department of Health Minister responsible for medical and health research, speak at the ‘Research to the rescue’ fringe at 12.45pm hosted by BHF, Diabetes UK and the Stroke Association.

The Guardian’s engaging Michael White chairs the Health Hotel debate on Monday evening (19.30) and Health Secretary Andrew Lansley MP is speaking at the Health Hotel reception afterwards (which is invitation only sadly, what happened to the days when you could walk in to these things).

The 1994 Group and others hold a lunchtime debate on the future of higher education at 12.30pm on Tuesday and so are Reform with Universities UK at 1.00pm with David Willetts MP invited.  This one is called ‘Building the Future: Higher education and economic growth.’  [nb: one of the perils of conferences is the fact that many similarly-themed fringe meetings clash but I find you can run from one to the other if you are quick on your feet).

Also of interest on Tuesday lunchtime is the Asthma UK, Novartis Pharmaceuticals UK Ltd and Smith Institute fringe: ‘Can Health Cuts Be Good For You?’ Andrew Lansley is down to speak at this one which starts at 1.00pm. 

The Royal Society takes its ‘Scientific Century’ debate to conference on Tuesday evening at 7.30pm with David Willetts MP, Paul Wellings (Chair of the 1994 Group) and Brian Cox.  The Chemical Industries Association pop up this week with their own event at 7.45pm looking at ‘Science Education: The next deficit’ which looks more like a reception but I might be wrong.

And that’s it….a much busier conference than the other two as you might expect.  I look forward to seeing you there.

I think it was Simon Carr in the Independent who said that Ed Milliband opened his arms at the beginning of his speech as if welcoming the assembled earthlings to his world.

I certainly feel as though I have come back down to earth today.  An early train back to London from Manchester to a full email box and much, much more.  But I haven’t completely left the Labour Party conference behind.  I rather enjoyed Anna Lewcock’s piece on the Royal Society of Chemistry blog about Ed Milliband with such insights into the new Labour leader’s thoughts on science.

I also liked this thoughtful article from Fiona Fox at the Science Media Centre offerring a different perspective on the bonfire of the quangos issue.  I am supposed to be a guest blogger for exquisite life and I will do something soon but I am rather worried I shall appear like the late guest at a dinner party who appears just before pudding and spills the wine all over the table taking their seat.

I noticed that the Shadow Health Secretary, Andy Burnham MP, made a forceful speech today committing them to fighting the forthcoming NHS changes tooth and nail.  He referred a number of times to long-term care costs as a dementia tax.  200 miles south I was lucky to chair a session on effective collaboration at the UK Age Research Forum (UKARF) conference.  You can find the press release for the event here.  It focuses on the keynote by economist, George Magnus, about the social and economic implications of an ageing population and the need for a more co-ordinated  approach to dealing with the issues.

Makes all the talk of ‘new generation’ politics seem suddenly very uninclusive.

Dont forget to sign the Science is Vital petition – you can reach it by clicking on the ‘UK’ logo in the top left-hand corner.

There has been much to dwell upon since our workshop for member charities ‘Clinical research – working with NIHR’ a fortnight ago.

This is the fourth workshop on clinical research that AMRC has held in as many years.  Each has attracted more delegates than the one before – a fact indicative of the increasing interest among charities in funding clinical trials and studies.  The main difference now – compared to a decade ago – is that we have a system and infrastructure in place to better support their involvement – the National Institute for Health Research (NIHR).

Nonetheless the meeting emerged with some important issues and questions for the future.

Such has been the pace and scale of the changes that have happened under the auspices of NIHR that the ‘how to’ question regularly cropped up in conversation.  NIHR is necessarily a sum of its parts but it is n0t always clear how these parts fit together and relate to one another.  Our members are no different to other funders in needing a journey planner as well as a route planner to help guide them through the complexities.

So, the new National Office for Clinical Research Infrastructure (NOCRI) is an important initiative.  I am pleased that AMRC will be meeting with them in a few short weeks to discuss how they can improve engagement with medical research charities and provide a one-stop shop for guidance and advice.

Since I wrote ‘Not another article about partnership‘ on this site last August and expressed irritation with the system by which NIHR partnership status is awarded (or not) to funders, the Department for Health has instigated a review.  The questions on this topic at the workshop were, therefore, a timely reminder of the need for consistency and transparency in how such decisions are made.

I continue to be concerned that we do not do nearly enough to support research into rare disorders in the UK and this came out in the meeting.  While I can understand the interest in ‘scale’ – i.e. supporting those studies that are based around large patient populations – I sense a growing frustration among member charities who represent people and families coping with rare conditions.

Quite simply they feel that their agenda is being overlooked and I agree with them.  I have blogged before (‘Research of rare quality’ – 7th Sept 2009) on this topic and I hope that AMRC’s seminar in April for rare disorder charities will be an opportunity for this important group plus their colleagues in the sector to rally around some key research issues that we can press together, and press hard.

‘Who pays?’ – whether the charity funder or NHS – in supporting different aspects of supporting clinical has always been a difficult and intricate issue.

New guidance is expected shortly from the Department of Health.  It is intended to clarify existing rules and AMRC, together with a number of member charities, will be meeting with other funders and officials next week to understand better its implications; also to encourage an approach to its implementation and communication which reflects the fundamental contribution of charities to the future of clinical research in the UK.   If we are not to disincentivise some charity funding in this area it is important that this is got right and that potential issues are worked through sooner rather than later.

Yesterday you may have heard the excellent ‘Today‘ programme item about the publication of the MND Association’s manifesto ‘Make MND matter at the General Election.’  Take a look.  It will leave you in no doubt as to the rising sensitivies among charities about ‘bureaucracy and regulatory burdens’ standing in the way of appropriate use of charitable funds.

For, at the end of the day, our first responsibility must always be to our beneficiaries, donors and supporters.  It lies at the root of the sector’s interest in clinical research. It will be the test by which we must always determine our future  involvement.