Page 2 of 127

A dear schoolfriend of mine, Sara, will be laid to rest today.

We found each other on Facebook three years ago after a 30 year hiatus. I enjoyed our mutual ‘likes’ of one another’s quirky musings, the various photographs of holidays and birthdays, and the occasional sharing of news about our respective families.  I had forgotten how funny she was. Our re-connection was a small happening. But it was one that brought great pleasure to me.

So I was touched that Sara’s husband included me in a message to friends and family describing her last days with her family. It was beautifully written. Warm, loving, peaceful. It sounded as though the hospice that Sara was cared in had been wonderful with both her and her family.

Naturally, I have thought about this a fair bit in the last ten days. These things do make you contemplative. Just for a while it feels as though the moorings that tie you to the shore have become a little bit looser. Plus there is much political debate about death and dying at the moment isn’t there?

If truth be told I don’t feel ready to step into that arena. Not today anyway. But I do believe in choice. That the respect and recognition of what might seem to you and I small things has great significance. And I know that many people are denied these life-affirming choices in their final months and weeks. Choices that would make life more comfortable for them and less distressing for their loved-ones. This is one of the many reports written on the matter by the excellent Marie Cure charity which is trying to change things in the favour of people with a terminal illness.

More research is desperately needed and I thought that you may be interested to read the results of this National Institute for Health Research (NIHR) study which came out today. It shows people in the North get the least amount of end-of-life hospice care (35 days) compared to people in the South (55 days).  The principal reason would seem to be that people are referred too late by GPs and other health professionals. Here’s the BBC report on the study.  And if you want to follow progress with another NIHR funded study in the field then please do follow the Optimum Hospice at Home project on Twitter at #opelstudy.

Elsewhere I am delighted that the Academy of Medical Sciences is tentatively turning its mind to the subject of dying.  It has announced that it will be running a public engagement project this year which will allow people to explore their attitudes to death and dying. It’s only just got started so if you want to know more or feel you have something to contribute, here’s a news piece about it with the Academy’s contact details. 

This morning I wondered whether it was appropriate or not for me to write a blog based around Sara’s untimely death. But then I remembered something she wrote on Facebook a little while ago. She wrote ‘I seem to remember you always were a bit of a firebrand.’ And I can see her now, as a young girl, raising her eyebrows and smiling as she said it. She would have expected no less of me.

I know, me(!), a firebrand. Would you believe it?

Farewell Sara.

It doesn’t matter where you are in the world patients and carers have the same questions about research.

This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting consumers (as they tend to be called here) – people with dementia and carers – and hearing their voices throughout the conference proceedings.

Yesterday I sat on a panel answering audience questions about the translation of research into practice. It’s a big issue in research generally. It’s a bugbear for patients, and carers – taxpayers – wherever I go. ‘Why don’t you do more to make sure that research findings are implemented and adopted?’ they ask. And well they might.

It just so happens that the National Institute for Health Research (NIHR) has announced an open competition to run what are being called ‘Applied Research Collaborations’ (NIHR ARCs) ‘for applied health and care research and to support implementation of research into practice, making tangible improvements for patients, the public and to health and care services.’ 

ARCs will follow on from where the current Collaborations for Applied Health Research and Care (CLAHRCs) leave off towards the end of 2019. They are good news from a public perspective ensuring a continued focus on implementation.

As I have  written before on this blog I have always been a big fan of the CLAHRCs and of the public involvement teams and communities that have coalesced around them. The public involvement work they have done since their inception as pilot organisations in 2008 has been of national if not international standing. Some of the innovations that have come out of them are exemplars of public involvement generally.

So I am delighted that the NIHR commitment to ARCs meants continuity of focus on the important theme of implementation. But what I am most pleased about is that the specification for the new the ARCs also embraces  the learning and priorities for patient and public involvement to emerge from the CLAHRC experience, the ‘Going the Extra Mile’ strategic review and NIHR wider strategy refresh. An increased focus on: diversity and inclusion; community-led research and new methods. As well as aligning things with the new PPI standards.

The following Q&A from the official documentation highlights the key differences between ARCs and CLAHRCs in terms of public involvement:

………The requirement to provide a strategy for public involvement,
engagement and participation remains unchanged from the NIHR
CLAHRC and other NIHR infrastructure schemes.

What’s different?
For NIHR ARCs, there is a greater emphasis on ‘community’ to ensure
that their plans reflect the diversity of the local population, foster
community-led approaches to research, as well as developing new
methods and approaches to public and community involvement,
engagement and participation. NIHR ARCs will also be expected to
consider the six national standards for public involvement in research,
which were published in 2018…….


These are important strategic signals which the public involvement community needs to embrace as opportunities to take things to a new level; as a chance to bring new thinking and approaches to bear upon some perennial issues.


So it looks like there’s going to be a new NHS Assembly.

It’s all part of a larger management shake-up being posited that will mean NHS England and the NHS Improvement agency working more closely together under a new NHS Executive Group. The aim is to improve planning, co-ordination and, at the end of the day, quality of care for the population.

I tend to have an allergic reaction to anything with ‘Assembly’ in its title. After all, didn’t we used to shuffle into ‘assembly’ at school? Aren’t we marshaled to our designated ‘assembly’ point during the office fire drill? And, as for the NHS Citizen’s Assembly, let’s not go there! If you are ever asked to be part of an ‘assembly’ you might just want to consider whether you are about to appear in democracy’s version of a ‘b’ film.

But if it does what it says it is going to do. If it brings together national and local leaders including patients from across the health and social care system to help co-design the next 10 years in health (note the golden ‘co-‘ prefix there) then I suppose we should not care what it is called.  By all accounts ‘NHS Assembly’ is just a working title anyway.

As you’d expect from me and this blog, I am going to underline the above and make the inevitable call for patients and carers to be part of the new ‘Assembly.’  Making this happen will not be easy. Particularly if its founders get themselves locked into delusional notions of that Assembly members need to be ‘representative.’ Form should follow function. The secret to the ‘Assembly’s’ success will be in how it works, and forms partnerships, with others – nationally and locally.

I am pleased to see that National Voices wrote a letter to the PM in April calling for patients and carers to be part of the wider development of the 10 year plan. And, as it happens, Jeremy Taylor, the chief executive of National Voices, has written some wise words on the subject of the National Assembly and the task ahead for it which appeared in last week’s HSJ (paywall). Their voice will undoubtedly be important in making this happen. We must all join this call as well.

Thinking about the closer working arrangements between the two organisations I hope they will be used as an opportunity to think about the public involvement and engagement principles, practices and model needed for the future. I have no doubt that colleagues from across the world of health and social care will be ready and willing to help with this thinking.

And finally, whatever does emerge, I hope that clinical, public health and social care research will be more central to how the new structures think and operate. We had hoped that this would be the case following the passage of the Health and Social Care Act 2012.  But we are still some distance from seeing research systematically integrated into the planning and provision of care and treatment.  In recent months there have been some really positive signs that this is now changing. It would be a crying shame if we were to lose this momentum once again in a collective obsession with organograms, systems and processes.

Plus, if we have learnt anything from the NHS70 celebrations it’s how much pride the British population take in its track record of innovation over the years (see the ABPI survey of a few weeks ago) and how much they want it to be part of the future – or should I say their NHS of the future.

A few weeks ago I was walking down Euston Road in London and bumped into a friend who I respect and admire very much. They have been part of the public involvement movement for years. We chatted for a while and they worried loudly what was happening in ‘PPI.’  We parted on good terms as ever.

Just a few hundred yards further on I bumped into another friend from public involvement whose opinion matters to me. They were in celebratory mood and wanted to share all the great things that had been happening in their neck of the woods. We also parted on good terms – in fact it was hard to get away.

This is a true story and one I recounted in a talk entitled ‘Chipping Away’ at the recent Brian Turley Patient and Carer Involvement awards hosted by the North West London Collaboration for Leadership in Applied Health Research and Care (CLAHRC). The winners can be found here.

The fact is that both my friends are right. There are good things happening. And then there are not such good things happening. Sometimes I have sleepless nights about the latter.  I know that I could spend more time pondering the former.

For instance – since we are in awards mode – here are the winners of the NIHR Clinical Research Networks (NIHR CRN), McPin, MQ Transforming Mental Health, Service User and Carer Involvement Awards.  And the innovative winner of the BMJ Perioperative Medicine and Anaesthesia Award that I helped to judge. It just so happens that on that walk down Euston Road I was on my way to the first meeting of the UK PPI Standards ‘Test Beds.’ Here’s one of those pioneers.

I called my talk ‘Chipping Away’ because I genuinely believe that is a big part of how we make change happen. People reference the testimony of the late Dame Tessa Jowell or announcements such as David Cameron’s ‘Dementia Challenge’ as if they were sudden, seismic changes in the landscape.  But it is more truthful to say that they were a tipping point at which the efforts of many over years and years became too strong to hold back.

Earlier this year I noticed that there was some criticism of mental awareness campaigns. On one level, I agreed with the critics. There seems to be a steady flow of such campaigns in mental health and there is a risk that people are becoming confused or, worse, wearisome of the message. I also empathise with the view that it is concerning if such campaigns are about drumming up demand for services if the resources are not there to provide the right response. But i disagree totally and utterly that awareness campaigns do not have an impact. It might be difficult to show a cause and effect in terms of changing attitudes but I am convinced they play an important role if allowed to develop and grow over a long period. They are very much part of this ‘chipping away.’

Today is another case in point. It is International Clinical Trials Day.  The day when the NIHR leads the call for more people to take part in research with its #IAmResearch campaign (formerly called ‘OK to Ask).’ Many #IAmResearch events have already taken place up and down the country. Others such as the energetic and inspiring #WhyWeDoResearch movement did a fantastic round of Tweetchats all last week (see the figures in the visual below) with almost 1500 participants and over 18 million impressions.  This week the NIHR will be hoping for national and local media interest in its latest public attitudes survey. The events and activities will continue until July.

whywedoresearch figures 2018.jpg_large

How things have grown since that very first ‘OK to Ask’ campaign six years ago? Today’s #IAmResearch Thunderclap which ends at noon will reach well over 2 million people, that’s double what it was last year. Similar campaigns are cropping up in other countries including the United States and Australia  with plenty of events in other nations – Ireland, Norway, Canada to name just a few that I know of.  Each year there is more local and regional coverage (hugely underrated in its importance) of what is happening. But the best aspect is that people up and down the UK are taking the #IAMResearch campaign message and making it their own – whether it be information stands, open days, talks or cake stalls!


But if we think it’s all over, it’s not yet. The number of people in clinical trials is increasing but there is much more to be done to make research part of people’s care and treatment.  Over 80% of people do not know or think that the NHS does not offer opportunities to take part in research.  Each year gives us an opportunity to build awareness and flip those figures. At the very least to ensure there is better information out there for people. So please keep chipping away.

Thanks for your support.

Macmillan Cancer Support has today drawn attention to the negative impact of ‘fighting talk’ on people living with cancer.

The charity says the findings of its latest survey show that people find it more difficult to talk honestly about their experiences because of the pressure they feel to be positive. One in four people said that they feel guilty if they don’t stay positive about their disease. The problem is that this can get in the way of them having conversations with relatives and health professionals about their end-of-life preferences.

Macmillan’s survey and report is long overdue .  For as long as I can remember, patients and families – coping with all manner of diseases and conditions not just cancer – have expressed disquiet about the language – and let’s be frank it’s often the language of war – ‘fight,’ ‘battle,’ etc. etc. – that is used and how it makes them feel and behave. I suspect it also causes friends and family to say and do things which feel equally unauthentic.

Similarly society has become dominated by messages about health care and medical research that continue to emphasise ‘cure’ over ‘care.’  Quantity versus quality of life is still the premium product if we are to believe the advertisers and fundraisers.  If you don’t believe me you may wish to check out these charity slogans I collected some time ago.

While I understand the imperatives behind this, the growing gap between people’s lived experience and the experience they are being told they should have is a cause for concern.  Perhaps it is what motivated the graffiti artist in Bromley who I noticed a few months ago had angrily scrawled ‘It’s all lies’ across just such a slogan on a billboard by a very well-known charity.

Let’s hope today’s report causes charities, health organisations, research funders and others to pause for a moment and think carefully about the language they are using in their fundraising and advertising.

A bit of ‘care’ would not go amiss.


If you haven’t read Elspeth Mathie (@elspeth_mathie) and colleagues’ excellent paper ‘Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study’  in Health Expectations then I highly recommend a read over the next few days.  

Their small but significant study  – which was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England – is based on a survey of, and interviews with, public contributors and researchers. It shines a spotlight on the whole issue of feedback; the lack of which has been a source of some irritation for the public involvement community for many years.

For me the most striking thing about the paper is not so much its headline figures reporting that, while receiving feedback is important to the vast majority of contributors (82%), 19% had received none at all. Shameful though this is.  Or the fact that when feedback does happen it can take many different forms. Equally we should not be surprised that there are many different ways of giving feedback and a number of factors that can get in its war – from time, to changes in personnel to mention just two.

No, for me, the interesting thing to emerge from the interviews conducted in the study is that while some researchers saw feedback as a matter of courtesy (true), public contributors viewed it as an opportunity to learn and improve. Implicit in this is a sense that perhaps some researchers still feel they ‘have to’ do ‘PPI’ rather than see it as a valuable part of their work.  Perhaps the good news is that the experience of giving and receiving feedback seems to improve as researchers and contributors got older and wiser.

Perhaps the other key message that I have taken away with me is a reminder of the need to think about feedback at the start, rather than at the end, of a research project. For by the end it is all too late.  People are exhausted and want to move on. Deciding with public contributors at the very beginning of the project what you want to feed back, why and how you are going to use the information gained is extremely important.

As highlighted in the rather brilliant new ‘Guidance for Researcher: Feedback’ published by Elspeth Mathie and the team at the Centre for Research in Public Health and Community Care with the support of the East of England NIHR Research Design Services (RDS) organisation which I also highly recommend.

One final note. A commitment to give feedback and learn from it is a sign of a healthy team culture. As with many other things to do with team culture the tone and style is set at the top. Feedback is therefore one of those things that we should hold Chief Investigators and Principal Investigators accountable for.

Have a great weekend.

Oh, and feedback on the blog is always welcome. Thanks.

The Association of the British Pharmaceutical Industry (ABPI) is shaping up for its annual conference later this week.

I see from the programme that the heavy-hitters of British science such as Sir Mark Walport from UK Research and Innovation (UKRI) will be out in force to give their perspective on the big picture.

As a presage to its conference the ABPI has published the results of a rather good YouGov survey of public attitudes to medical research and innovation.

The survey shows that the majority of people would give a blood sample, share their data or donate an organ for research (although I do think the numbers are lower than they should be). People are proud of the UK’s history of innovation and see the NHS as one of the main reasons for advances in care and treatment. People put a cure for cancer and then Alzheimer’s at the top of their wish list but are most worried about ‘poor diet.’

One of the really interesting sections is that in which people are asked to make trade-offs in future research:

The public are split on whether they would like to live beyond 100 years old if medical advances made it possible: 37 per cent chose either option (with the rest saying “don’t know”). While “a significant majority – 68 per cent to 12 per cent – believe that using medical technology to eliminate genetic disorders or diseases should be allowed, a bigger majority – 74 per cent to 10 per cent – believe it should not be allowed to make people “smarter, faster or stronger” or pick personal characteristics. 

It will be interesting to see if the debate at the ABPI conference focuses on this, the usual obsessions with boosting public support for data sharing, or issues around patient and carer access to research and innovation which is surely the most pressing.In echoes of the NIHR/HRA survey in March the YouGov poll highlights that people believe fellow citizens in other parts of the country are getting access to innovations that are not available to them. The public perception that there is a postcode lottery in innovation is a worry. Accurate or not it could serve to chip away at the public support so evident in the headline survey findings put out by the ABPI. How’s that saying go? ‘Accessing is believing’