I was delighted to see that Billy Caldwell had been discharged from hospital yesterday. This, after the Home Office granted a 20-day licence for the cannabis oil that alleviates the seizures associated with his epilepsy.

The substance had been confiscated on his arrival in the UK from Canada with his mother, Charlotte, last week. Shortly after which he was admitted to hospital in a life-threatening condition following a series of seizures.  The outrage has been justified. The decision taken yesterday, the right one.

We can only hope the license is more than a temporary reprieve. That the Government has at last managed to untie the knot it has got itself into. Yesterday there seemed conflicting messages from within Whitehall as to what will happen next. But we do know that a committee of expert clinicians is to be set up to look at ‘individual cases’ and that this will be chaired by the Chief Medical Officer, Professor Dame Sally Davies.

Today’s media are full of opinion and analysis about cannabis oil. Some have chosen to open up the discussion even wider and look at the legalisation of cannabis.  Inevitably others are wading in. The unfolding debate is perhaps shrouding some deeper questions that Billy’s case raises, not about cannabis but about patient experience.

The first time Billy’s plight came to my attention was hearing Charlotte being interviewed on BBC Radio 4’s Today Programme. She was up against a very senior academic whose name escapes me I am afraid. The two-way interview concluded with the latter commenting that – and I paraphrase – ‘ we have to look at the evidence and can’t do things on the basis of anecdote.’

This turn of phrase was interesting to me. For me, anecdotes are stories often told in the third person and with some implied distance from the subject or event. Charlotte and Billy’s story was not an anecdote. They were relaying their lived – and current – experience. The professor’s statement seemed an unnecessary public dismissal. I thought at the time that overcoming this perception would be the biggest hurdle for the family.

Yet this frequent rubbishing – and it is rubbishing – of patient experience as being without value, of not being believable and of relegating it to the bottom of the ‘evidence’ pile is something that will not be new to many patients.  Not only does it put patients and their families at an immediate disadvantage in their own care, it also seems an entirely unambitious and inflexible way for health and research to look at the world: who knows what promising lines of inquiry might be raised by Billy’s experiences? Shouldn’t we be embracing it rather than decrying it?

The other interesting observation about how this whole episode has unfolded – apart from the usual accusations about bureaucracy and the shoddy state of our Home Office – is that it shows how inept the system is at responding to and managing patient expectations. Having spent decades creating a culture of expectation around medicines and treatments – cure versus care – health organisations, research institutions and regulators have thought little about what this might mean for them.  They respond in the only way they know – according to rules and regulations. Rather than operating to any discernible values or principles which might guide more effective and timely decision-making.

(As an aside I wonder whether we should be investing more money in exploring public expectations of health and research rather than the typical ‘public understanding’ agenda which has always been a loaded question in my mind)

The final point is that, were we to have such principles then ‘openness’ would surely be fundamental to how the system operated: transparency over how decisions are reached, who is responsible, what information is used to reach them? If patients are to be able to contest or challenge decisions then this sort of knowledge seems essential. Fighting the smoke and mirrors that are usually put in people’s way is exhausting if not insulting.

So the new expert committee must think about how it takes on board patient experience alongside the clinical evidence, how it will involve relevant parties and communicate its decisions. But it can only ever be a short-term fix for some fundamental issues that need addressing.

 

 

Hats off to the National Institute for Health Research (NIHR) Clinical Research Networks who published the latest data on patient experience in research this week. They have now been tracking patient views on participation for three years and with each report we gain a more informed picture of what matters to them. And with the sample now rising to nearly 5000 people, it’s become an extremely credible exercise.

The high positive ratings on overall experience (80+ %) are consistent with every survey I’ve seen in this field. But the report includes a neat synopsis of the recurrent themes in the data about what’s high on the priority list for patients including: motivation; research staff (constantly over-looked in public engagement efforts around health research); time; information; access issues. It will be interesting to see if and how these are highlighted in the PRIORITY Priority Setting Partnership looking at retention issues in trials.

What’s really clever about the report is that the authors – Mana Golsorkhi and Roger Steel – have then taken the findings and translated them into a series of recommendations for how issues might be addressed, charting these against different stages in the research pathway and then which organisations have responsibility for making it happen. In such a way they have shone a light on some of the weaker areas where further work is needed.

They also make some more pointed recommendations for each of the main issues identified above. I was taken with the proposal that each site (hospital, surgery etc). taking part in a clinical trial should carry out an ‘access audit’ which takes into account physical access, parking, time to travel etc. It’s a good idea. But i think it could be widened to a more general audit that is integral to assessing site feasibility.

Personally I would like to see all Clinical Trials Units and trial sites have Standard Operating Procedures (SOP) to cover public involvement and patient experience.

Great report. A good way to end the week.

I have written a fair bit about Academic Health Sciences Networks (AHSNs) in the past. Not always favourably I’ll admit. But that was then and this is now.

I am pleased to report that, as of May, the 15 AHSN have been re-licensed/re-designated/re-booted (select as necessary) for another five years with NHS Chief Executive, Simon Stevens, describing them as a catalyst for change in the innovation landscape.

They have also produced a rather nifty booklet entitled ‘Guide to the AHSN Network 2018: Our collective impact and future plans.’ It was launched at the NHS Confederation today and includes some great examples of innovation that AHSNs have had a role in developing. From medicines safety to cerebral palsy. I encourage you to take a look.

I was pleased to see Mike Hannay, Chair of the AHSN Network and managing director of the East Midlands AHSN, use his blog on the NHS Confederation website today to call out the important role of public involvement and engagement in this success to date. Mike Hannay describes this as one of the ‘untold stories’ and I would agree.

The role of public involvement and engagement in the AHSNs continues to be under-stated. Individually and collectively they have done some great work. This booklet ‘Exploring Patient and Public Involvement in a Digital Age’ is an exemplar.  Where there has been a lack of definition it is perhaps only natural given their stage of development. But with some careful thought they could be the cutting edge of public involvement in some key areas of weakness for our community such as innovation adoption.  The sorts of areas which would enhance the UK’s attractiveness on the global stage.

So the re-licensing gives them an opportunity to work with patients, carers and the public and think creatively and ambitiously about the future, to chart  in coherent terms the role that involvement and engagement will have. Key criteria for success will include: clarity of mission, strong leadership from top to bottom, appropriate resourcing including people, the setting of clear expectations with partners and a willingness to partner with patient organisations locally and nationally.

I understand that we will hear more about the AHSNs future programme and plans over the summer. Let’s hope the next chapter is an even better one.

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!

I AM RESEARCH

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.