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The Patient (Lived Experience) Leadership Newsletter

Welcome to the fourth edition of the newsletter.

Patient (Lived Experience) Leadership is about those affected by life-changing illness, injury or disability who want to influence change through being equal partners in decision-making.

Each newsletter seems to have more in it. Thanks to those who’ve contributed. We are all about news, views and resources about patient and public engagement, co-production, patient (lived experience) leadership and practice. In healthcare and beyond. In the UK and beyond.

This newsletter foregrounds work in the UK – primarily to do with mental health and harm. There’s a bit of research stuff thrown in, inclusion and diversity and a big dose of first-hand accounts from people with lived experience.

I’m planning the next one to be more internationally focused. Send me stuff!

David Gilbert, InHealth Associates Director

Editorial: Payments for Patient Leaders

I want first to share thoughts on payment for patient leaders: Many come to this work because they want to improve or transform engagement. Others, because they want to create meaningful, valued and supported opportunities for those with lived experience (or ‘patients/carers’) at all levels. I am increasingly fuelled by the latter – for me, coming from the mental health survivor movement, this is a rights-based issue. From this latter standpoint, it becomes critical to see patients and carers as increasingly part of the ‘workforce’. That can only happen if we get real about money.

Currently, NHS England policy is to pay ‘patients’ a maximum of £150 per day for ad-hoc involvement opportunities. Those in the system sometimes lazily then assume this is a good rate. Largely because they do the maths - £150/day = £150 x 365 days annual salary.

But the rule of thumb for a consultant (in good times!) is you only get paid work 150 days per year. Plus you cover own NI, tax and pension

So: Take my situation. I need to earn 60k minimum for my London-based family of four (none of whom earn). Sounds high? Well, I’ve lost many years through illness (my wife and I both have) and am now 60 years old. And will probably have to work ‘til I die like my dad did. I’ve to charge at least 60,000 / 150 = £400/day. That’s why someone like me or anyone who wants to turn this sort of work into a reliable workstream can’t afford to take a NHS ‘patient’ payment opportunity or build a portfolio career based upon it.

Hence: only people that can ‘afford’ to do it, will do it - those who stay under the threshold for benefits (who then must stay dependent) or the rich who can also afford not to take money at all if they don’t want to. Just like many traditional reps who can afford to volunteer. The payment policy does little then for enhancing equitable opportunities.

The above is why I want any review of NHS Payment Policy to start from a different point of view – in order to provide steps towards progression of meaningful opportunities, and for it not to become a convenient excuse for local orgs to have a glass ceiling.

Meanwhile, people like me can’t apply for ‘patient partner’ opportunities as we are classed as ‘patient’ (thus come under pay policy) not as consultant. At the same time, I watch as private sector consultants charge £1 - £2,000/day for other forms of expertise. Thus maintaining us as ‘serfs’. And with my forty years of experience in healthcare I see CEOs and NHS Directors earning at least double my salary. With lovely pensions, talking freely about when they can retire. Moreover, there will be times when we are ill (surprise) & unable to earn. For this reason (and for me because I now value my expertise) we should charge more than figure above - there is no safety net for us if not employed. But getting employed doing this work is a whole other story.

Mental Health and Harm and Safety

As ever, mental health seems to lead the way in the co-pro and lived experience stakes. Our good friend Tamar Jeynes has been battling for years to get formal recognition for people with lived experience and her latest campaign is yielding amazing results – this time for the formal union backing for the rights of those employed as lived experience practitioners. This is truly pioneering work.

Another article brings lived experience in two worlds together – Covid and mental health – hoorah! It includes a thoughtful section on the qualities and capabilities needed to forge a role in this field. Including this series of nuggets:

‘For some of us the service journey includes involuntary admission, forced medication, coercion and restraint. For many, there have been lessons about compliance and being a ‘good patient’… Lessons of passivity and agreement can sink in deeply… But on leaving services, there is no identified process of regaining and reclaiming that autonomy. Issues of power and feeling entitled to participate fully are at the heart of co-production. The fundamentally unequal power differentials between traditional mental health workers/researchers and people with lived experience underline the importance of the change agent function of lived experience work, i.e.: an ability and willingness to disagree with dominant views.’

An academic study calls for better patient and family engagement in healthcare adverse events while Bev Fitzsimons of the Point of Care Foundation urges services to listen better in her blog post about the shocking but unsurprising findings from the Ockendon Review on Maternity Safety.

More deeply: There seems a similarity between ‘trauma-informed’ care in mental health and ‘restorative justice’ and a particular connection that could be forged between ‘lived experience practice’ in both areas.

Joanne Hughes became involved in patient safety following the loss of her daughter Jasmine due to failures in her care in 2011. She subsequently set up Mothers Instinct to provide peer support to parents bereaved from medical error and a platform to share their children’s stories for learning, and has gone on to be a national campaigner for earlier detection of the deteriorating child, and better care of the avoidably harmed/bereaved. Joanne is co-author of an important article on restorative justice that concludes:

‘incident responses must be conceived within a relational as well as a regulatory framework, and that this—a restorative approach—has the potential to radically shift the focus, conduct and outcomes of investigative processes’

Here's another article on restorative justice, this time about its connection to regulation. It is long, heavy and comes from an expert in the regulatory field. Grab a coffee or beer for this one. No patients included, but Braithwaite has huge cred in the regulatory field and is worth reading.

Patient Leadership, Policy and Academia

NHS England has put out for consultation ‘Working in Partnership with People and Communities’. Do take the time to respond if you can. My own view, for what it’s worth is that it would be useful for it to include explicit reference to the emergence of ‘lived experience’ practice and patient leadership. Also to endorse, as NICE has, the role of Patient Directors – a joined up set of national agencies would be welcome IMO.

Shifting to the academic world: Let’s start with the bad news: An academic study that looked at ‘patient and public engagement strategy’ documents found them to be confusing and lacking theoretical sense: ‘People who could help, especially public contributors, may find it difficult to understand when, where and how their knowledge and experience could be best used’. It also ‘makes it difficult for those responsible for turning goals into meaningful involvement.’ Frustrating, yet unsurprising reading for those who’ve been trying to develop strategic approaches that actually work.

One of the requirements of the financially semi-autonomous Foundation Trusts (FTs) – hospital providers – in England is to have a ‘Board of Governors’ including representation from staff and communities. 20 years ago, this was supposed to make them more accountable. Instead, we now have two layers of oversight – that governing board and the hospital board (where executive and non-executive directors get on with the business). I’ve often felt this is a double buffer to true patient power. An academic study looks at the relationship between Foundation Trust (FT) governors and hospital boards. Given the centrality of these structures, it seems weird that: ‘there is currently no detailed investigation of interactions between these two groups’.

The study concludes: ‘while governors provided both a conscience and contribution to internal and external governance arrangements, the meta-regulatory role was largely symbolic and limited to compliance and legitimation of executive actions’ [emphasis added]. In other words, these structures have maintained the status quo and done little for accountability.

While academics have a dig at current engagement work, the work of ‘lived experience’ has gone mainstream. An article in The Spectator charts some (only some) of the philosophical underpinnings, yet cannot resist undermining the nascent movement:

‘The wording of this recent £50,000 per annum job advertisement for Head of Lived Experience at the mental health charity Mind even [emphasis added] transforms the term into a professional attribute.’

How very dare they, these ‘lived experience’ upstarts.

It goes on:

'Candidates for this role will have a personal direct experience of mental health problems with substantial experience of integrating this experience into your day-to-day work to inform your values, communications and approach to lived experience and community leadership. Here, 'lived experience', however traumatic, is touted as a form of career currency to put on your CV - just as you would a degree’.

Again, how very dare they think that living through years of suffering, processing it, and then trying to use that enormous expertise to change things, was equivalent to ‘real’ study.

Another academic article provides a more solid grounding for those interested in the theoretical underpinnings of co-production. But while it is heavy on the history, its generation of another complicated conceptual diagram as to what co-production is seems less convincing. Moreover its findings – based on a series of case studies that for me are isolated projects more than co-production at the serious end of power – feels lighter in weight. But worth a look for all you brainboxes out there.

Moving on: The BMJ continues to be an ally, having pioneered the role of Patient Editor many years ago, and with a fine tradition of advocating sensibly for patient-centredness from within the midst of the medical empire. This editorial from a recent edition contains useful links to further articles. One is by the indefatigable Tessa Richards on why and how healthcare needs to be democratised and another by Caitríona Cox and Zoë Fritz on outdated medical language that, in the authors’ view ‘casts doubt, belittles, or blames patients jeopardises the therapeutic relationship and is overdue for change’.

And here is Tessa again, writing from hard-won first-hand experience. She asks:

‘Will obtaining digital consent from patients in advance of undergoing procedures improve the quality of the consent process’.

Important stuff.

Inclusion and Diversity

It’s a relief then to turn to the grit. Intimately connected to patient leadership, as well as a ‘cross-cutting theme’ as they call it, we all need to be better at diversity and inclusion. Here’s a good and radical place to start. Ironically, being an academic book, the price of £25 is high, but the blurb is great: “The language of diversity becomes the institutional response to complaints of racism - it makes them “noise” which is cancelled out by the happier buzz of speaking about diversity”. Check it out here. How about asking if the publishers can make it more freely available?

A voice for change was coproduced with young adults who are part of the Young Changemakers project, an initiative created by Centre for Mental Health, UK Youth and The Diana Award. The aim was to ‘reimagine mental health services for young people from racialised communities’ (you can explore more about the project in this video). A voice for change reviews evidence about the mental health of young people from racialised communities in the UK and what would help to make a difference. It finds that young people from racialised communities do not trust mental health services, face higher levels of stigma and are at greater risk of coercion. It also highlights the vital need for systemic change to address stark inequalities and institutional racism in both the health and education systems.

Some toolkits now: Across the Atlantic, The Suicide Prevention Centre has produced a toolkit ‘to assist organizations and agencies leading suicide prevention programs in their communities with recruiting and engaging individuals with lived experience’. The UK National Institute for Health Research (NIHR) has a self-assessment tool to help organisations improve racial equality in research.

Patient Leadership and Research

My good friend, patient-citizen advocate and continuing inspiration, Carolyn Canfield has co-authored a fascinating article on ‘the pelvic exam as a bellwether for patient-centred care’. The authors write beautifully – this is not your usual academic style:

‘if absent (authentic patient-centred care and cultural competence) or poorly described in the pelvic exam procedure, then what are the chances of finding truly patient centred content in less challenging procedures?’

They also address wider issues of patient-centred training:

‘profound vulnerability associated with the pelvic exam invites teaching orientated to trauma-informed care, care for gender diverse patients and the integration of every implication of intersectionality’.

They go on to state:

‘patient led care would be taught as both a dialogic and relational skill … patient and provider learn from each other through humility and respect… guided by the patient-led approach’.

Wow. You can contact carolyn.canfield@ubc.ca for your own pdf copy.

The ever-generous Carolyn also says: ‘Bear in mind that this is a journal named Medical Education. Your readers might consider writing a letter to comment on this piece’s approach to what true "patient-centred care” might mean. Or use this commentary in their own work, to amplify the message of patient-led care. Here’s an opportunity to influence those who control curriculum, instruction and the learning environment that will mould tomorrow’s health professionals’.

I’m hoping that this newsletter will be available before 26th May, the date of a webinar about an evaluation co-produced with young people with care experience – even if this is a little late, there’ll be a recording of the webinar and video produced.

Two fascinating first-hand accounts of patient and public engagement in research – one by a patient researcher telling of why he became one, and another from a near-newbie ‘professional’ researcher working with patients and the public.

The NIHR is launching an ambitious programme to better involve patients and the public. Meanwhile, it’s useful to know that there is a European review about patient involvement in Health Technology Assessment going on.

I’ve missed this next event but it’s worth knowing about Jack Nunn’s work in the Southern Hemisphere around citizenship and science research. Check it out.

First-hand accounts

Emeralda Burke is a health researcher and patient advocate. In 2013, she moved from Ireland to Toronto, Canada, after completing a degree in medicinal chemistry. One year later, she was struck as a pedestrian by a stolen car and now lives with chronic pain. She quickly realized how prevalent, underfunded, and underserviced chronic pain can be in Canada. Emeralda shifted to pain research with a special interest in patient education, self-management, and program evaluation. Her advocacy work focuses on raising the public’s awareness of chronic pain, using her voice to illuminate gaps in health services. In this interview, she shares her experience with healthcare providers in the hopes of improving the healthcare system.

I’ve often pondered online communities for patient leadership and may try one more time. So, it was interesting to read this interview with Gillian Berry, a nurse, who has vast experience in that world, creating ‘open source’ platforms – both what works and what doesn’t. I may get in touch. And here’s a platform built by patients for patients! Yay. In the world of pain. Launches June 1st. Good luck to all who sail in this vehicle.

Another first-hand account of someone with lived experience battling for recognition comes from Sara Villa, first posted last year. And another. People popping up everywhere – this must be accompanied by meaningful, paid and supported opportunities everywhere.

So, look at this: The Modern Slavery and Human Rights Policy and Evidence Centre is looking to recruit someone with lived experience of modern slavery to lead on the development of the Centre’s engagement with people with lived experience. What a job! We want more like this.

About the work of patient leadership

Stuart Dodzo, a young activist, alerted me to the work of Nikki Adebiyi, a writer and advocate, and founder of Bounce Black that provides peer support for Black students and professionals navigating recovery from adversity while building careers.

I’ve found a few professional articles that might be useful for people’s self-development in this work. It’s OK to be quiet in meetings is pretty self-explanatory, while another proposes that we all become ‘questionologists’.

Being quiet, asking good questions, both in a patient leader’s necessary toolkit. But how to deal with the anger of others or dealing with one’s own? In a powerful series of tweets (a ‘thread’) James Titcombe, a long-time campaigner for safety in maternity services, explains how he has tackled unwarranted criticism and harassment from people about his work.

I found another series of Tweets about austerity by UK money expert and policy activist Martin Lewis illuminating for its sensibility about the boundaries of angry activism. He apologises for ‘tarring staff’ with his angry brush, then goes on to reframe his major points – there is learning here for all activists dealing with their own anger – anger and activism.

And then there’s storytelling. Nicky Palmer, a Bradford-based mental health activist and poet, coined the term ‘trauma performer’ in response to the oft-repeated demand for people with lived experience to be wheeled out for events to make people cry, or as Jocelyn Cornwell once famously put it ‘provide a compassion rush’. Nicky has now applied for the phrase ‘trauma performer’ to be recognised in the Oxford English Dictionary – go Nicky!

Conferences and events – that reminds me. Thanks Nicola Kingston to alerting me to this study about how ‘even small changes to the organisational design of conferences could have a big impact on women's inclusion…’ – lots of generalisable learning there.

InHealth Associates News

Having left the role of Patient Director at Sussex MSK, at InHealth Associates we’ve been trying to share the learning about embedding patient leadership with others. We’ve several projects on the go – get in touch if you want to know more or might want to work with us:

• Leicestershire Partnership Trust – developing opportunities and support for Patient Partners in Improvement and Safety across three large directorates as well as a Patient (Lived Experience) Director in each.
  

• St Giles-Wise, Engaging People on Probation – we are partners in a three-year programme that supports all probation services in England and Wales to assess and then improve their engagement and insight work.
  

• Pinnacle Health, a primary care provider in New Zealand – how to embed lived experience work alongside Māori-Led Healthcare policy and practice, with a view to recruitment of the first Patient Director in the Southern Hemisphere.
  

• Norfolk and Waveney ICS – we are exploring the role of patient (lived experience) leadership in digital transformation and inclusion.
  

• Centre for Mental Health – David Gilbert has partnered in the ‘Year in our Lives’ creative writing initiative that has generated an anthology of writings about life during covid; he has also helped research into the future of counselling and psychotherapy with The Centre on behalf of the British Association of Counselling and Psychotherapy.
  

• Bethlem Gallery – DG continues to offer creative engagement programmes. As Writer In Residence at The Bethlem Gallery, he will be running two free courses on ‘Responding to Voices from The Asylum’ during the Summer – these are to respond to the experiences of people in the Victorian Asylums with a view to reframing one’s own mental health expertise and are also a beginner’s guide to poetic technique.
  

• We continue to offer our ‘Foundations in Patient (Lived Experience) Leadership, and will be running a new programme ‘Relational Skills for Patient Leadership’ in the Autumn.
  

• If you haven't already read it, check out ‘The Patient Revolution - how we can heal healthcare’ published by Jessica Kingsley Press. This provides all the background you need to understand the emergence of Patient (Lived Experience) Leadership

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