|  | The Patient (Lived Experience) Leadership Newsletter | Welcome to the fifth 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. Or: Those who’ve been through stuff, who know stuff, who want to change stuff. It’s about the ‘jewels of insight and wisdom we bring from the caves of suffering’. 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 features a fair amount about the world of policy, and the vacuum there when it comes to patient (lived experience) leadership. But we liven things up a bit with some wonderful first-hand testimonies and insights into the culture of healthcare through that unique lens. And whilst we are light this time on mental health, we go bigger on digital. I want here to recommend the Shaping Lives Newsletter – subscribe to get much more on the world of mental health and learning disability lived experience and co-production. Our worlds align. | |  | | | | Editorial: What a difference a day makesMonday: A clinical ‘leader’ emails me with an ‘exciting opportunity’. They are leading a three-region NHSE (NHS England) funded AHSN (academic health science network) programme on developing a ‘community of practice' around medicines use. They want me to be a ‘central’ part of it, and they’ve read and ‘loved’ my book (I’m a sucker for flattery). We have a phone call. They want me to present at an ‘exciting’ event – my slot is for ten minutes at the end, after fifteen other ‘professional’ speakers. They also want me to be part of a ‘focus group’ of patients who will feed into their strategy. I ask them how much will they pay me? [silence ensues] They say no money has been set aside for involvement of patients. They say that year two will see the roll out of ‘exciting plans’ to involve patients in the development of materials aimed at the public ‘not to be stupid and waste their doctors and pharmacists time by asking for unnecessary medicines’ (I paraphrase here). I explain my work. I try to breathe slowly. I falter and think wtf. I then continue to tell them why their plans are a non-starter – for patients generally and for me – and why I won’t be doing anything for them. They ‘thank’ me for my ‘robust, honest’ feedback. I reach for the biscuits. Plain ones. I will never see them again. Their money will be wasted. Millions of it (my / your tax-money btw). I should be used to this by now, this sense of entitlement amongst the privileged elite of NHS leadership. But I never am. Tuesday: A service-user led organisation emails me with an ‘exciting opportunity’. They are leading the development of a national project to develop leadership capabilities for mental health peer support workers, of which there are five and half thousand now apparently. I say: do you have any money and how will this align with my own programmes on Patient (Lived Experience) Leadership Programmes? They are immediately alive to my concerns. We embark on conversations that are tricky but honest. I have to weigh up a lot of things – I’m a sharer, but I’ve also been ripped off multiple times. This results in me being paid – not a lot, but enough – to be on an advisory group, because they recognise that I am one of two people on the panel who will not be covered to attend by their employer; it also results in a verbal agreement that I will be one of the people who might deliver (paid) training. The conversation – built on developing a safe, trusting, honest about difficulties relationships – is an antidote to Monday’s soul-crushing discussion. I reach for another biscuit – with chocolate on it. | | | Let’s get the negative stuff out of the way: Policy makers continue, largely, to ignore patient (lived experience) leadership. Check out ‘Leadership for a collaborative and inclusive future’. It is strong on ‘inclusion and diversity’ in the narrow sense – i.e. as applies to staff and workforce. But there is no mention of patient or lived experience leadership. Is this due to there being no patient leaders on the twenty strong panel? Lack of engagement can equate to loss of trust and confidence in institutions. Thus, this report by the OECD about what drives trust in public institutions and government across 26 countries is interesting for those who are looking at those wider societal connections. At a more micro-level: Do policies for complaint handling support quality improvement? In a word: no. A study of English hospitals showed that ‘national policies and regulations can have adverse consequences within local practices, and partly function to undermine an improvement-focused approach to complaints. These include muddled routes for raising formal complaints, investigative procedures structured to scrutinise the ‘validity’ of complaints, futile data collection systems, and adverse incentives and workarounds resulting from bureaucratic performance targets’. The authors go on to propose patient involvement in complaints investigations’ as one of several recommendations. A report from the Nuffield Trust looks at ‘patient-initiated follow up’ – an idea touted as a possible remedy for post-Covid demand and long waiting lists –Simplistically, this is about not keeping people on the books if they don’t need to be, thus freeing up clinical and admin time. The authors state: ‘Based on the variable results and limited number of studies, it is not possible to say definitively whether PIFU is associated with a reduction in primary care use or hospital service use more widely. Nor is it known whether outpatient activity shifts to other areas of the health system…. Evidence of the impact of PIFU on health service costs is mixed and muddied. (it) has no effect on clinical outcomes, patient satisfaction and patient quality of life…’. This illustrates two issues perhaps (a) implementation of ‘evidence-lite’ practice (b) lack of true patient engagement in policy making that focuses on what matters. | | Digital As the digital revolution in healthcare, fuelled by Covid, rumbles on, what role do patient leaders have? The private sector is onto this to some extent. One pharma company has produced a guide to how engage with patients in the digital space. The reality in that sector is more circumscribed: A recent ‘Chief Patient Officer Summit’ focusing on ‘building transparent, integral relationships with patients, caregivers and advocates and cultivating a corporate culture dedicated to providing the best possible patient experience’ was criticised on social media for failing to include or involve patients. The multi-billion roll out of the ‘electronic patient record (EPR)’ across England has been done without significant engagement of patients and the public during procurement processes. No doubt there are significant gains for patients when hospitals are better able to share records, and thus tackle lack of coordination, communication and continuity for patients and carers. But impact on what matters for patients, via true engagement is sorely lacking. In Norfolk and Waveney ICB, work is beginning to look at ‘patient-centred roll out of the EPR’. Contact me for details. Meanwhile: An intriguing paper on ‘Stakeholder perceptions of the safety and assurance of artificial intelligence in healthcare’ states: ‘There is an increasing number of healthcare AI applications in development or already in use. However, the safety impact of using AI in healthcare is largely unknown’. After 26 interviews with stakeholders (including patients) they recommend a series of recommendations, including: ‘the impact of AI on the relationship between patients and their clinicians require greater consideration’. Patient engagement upstream please. | | | James Titcombe, the pioneering patient safety champion, has written a chapter in the practical book: Restorative Just Culture in Practice: Implementation and Evaluation: ‘In the wake of an incident, restorative practices ask who are impacted, what their needs are and whose obligation it is to meet those needs. Restorative practices aim to involve participants from the entire community in the resolution and repair of harms’. NHS England has published its new Patient Safety Incident Response Framework, to support the NHS Patient Safety Strategy and, hopefully, help learn from patient safety incidents. I’d be keen to hear from patient leaders as to whether it actually will help? | | | Dawn Richards, a stalwart of the Canadian Patient Leaders in research movement signposts us to a video on publishing academic papers by teams that include patient (& public) partners. She states: ‘It has info on writing & publishing a paper & tips to engage non-academics. I'm on the team that created it (includes a whole mix of folks)’. Dawn has also written a ‘thread’ (series of tweets) about ground rules when academics and patient partners work together. Bryn Robinson augments this with a thread that provides practical resources for those academics wanting to engage with patients as partners in research. This co-written article describes how researchers, patients and clinicians have worked together to enhance surgical patient safety to detect and prevent avoidable errors. Meanwhile, a Canadian hospital team found that when hospitals engage patient partners in designing care, there were ‘multiple benefits’. Dumas et al outline a theoretical model of engagement, labelled an ‘ecology of engagement’ that, they say: ‘can drive cooperative efforts with patients and communities on health, equity, resilience and sustainability’. To what extent do such models change things? Views welcome. I thought the title of this following paper a deliberate joke: Protocol for a scoping review to map patient engagement in scoping reviews But, finding out what matters to patients when finding out what’s been published on a topic (‘scoping’) is an optional after-thought. So, this paper might give some researchers a kick up the bum: ‘(this) will identify the ways in which patients and caregivers have been engaged in scoping reviews of health research… (to) make it easier for other researchers to engage patients and caregivers in scoping reviews’. Professionals and patients don’t agree on what’s most important to research. A study ‘Getting it wrong most of the time?’ looked at fifty papers in breast cancer and kidney disease. It explored how important patients and healthcare professionals consider the outcomes (especially the primary outcome – the most important) across these studies. The authors conclude: ‘Patients and healthcare professionals agreed with the choice of the primary outcome made by trial teams doing late-stage trials in breast cancer management and nephrology 28% of the time’. This has huge implications for policy and practice. | | | The Canadian Institutes of Health Research’s (CIHR) Institute of Musculoskeletal Health and Arthritis (IMHA) has developed a set of online, self-directed, free modules applicable to any research where patient partners are engaged. | | | This newsletter is primarily about direct ‘lived experience’, but the role of the Community and Voluntary Sector is worth touching upon. A recent paper on the CVS as ‘community businesses’ explores its role in tackling health disparities. Further, the connection between the CVS and ‘patient leadership’ is worth further exploration. Few ‘patient’ organisations are patient-led, though the user-led movement is well established in the mental health and learning disability field. Building on a community’s strengths, rather than its deficits (‘asset-based’ approach) has long been lauded as critical to improving how care is delivered. A recent study in mental health seeks to gather different people’s (‘stakeholder’) views on what helps and gets in the way of success. The Health Creation Network has put together sound arguments for community development approaches in health care along with some nice case studies. It should be noted that ‘patient leadership’ is predicated on a similar ‘asset-based’ approach to people’s ‘lived experience’ – that we bring ‘jewels of wisdom and insight from the caves of suffering’ alongside other capabilities from our lives. | | | Perhaps the innovative work comes from beyond healthcare? Simon Burall, who works for Involve shares a paper about running ‘deliberative engagement processes’ around use of data in the police force – these seek to engage with people as citizens within a complex and contested field. He and I continue to discuss the similarity and differences between ‘citizen’ led knowledge and that which comes via a ‘lived experience’ of life-change or via a health condition. One organisation that has pioneered lived experience roles and peer support away from healthcare is St Giles Trust. Tony Fiedler works as a Project Trainer there and co-ordinates the Norwich-based Peer Hub which trains local people who have experienced disadvantage to become qualified Peer Advisors. Here he describes his day at a local networking event. | | | Turning to the Southern Hemisphere for a bit of inspiration, a recent journal dedicated its pages to ‘Consumer Engagement and Leadership’ (as it is often dubbed there) – one article calls for a move ‘beyond engagement’ towards ‘consumer leadership’. While another by Leonie Short looks at how patient leadership could and should pan out in care of older people. It's also encouraging to see patient leadership emerging in Asia and being discussed at a major conference on ‘Patients as Partners for Health’. Thanks to Nikki Kay for alerting us to this one. | | | We still await the rush of senior level opportunities for ‘patient leaders’, despite NICE Guidance that endorses the role of a Patient Director in all healthcare organisations. We were pleased to see Julia Faulkner tweet about a senior level ‘lived experience’ role in the UK Kidney Network (applications now closed). And I’m aware of a few Trusts considering such roles – contact me if interested. I was further intrigued to learn that the (delayed) public inquiry into the UK’s Covid response will begin soon – any patient leaders part of the review panel? Or will people be restricted to presenting evidence? With the report written, as ever, by a professional-only panel? | | | Fellow Patient Leader, Stuart Dodzo, has written an expert personal account of what it is like to be a young person in the engagement world, particularly amongst Young People’s Advisory Groups (YPAG): ‘As I step into the 26 – 30 age bracket, there is little or no clarity on what happens…after spending years on a YPAG, it means losing contact with peers and opportunities for paid work’. Romany Gypsies and Irish Travellers have been badly affected by the COVID-19 pandemic. But as the pandemic fades from the headlines, many are still suffering with Long Covid. This short film, produced for the Derbyshire Gypsy Liaison Group and National Voices illustrates the issue. While talking Covid, you may want to read The Centre for Mental Health’s excellent anthology of people’s stories during covid and the accompanying reflective article about those narratives. ‘As a cancer patient, I felt dismissed by doctors. As a doctor, I am desperate for the system to change’ is the title of a newspaper article. It’s great that clinicians write so movingly about their patient experience. And I am waiting for the day when patients who have clinical experiences (i.e. delivering change) have their day in mainstream articles and on the bookshelves. This is also useful from a doc’s perspective – much is applicable to our world: Speaking truth to power: why leaders cannot hear what they need to hear. As is this: An insider perspective from Rufus May, who’s had significant mental health issues, explores how he integrates his ‘lived experience’ with a professional career in psychology and health management. Robert Joyce who lives with MS asks ‘if one voice can change anything?’ in his latest vlog. Let’s hope so Robert. Beyond healthcare again, this looks like an interesting book: The author states ‘Giving Back is a compilation of real-life events from a life lived in rural America and over a 30 year military career. It encapsulates the lessons of those times that have shaped Dave and helped him develop as a leader and mentor’. The perennial payment issue raises its head – The UK national institute for health research (NIHR) Has published its new guidance on this. Finally, there are a zillion ways to shut down our voices, as ‘patients’. One of the more fascinating is via the use of management-speak and thus culture. We are well-versed in acronym use. But less alert to the passive-aggressive use of words like ‘concern’, ‘(in)appropriate’ ‘disappointing’ and ‘challenge’. This article on ‘Tone Policing’ is a must-read article on how it all works | | | Our work at InHealth Associates | 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.
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.
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Creative Corner
This cartoon by Alex Norris is apt. It reminds me of trying to build a network of Patient Leaders, and the amount of people who say ‘we are all patients’. NB. If you believe that, then read this. |  | Eve Lauren has curated a magnificent truly co-produced exhibition at the (very special) Bethlem Gallery: ‘Meet Me Where I am (listening to insights into the mental health system)’ is: ‘an audio book of listening experiments co-created with Alex, Anon, Chloe Beale, Florence, Hattie, Helen, Ninette, Sam and Shan. A project researched, developed and led by Eve Loren. Illustrations by Merlin Evans’. I urge you to watch this extraordinary film documentary on the enchanting long-term friendship and meeting of minds between Archbishop Desmond Tutu and the Dalai Lama. I’m not crying, you are 😊 | | Thanks for reading. Please share this newsletter, and do encourage others to sign up, so they also get the free e-book. | | |
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