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A microcosm of contradictions

Forgive the weary tone. I’m caught in the contradictions of Spring – the uprising of crocuses versus the down-treading of people in the Ukraine.

The emergence of early daylight, against the backdrop of a grinding few years of Trump, Brexit, Covid, Climate Change, and the rest…

This latest newsletter is a microcosm of those contradictions.

On the one hand, rhetorical declarations from well-meaning public agencies about the criticality of ‘patient voice’ set against the plethora of individual stories about people being routinely excluded. Further evidence – if such be needed – from worthy literary leadership journals about the importance of ‘outsider’ views, yet precious little about power shifts needed to enact that changing paradigm.

In a way, this has always been the case. Twenty years ago, we authored this report about the state of patient and public involvement in England and Wales – Involvement to Improvement from the first inspectorate, The Commission for Health Improvement (CHI) which was the predecessor of the predecessor of the predecessor of the Care Quality Commission, the UK inspectorate.

It reported back on more than 300 inspections and from its own research into the topic:

“The main findings are that PPI activity is on the rise. In addition, the NHS is, on the whole, improving in some aspects of PPI, such as providing information for patients and undertaking qualitative and quantitative exercises in getting feedback from patients. But it is not doing as much to ensure that patients, carers, service users and the public influence decision making.

At the same time, good practice is not being shared across organisations or being picked up at strategic level. Organisations are failing to integrate PPI activities with other efforts to improve services and are not making PPI central to core activities. involvement is not leading to improvement.

Finally, PPI is not yet having a major impact on policy and practice. This is despite a plethora of PPI initiatives. It is almost as if there is a brick wall between the activities going on and any changes on the ground that happen as a result”.

Sound familiar? I’ve since repeatedly written about why that was – still is – the case.

But still, the crocuses are up, and we need reasons to be cheerful. So, let us also point to the fact that I’ve just been asked by a primary and community care organisation in New Zealand, Pinnacle, to work with them to help recruit a Patient (Lived Experience) Director, alongside a Maori Director. Perhaps the seeds of a patient revolution are happening across the globe. Onwards…

Please do share the newsletter with others. We have more than 250 subscribers so far, which isn’t bad for something put together by me and Olly Cowan, my trusty website designer.

And do send us your news, views and resources for the next one, by which time we will be breathing in the contradictions of roses.

David Gilbert, InHealth Associates Director

Patient Leadership in Research

Funders, regulators and research organisations in the UK have come together, working with members of the public, to sign up to what they themselves call “a bold new shared commitment to improve public involvement in research”. The statement continues: “The NIHR and the Health Research Authority are working with a host of organisations to bring about changes that will drive up standards in health and social care research…The shared commitment aims to address the gaps identified in leadership and communication by bringing patients and public contributors and leaders in health and social care together to set out the importance of public involvement in all health and social care research. Read more here.

Patient-Consumer Leadership in Australia

In Australia, the patient-consumer movement is well-alive and kicking. In a longer article written especially for this newsletter (for which, thanks!), Rebecca Edwards, Jennie Parham and Leanne Wells outline ‘The Australian consumer leadership experience: As well as describing the infrastructure of ‘peak bodies’ that articulates the interests of health consumers, they see “a system on a journey of maturing the way in which it seeks to involve consumers in decision-making.

The article recognises patient leadership ‘as the next level of engagement, the deeper value and impact of incorporating the experience of consumers at all levels of the health system, policy decision-making and the opportunity for consumers to become leaders… While patient leadership is an emerging concept in the international experience, Australia has some way to go to incorporate this thinking into practice.

Some inroads can be seen in health services through the National Standards and the requirement to partner with patients, families and carers (consumers) in all levels of the organisation, particularly related to quality and safety and governance. However, there is limited systemic focus on building the capacity and expertise of consumers to serve as leaders, agents of change and service improvers despite this being recognised in the literature as an important co-creation role that they can play. The article points to some significant activities going on in Australia – we wish them all the very best! Read more here.

Patient Leadership and Wellbeing

Meanwhile, a nice example of co-production in the field of healthy weight has been sent to me by Clare Mullen at the Health Consumers Council in Western Australia. As Clare points out: This is a great example of lived experience leadership in our work on healthy weight. Strong consumer input has really shaped the development of www.thewellcollaborative.org.au - and a consumer led organisation (Health Consumers' Council) has now been funded to host the collaborative for 2 years.

Lived experience leadership in mental health

Lauren Jones, a mental health advocate and lived experience leader, whose presentation on her research we discussed last time, has sent the paper that describes her work: A rational case for mad researchers in social identity approaches to health: an autoethnography. Check it out.

Reimbursement

This thorny issue is raised once again in the context of a paper that describes the dynamics involved in co-producing psychiatric education. The authors conclude:

‘Paying mental health service user educators for their contributions is an ethical imperative for the authors. However, unless payment is accompanied by other forms of demonstrating respect, it aligns with organizational structures and practices, and it is connected to a larger goal of achieving social justice, the role of service users as legitimate knowers and educators and ultimately their impact on learners will be limited’.

Yup!

Patient Leadership in Diabetes

Much of the energy around patient leadership activities seem to focus in areas of quality improvement. Though we must shift that towards governance and leadership, this seems to be where the strong case for benefits can be found.

This for example is about developing opportunities for people with diabetes to engage in Improvement Champion activity: a practical guide for diabetes teams:

‘By sharing their unique lived experience of using diabetes services, Experts by Experience can provide health care professionals and services with a valuable opportunity to enhance their practice and significantly improve service delivery. Despite an established evidence base in other areas of health care, and emerging evidence that engaging in Expert by Experience activity can beneficially impact people living with diabetes, this important area of practice is still very much neglected in routine diabetes care and the number of people who are able to access this opportunity is small. This paper, written by a team of people who have either acted as, or supported people to become, Experts by Experience, offers practical guidance to diabetes teams to assist them in supporting individuals to engage in this powerful activity while maintaining psychological health and healthy boundaries’.

Patient Leadership and Long Covid

It has taken too long for the professional Covid research community to realise they need to work alongside people with lived experience.

At last, one academic has voiced this. Nisreen A. Alwan in Nature has authored a paper in Lessons from Long COVID: working with patients to design better research.

‘The perspectives of people with lived experience of any condition being researched must actively inform the research questions asked and the way in which we go about answering them. The experience of Long Covid gives a contemporary example of how working together with patients is integral to medical research’.

The paper concludes:

‘people with lived experience of chronic conditions from diverse backgrounds and characteristics must have a central role in conceptualizing and phrasing the research question, shaping the study design, and co-producing innovative ways to capture real-life experiences, as well as defining and labelling their conditions in a way that serves their wellbeing. Scientific research sets the medical and care agenda for patients with chronic illnesses. It also influences the wider social and economic agenda for people living with these conditions. The more socially and economically disadvantaged people are, the greater the potential influence on their lives. This is a huge responsibility that researchers are only able to fulfil with sharp awareness of the power structures involved in conducting research, with humility and with an openness to see things from different perspectives’

Patient Leadership in Canada

Jane Matthews, a patient partner in Canada, let us know about a useful ‘Patient Partner Handbook. She says:

“I was hunting for exemplars of Patient Partner programs’ best practices to help us develop our local program. This document was the clear winner. See what you think…”

Evaluating Patient Leadership

Meanwhile, Alies Maybe, of the Patient Advisor Network, has been part of a collaborative effort with Julia Abelson and others, to create what seems to be a very solid toolkit to evaluate patient engagement.

Co-production in Learning Disabilities

A new report highlights the importance of involving disabled people in planning and delivering services, but also the barriers they face when trying to share their lived experience. ‘The report, by the disabled people’s and service-user network Shaping Our Lives (SOL), says that those running involvement events do not always have the experience or knowledge to involve disabled people “meaningfully and accessibly… The Tickboxes and Tokenism report says the inclusive involvement of disabled people and members of other marginalised communities in such activity is “critical” in promoting “system and social change”.

The Rhetoric of Professional Leaders

So much in the posh leadership journals describes the qualities required for an authentic approach to leadership.

Here’s one article that you would imagine would lead professional leaders to beat down our door and gather us into the fold due to our ‘life-changing experiences’ It states: ‘our recent research has led us to conclude that one of the most reliable indicators and predictors of true leadership is an individual’s ability to find meaning in negative events and to learn from even the most trying circumstances. Put another way, the skills required to conquer adversity and emerge stronger and more committed than ever are the same ones that make for extraordinary leaders.’

Who knew? 😊

Another one for the collection: Marion Poetz et al discuss how the best ideas come from ‘outside your industry’:

‘There are some great examples in industry of creative solutions that arose out of analogous fields. More than a decade ago, 3M developed a breakthrough concept for preventing infections associated with surgery after getting input from a theatrical-makeup specialist who was knowledgeable about preventing facial skin infections. Other examples from our own industry experience include a company that needed a solution for tracking inventory and borrowed ideas from the sensors on miniature robot-soccer players, and an escalator company that borrowed a solution from the mining industry in figuring out how to install escalators in shopping malls’.

So our life-changing experiences plus our outsider knowledge is a valued resource, yes?

The Reality

Robert Joyce is a terrific blogger, entrepreneur and someone who has MS. If you read one thing in this newsletter, it’s his blog. Sign up. In a recent post, he describes the routine and everyday nature of exclusion

This is worth quoting at length:

‘Hearing these words (not being able to have virtual access to a forum on entrepreneurial idea from ‘patients’) was like being crushed. Once more, because of my illnesses and disabilities, I am being excluded. It is really difficult to listen to people who “pretend” to want to include patients, but to place obstacles in our way. Barriers we cannot climb over. My thought was they do not want actual patients, they want healthy and fit patients, or the people who care for us. Those of us who might have life-changing ideas will never be heard, because we are not allowed in the room.

I have written about this before. Our health systems require you to be healthy and strong so you can navigate them. Our social welfare systems require a level of knowledge reserved for those who have the capacity to understand their complexity. The systems of our society require health and fitness, not disability and illness. The organisations which claim they want to include us exclude us.

Several years ago, I travelled to attend a meeting in Brussels and I explained to the organisers I needed more time to travel, so I could recover from the journey. They employed me because of my illness, so I was expecting them to understand. However, I had to fight to get some accommodations. Not everything I needed. Pain and fatigue, for them, were not a valid reason to incur more cost. It wasn’t in their budget, which was designed for the healthy. That was nearly four years ago, well before the pandemic. Now we have video meetings, so attendance is unnecessary, but organisers are not willing, or don’t have the vision, to adapt to a truly hybrid system’.

InHealth Associates News

Having helped Tees, Eske and Wear Valley (TEWV) to appoint two Lived Experience Directors, I’m now working with Leicester Partnership FT, Norfolk and Waveney ICS, and Pinnacle in New Zealand with their plans to embed Patient (Lived Experience) Leadership.

Away from healthcare, we are working with St Giles-Wise Partnership on a national programme to support probation services in England and Wales to get better at working in partnership with people on probation – an extension of the work we do on lived experience leadership. Unsurprisingly, the principles are the same ‘valuing what people bring as jewels from the caves of suffering’ and ‘equalise power’.

We are also working with the Centre for Mental Health on two projects – one on the future of the counselling and therapy profession, for the British Association of Counselling and Psychotherapy (BACP) and another on Centre for Mental Health’s amazing ‘Year In Our Lives’ project. This gathered people’s creative testimony on living in times of Covid. My job, if you can call something as fun as this a ‘job’ is to provide some reflections of the 100 or so pieces of prose that people wrote.

Our Patient (lived experience) Leadership programmes continue to thrive. We’ve now run 13 of our ‘Foundation in Patient (Lived Experience) Leadership’ programmes in the UK, Canada and Australasia, for 140 people. The next one in the UK in May is now open for registration. We will also be running an adapted programme for the National Probation Service and have run them also in the field of gambling harm.

Check out what we do.

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