Act as if what you do makes a difference. It does.

William James, Psychologist (1842 – 1910)

Two things seem to distress patient activists most. Firstly, the resistance to change is frustrating and is redolent of previous experience, sometimes of harm. This can be re-traumatising. How to work authentically for change, utilising one’s passion, wisdom and insight from ‘lived experience’ and bring oneself wholly to the work, without becoming unwell is a huge challenge.

The second thing is more subtle I think. Many activists seem oddly expectant that things should change due to their own efforts. And become frustrated due to not witnessing immediate impact. This is mildly ego-centric, and under-estimates the sustained power of professional and institutional paternalism. We should hope, but not expect - hold the dream lightly so not become embittered.

This article deals with the second problem.

Activists must recognise that ‘Simple Isn’t Easy – it took us months to resolve the lack of chairs with arms in waiting rooms in our musculoskeletal service. Once patients who had mobility problems said that they needed arms to get in and out of chairs, I tried to fix it. But nobody had immediate operational responsibility as we hired out the clinics from the local Trust and had already spent refurbishment money. I was about to go to Ikea and buy them out of my own pocket, when we wangled the money from a middle manager’s budget.

It wasn’t that those in power didn’t care. That’s lazy and convenient to infer, keeps us within our own biases and maintains the familiar ‘us and them’ binary thinking that many want to overcome.

Staff were unaware until there were opportunities for people to have a say (and a patient director in post, who gave those voices a bit more clout), but the systems weren’t in place to rectify things. In fact, staff became as frustrated as patients – the issue became known as ‘ChairGate’.

We must also recognise that power is diffuse – activists sometimes seem to live in a bygone era where they imagine one person can change things with a flick of a switch. It’s seldom the case. This is one reason why it is tricky for a staff member to admit they don’t always have the influence to change stuff. Sometimes they’re struggling too.

One clinical leader admitted to a patient partner ‘you think I have power? Blimey. I’m as frustrated by what’s happening as you are… but it’s making me feel vulnerable when I say that and am so honest with you, ‘cos I think you’re going to go out there and whip up hate, rather than be able to help’. It was only after long and hard discussions that a joint plan was developed and the patient partner finally admitted ‘well, it was hard hearing that, made me more angry that the system is such crap. But thank you for your honesty. Let’s try and work this out together’.

Change is gradual. You just never know whether, when, how or where your efforts make a difference. You are but one stone making ripples. On leaving my role as Patient Director, one staff member who I’d never met said she’d changed how she dealt with patients because of our work on patient leadership: ‘I think more about what happens before and after I see them – why they might be late, or even not turn up. Maybe something’s going on in their life I have no idea about, and I try to find out’.

It’s taboo to say so, but it’s also a bit ego-centric to imagine we can change things on our own, to decry the system because our own efforts don’t seem to be making an impact. I’ve been guilty of this thinking. Maybe we should change how we do things, and/or adjust our own expectations.

If, as activists, we can ‘shoot for the stars and be happy with the moon’, recognise that we are but one small stone thrown into a large pond, then this might at least help with one aspect of our frustrations.

If we can acknowledge that change can take a long time, then that shouldn’t dampen our efforts but reinvigorate them. Rome – and healthcare – wasn’t (re)built in a day, or a decade. The answer is not to flop around in self-pity, take out our anger on the cat (or the chief exec) or give up. It’s the reverse. Roll up our sleeves.

I’m just off the phone to a chief exec of a large healthcare provider. She wants to recruit a Patient Director. I recently spoke with the Director of a major patient organisation. She wants to see Patient Directors in all healthcare organisations. I also just got a message from a voluntary sector leader who wants to see them in that sector too.

What do they have in common? Well, they all get it. They all see the next step for the Patient Revolution cannot happen unless people who have had life-changing illness, injury or disability are in true positions of power and are equal decision-makers alongside clinical and managerial directors.

They don’t have much truck with people who, based on erroneous assumptions about what Patient Directors could be, argue that the role is (a) unnecessary (b) unfeasible (c) tokenistic.

They see that the role comes as part of a systemic model of embedded engagement – see The Patient Leadership Triangle – one where people who have been through stuff, who want to change stuff also have a range of meaningful opportunities and serious investment in capacity building to influence change. This includes being able to be peer support workers, improvement advisers and governance partners, as well as Directors.

What else do those three interested and committed folk have in common? They work in other countries: New Zealand, Canada and Ireland.

I find it deeply disappointing (that’s NHS-speak for pissed off) that efforts to install Patient Directors in this country seem to have faltered. This is not just due to the fragility of engagement structures during Covid. Two Patient Director roles created a couple of years ago, have been abandoned. National agencies and most national Patient Organisations have not yet embraced the concept of Patient Leadership, let alone advocated for Patient Directors. You’ll need to ask why because I simply don’t know, despite asking.

What does a Patient Director do? This is an executive and salaried position, at the same level as the Clinical and Managerial Directors, helping to oversee the daily delivery of services and plan for the future. My role at The Sussex MSK Partnership (Central) includes:

This work has led to patients and patient partners having an impact on policy and practice, for example, prioritising our health equities plans, co-researching the impact of remote consultations during Covid, peer-led research on shared decision making, transforming admin systems, inputting into the design of pain management programmes, as well as the ongoing participation in training, and recruitment panels. The CQC rated our service as outstanding, partly due to the acknowledged contribution of our Patient Partners.

More than that, the relationships between staff and patient partners has led to more and more calls upon their time, and mine! Patient partners are developing their own corporate priorities now embedded in our work; and to patients facilitating staff wellbeing events during Covid – not least because staff have found their authenticity and leadership qualities of vulnerability inspiring, transgressive and personally liberating. Staff have more in common than they used to think with patients – and Covid in some ways helped that. A deeper bond based on our common humanity is being played out behind the scenes locally.

At a day to day level, Patient Partners are part of our clinical and operational teams helping to restore the service, for example on working groups looking at how to balance bringing back necessary face to face appointments with continuing to build on the benefit of virtual consultations; supporting the implementation of online booking systems, and gathering patient experience data post-Covid. Working together – clinical staff, admin staff and patients is becoming the norm.

Meanwhile, nationally, I haven’t given up on this country yet. As this article is being written, so I wait with bated breath for new NICE Guidance on Shared Decision Making. The draft that went out to consultation foregrounded the need for a Patient Director in all healthcare providers so as to help coordinate personalisation and SDM.

I am also working with one ICS, exploring how the Leadership Triangle model might be adapted there to create a ‘Patient Director for Digital Services’ and a team of ‘Patient Advisors on Digital Services’. And I am in touch with several Trusts who are intrigued by the model.

But I’m really not sure that people here are as ready for true innovation as they are for creating new organisational structures, logos and  acronyms. Once upon a time Simon Stevens argued for our talent to be recognised and valued, though he did use the word ‘harnessed’ which sounds a bit like we are horses. Now maybe he sees us as belonging in the knacker’s yard.

We are certainly knackered in other ways.

My book The Patient Revolution includes a chapter on the late great Michael Seres who couldn’t get his entrepreneurial ideas into the NHS and moved successfully to the States to do so. I’m wondering whether to do likewise. I hear Australia, Ireland and New Zealand are nice.

Find out more about Patient Leadership and the role of Patient Directors by coming to one of our regular series of training programmes.

David Gilbert was interviewed as part of a panel at the March 2021 Australia and New Zealand Consumer Health Forum. This 15 minute video explores the next steps toward making The Patient Revolution a reality across the globe - in particular it envisages widening the opportunities for Patient Leaders at all levels and suggests the notion of ‘career’ pathways in order to embed Patient Leadership.

View the interview  

I was a participant in the February 2021 iteration of the Patient Leadership Training Programme facilitated by David Gilbert and Kate James. This iteration of the course included 15 participants from 3 countries (England, Denmark, and Canada) and with diverse roles in health care (patients, family members, caregivers, and health professionals). I took a bit of time following its completion to sit back and reflect on this experience. At a time when I have often felt isolated, this was an opportunity for a zoom connection with patients, caregivers, and health providers internationally. The pandemic brought about both realities of isolation and connection. My choice to enrol in the programme provided an opportunity to learn and a way for me to positively frame my COVID-19 experience.

I was very excited to join what I nicknamed the February Friday gang, and was not disappointed in the experience. I was initially surprised at the pace and content of the sessions, assuming that they would follow a more formal format of presentation and discussion. Before joining, I read the e-version of David’s publication The Patient Leadership Triangle and easily found parts that resonated with me and confirmed many of my notions of what patient leadership entailed. Specifically, it highlighted the individual benefits that I have been fortunate to receive as a result of my volunteer work as a Patient Advisor here in Kingston Ontario Canada. While some of the theoretical material from the publication arose in the course, ideas and information arrived through the lenses of the participants rather than in a didactic delivery. This experience took courage, in my estimation, from everyone involved, as it relied on trust, honesty and a willingness to dive headlong into patient engagement issues. I truly enjoyed the diverse membership of the folks involved, along with the various styles of participation and theme-building that evolved. Two stories are provided to exemplify how this happened.

In retrospect, I can see how we developed over time into a group that was cohesive yet respected the distinct qualities of each person - what terrific modeling for patient-provider collaboration! The ‘checking-in’ process – an opportunity for each person to share a snapshot of their mindset or state of wellbeing/illness, at the beginning of each session, really took on a life of its own. It felt almost cursory at first, but by the end I was one of the people who likely benefitted most from this part of the process. When I listened to others, and then shared my own painful emotions and experiences at the beginning of our last session, I felt supported and understood despite offering vague details. This was a very unusual experience for me – considering that we were separated by geography, roles, health care systems, communication styles, and life circumstances. But the common denominator of being caring human beings, devoted to improving health experiences and outcomes while in the midst of a pandemic, served to bring unity and common purpose to our discussions. This was powerful in its effects for me.

If I had to pinpoint what principles I have arrived at relating to patient leadership, from personal/professional experience and with this course in mind, I would say:

Relationship building through:

I found David’s leadership to be kind, sensitive, flexible, and supportive. Clarifying when needed, curtailing when necessary, encouraging if helpful, and allowing silence, all helped to create an accepting and safe space for our discussion and learning. Kate was incredibly kind, honest, and considerate - helping with technical challenges while contributing her life experiences and wisdom to the discussion.    I appreciated that several group members reached out and offered to connect when I was struggling with health system related issues. I was left wishing that there would be an opportunity for the group to have an in-person time together across our three countries, as there were moments of connection that I would like to have fostered. I will keep my collection of email messages with the hope of returning to them in future to reconnect and continue learning. I hope to see these folks again in David’s Virtual Common Room!

In January this year (2021 for those of you in the future), I took part in a Patient Leadership Training Programme – created and lead by David Gilbert – a person who has been working in the field of Lived Experience roles and patient leadership for a fair while (I’ll be polite but he’s been working in patient leadership for longer than I have been alive so he knows his stuff!). He created InHealth Associates 10 years ago to train, consult, research and champion patient involvement and patient leadership. He’s written a cracking book too (The Patient Revolution – How We Can Heal The Healthcare System) which is well worth a read regardless of your background of involvement in healthcare. The experience gave me a lot of food for thought…so I did a little blog about it…

I work in the NHS, in a mental health and social care Trust as a Patient Ambassador in Medical Education and Research, I also wear several other hats including in service user feedback and engagement and experience. For many years my only identity was as a patient, I was constantly in and out of hospital, labelled as a “complex case” (aka we don’t know what to do/don’t have the resources to help you) and was unable to hold down a job for more than a couple of months as I would become too unwell. However, I’ve been in this role for over 2 years now, and grown in skills and confidence more than I ever have in any other period of my life. I still am a “patient”, very much so – and one whose care has not always been great (to put it politely) and whose life is very much affected every day by my mental illness.

During the 2 and a bit years I have been in my role I have only spent 2 months being able to live independently in the community – the rest of the time I’ve been in mental health units, homeless or sofa surfing – or for the past year, living in my own home with support workers who stay overnight and some of the day when I’m not out at work and help me be more independent. I’m fortunate to have the most amazing, understanding and supportive managers and colleagues, who – despite the complexities of managing someone like me with many adjustments that need to be made to accommodate me in the work place – have been unfailingly supportive of me, even through the tough times. To quote one of my managers “When we decided to employ someone with Lived Experience in the department, we didn’t quite expect the extent to which you would be living the experience”. A common misconception is that people using their Lived Experience in their role are largely “out the other side” and well on their way to the fabled “recovery”. I am very much slap-bang in the messy middle of my “journey”, I’m not fixed yet (is anybody ever?!) And nobody really knows how to fix me anyway. 

I’ve shied away from events with the term “Patient Leader” in the title until this point. It was probably nearly at the 2-year mark in my role when I finally stopped suffering from a crippling case of “imposter syndrome” and went down to a mild case. I hate to say that I was drawn into the NHS hierarchical way of thinking, and only started to consider the possibility that I could be a leader after I had completed some supervision training to begin to supervise service user volunteers working with us in our department. As a Band 4 role, I’m generally at the bottom of the pile in most of the teams I work with. So it was with some trepidation that I signed up for David’s Patient Leadership Programme – as I knew I fitted the patient bit…but did I have the right even to fit the leadership part?

I didn’t really know what to expect. So it was really helpful that a couple of weeks before the programme started, e-mails began coming round from the participants, introducing themselves, their background, their location (across the globe!) and a little behind why they were coming on this course.

Several things surprised me from this initial introduction. For starters, I had seen the name of a patient leader who works in my area who I know fairly well – so I naively presumed that everyone else would be from relatively nearby too – at least in this country! But people on the course were from as far away as Canada, Italy and Ireland.

Secondly, I had also naively presumed this was only in a mental health context – as my small brain can’t get my head around the idea of patient leaders in physical healthcare. I was wrong again – people came from a wide variety of backgrounds in physical and mental health care and many different roles and experiences in between.

Thirdly, I hadn’t put two and two together about the slightly unpleasant timing of 5-7pm on a Friday, and the global nature of the participants until the first session where I could see it was light outside for others. I think lockdown life must have got to my brain more than I thought it had and I hadn’t even considered that this had to be organised to suit people across a variety of time zones! 

Despite the exhausting timing in the day – I can only describe our first session as invigorating and energising. I’ll be honest, by the time 5pm on a Friday came round on a dark, damp January lockdown evening – the last thing I wanted to do was engage my brain or be even vaguely sociable. But the vibe in the (virtual) room was definitely contagious and I found hearing about others’ journeys, battles and experiences with being involved in lived experience roles inspiring and fascinating.

Even though we were a disparate bunch in almost every way, there was never struggle for stimulating discussion as we were all tied together by that strong bond of belief in the power of people’s experiences to influence change. I found that even though it sometimes felt like a lot of information at once, in the week following each session I would be going about my daily life processing and making sense of the discussions and debates we’d had. I started to see things in a slightly different (dare I say it, sometimes more critical) light.

Even though the course was only 4 weeks long and never having met most of the participants in real life, I felt like we’d all known each other a lot longer. I really appreciated the no-pressure atmosphere – you could take part as little or as much as you liked, verbally or using the chat function. We checked in at the beginning of every session (which is something I see in basically all patient/service user lead things but so rarely in sessions lead by others) which was really useful and there was a gentle understanding that if it was a tough day – just turning up was good enough. This made me determined to turn up even if time was pressed or the day had been hard.

I can sometimes feel quite lonely in my role – although we have a strong Lived Experience Practitioner (LXP) presence in my organisation which is really helpful and supportive, I am the only person working in the sort of role I do (many are Peer Support Workers) and in the departments I do. It can sometimes be really challenging to explain to people I work alongside that I belong to a “bigger being” than just me – just as a nurse may belong to a nursing union and have a certain agenda as a nurse that differs to that of an OT for an example – I have an agenda as part of a wider LXP movement to bring to my work as part of my role. Although I feel respected and valued in what I do, it can be hard to get your voice as an LXP heard and given equal weighting of that belonging to someone from a “registered profession”. I am an expert in what I do – just as others are experts in nursing, research, psychiatry etc. but it is harder for people to understand that this takes time and effort and commitment.

Being an LXP takes huge amounts of self-motivation and self-discipline that is simply un-relatable for people in professions which are more established and where the boundaries are clearer and there is an unwritten understanding that you have to study hard/have experience to understand how to work in that line of work. For some reason, many people seem to feel that the work we do as LXPs is easy, that anyone can do it and learn it. This is definitely not the case and I’m seeing this a lot recently particularly around the reality of co-production and what it entails. This course definitely helped me feel less isolated – as there were people from a huge variety of roles – some of which were more similar to my own, and the experiences and barriers people had faced were different and the same all at the same time!  

One of the ideas we discussed in the first session was that of “finding your gang”. This really resonated with me, and when I went away and thought about it for a while, I realised I did have a “gang” – a group of allies who understood the world the way I did – and that actually it was a lot bigger, more wide-spread and had some unexpected characters in it! This has been a huge source of strength to me in itself (even if those people aren’t aware they are “in my gang”) over the past couple of weeks which have been somewhat stormy in our organisation for various reasons.

I find myself about 5 weeks out from the end of the course, with a new found respect for myself as a practitioner. And I am even using that term more. I’ve learnt to look at things from different angles and in different lights – sometimes I don’t like what I see now – whereas before I might have been blindly satisfied with it. I’ve found myself with a lot more conflicting arguments and debates in my head about what is right, what is wrong, what is adequate and what is tokenistic. But I’ve also learnt that time, and self-control is the best way to approach these things that concern me. Leadership takes time. Service changes take time. I think considering patient leadership is something that takes huge amounts of patience (something I’ve not always been blessed with a lot of), dedication, determination and a very, very thick skin.

Leaders do not need to be at the top. They do not need years of training and qualifications. Leaders can lead from the bottom or from underneath, they can lead alongside, they can lead covertly. Sometimes they can even lead from a hospital bed.

This post was originally posted on Ellie's blog.

As another Patient Leadership Training Programme kicks off , I wanted to tackle one of the most common misconceptions about Patient Leadership – that it is elitist – an exclusive club that is inherently institutionalised (or could be) and that can blunt patient voice. 

Those who raise these objections tend not to have read much about it, or to misunderstand what it means. 

What It Means 

Patient Leadership is about ‘those affected by life-changing illness, injury or disability being able to influence change by being equal partners in decision making at all levels’. I believe anyone can do that – with the right help and support. 

It is about bringing our newly valued and polished jewels of wisdom and insight from the caves of suffering into the heart of citadels of power. 

More prosaically, it is about people who have been through stuff, who know stuff wanting to change stuff. In 35 years of this game, I have not met anyone, black or white, poor or rich, who would not be able to do do this stuff. If they want to. It is precisely the lack of opportunities and support available that makes patient and public engagement – as it is CURRENTLY undertaken – elitist. 

Patient Leadership rips apart (if you are feeling tetchy today) or builds upon (if you are feeling charitable) traditional engagement modes of (child-parent) feedback mechanisms and (adolescent-parent) representational models.

The Assumptions 

People who criticise Patient Leadership for being elitist make one or more of several erroneous assumptions. 

First they tend to look at the word ‘leadership’ through ancient eyes. They equate the word ‘leadership’ with formal hierarchical and traditional leadership. These days, leadership means far more than that – I am not a theorist, but the intention behind the concept is that it foregrounds collaborative leadership, even ‘servant leadership’ (do look that one up) and borrows more from Brene Brown than Donald Trump. It stresses being able to influence people and change through productive relationships. 

Some see the word ‘leadership’ in ‘patient leadership’ as necessitating followers, or having to ‘represent’ the views of others. I see it more as about leading change and that we are all leaders and all followers – every patient leader I have ever met is an inspiration. And the role of a good Patient Leader is to open up opportunities for others, and in an improvement or governance role to make sure there is widespread inclusion and diversity in any engagement or patient experience data gathering activity. I have long campaigned for the destruction of the notion of representation – that the role of a lay rep is a dangerous Catch 22.

People are also tending to see me as a Patient Director as the only manifestation of patient leadership. That a Patient Director is ‘The’ Patient Leader type role par excellence. That is a total misunderstanding of the concept and the role of a Patient Director - I am not there to represent myself or anyone else, but to broker space for equalising power in training, education, research, improvement and governance work and embedding cultures, systems and processes for patient leadership, good engagement and impactful patient experience work. 

Just as a Medical Director is not there – should not be there – to ‘represent’ his (sic) medics, rather to uphold the essence of high quality, safe, effective, evidence based clinical care – the principles of good treatment, so a Patient Director is not there as some sort of unionist only protecting the interests of one group or individuals over others – we are there for ‘patient-ism’ in all its manifestations, primarily by ensuring a sustainable focus on what matters to people who use or might use our services, as well as wider community interests. 

The model of patient leadership implies creating opportunities at all levels – from peer support, through to improvement and governance roles and should also be about  opening up professional roles to those with lived experience and encouraging and supporting them to apply, by making reasonable adjustments and more - perhaps putting ‘D’ for desirable or even ‘E’ for essential alongside roles like Transformation Manager, or Quality Improvement Coach - making it explicit that a life time living with a limiting condition is equivalent to a degree. 

People tend to assume that patient leadership leads to a narrowing of roles rather than the fact that it leads to the articulation of new ones and the infiltration of lived experience into old ones. 

Patient Leadership is only elitist in the sense that few roles and opportunities are available and investment in building capacity is missing - but this is an indication that it doesn’t really exist yet, rather than a reason for dismissing the concept. It is akin to saying we don’t have power in the system, cannot see it working yet, so let’s keep things the way they are.

More Deeply 

In fact, claiming that the notion is elitist says more about the elitist assumptions one makes - about the term itself and about the health care system - and perhaps dare I say it, about oneself. Maybe the mindsets need to shift?

To criticise the concept based on false assumptions or based on what you think it is (rather than critique something once you get to know it) denies the fact that anyone who has been through stuff knows stuff and could help change stuff. It denies the fact that all of us have the potential to speak truth to power, to engage in dialogue about what matters. It denies the potential of all of us to take charge and have more power.

Blunting Voice?

An alternative challenge is that by systemically embedding people ‘in’ the system, it can lead to blunting of independent voices. I have more sympathy for this argument. But my experience suggest the opposite - it is precisely the lack of power in the system that has led to terrible things at all levels. 

I don’t think the answer to that is by maintaining marginalisation. It is again like saying ‘We don’t have power – but please don’t let us have any so we can continue shouting about how we don’t have power’. Or double locking a child in her room and saying shout louder and I will try harder to hear your cries. That way more scandals lie. 

Patient Leadership by the way does not deny the existence, or need, for people outside the system - groups or activists – to be able to say what they think. The very reverse. But it does – or should – allow for channels of dialogue for difficult discussions to be had - at the heart of the decision making corridors and dark meeting halls. 

It should also lead to a deeper dissection of what we mean by ‘independence’. In psychological terms, we move from being ‘dependent’ to ‘independent’ to maturing as ‘interdependent’. Patient Leadership in this light can be seen as a maturation of patient voice. And I recognise we have a million miles to go before we equalise power in that way. La Lucha Continua. It does not either disallow or disavow ‘anger’ or justifiable ‘rage’. 

We should not let current system leaders ignore angry voices – we would not have had the Mid Staffs inquiry and a hundred others were it not for outrage. But that does not mean we shouldn’t try to re-balance the power inequities that led to the problems in the first place. 

Moreover, Patient Leadership is not an excuse for training patients in talking politely and using words like ‘concern’ ‘appropriate’ ‘unhelpful’ or to help them pack away passion and emotion. The need for ‘hygienic’ discussions about terrible things should be gone. The fear of honesty is more a healthcare system problem than one about patient voice. But patient leadership is about being able to have a proper dialogue that explores what went wrong (or right) in a way that keeps everyone at the table.

Critiques of patient leadership that rest on ‘voice being neutralised’ assume that people aren’t capable of of having those difficult discussions. I believe they are. 

It also assumes that we don’t have the wherewithal to withstand the seduction of office - well, that’s on us. That’s on us to reshape how improvement and governance takes place. That relies us on us to seize the language and discourse and say ‘let’s talk about what matters’ not just out there in focus groups – but here. Here where decisions are made about what to do about things. 

The Diaspora 

Of course there is a risk of co-option and adaptation of the terms to suit current power inequities - as they say ‘tell me about it’. I see programmes for patient leadership that are misguided and adapted for institutional needs. I’ve had ideas stolen so many times and have been shafted so many times you wouldn’t believe. 

But is that then a reason to give up? Or to ditch ideas? Isn’t that more an indication that we need to change things? Isn’t that more an illustration of how co—option of the ideas are happening precisely because we don’t have the power to shape them?

Another reason for this fundamental lack of change is that we don’t have an (Un?)Royal College of Patients - a collective of like-minded souls at a central level. The various charities and patient organisations are not on the whole led by patients - that is itself a serious indictment of the formal ‘patient and consumer movement’ to which the sector needs to respond.

But we are growing anyway informally. Maybe it’s better that way. Maybe the lack of a unified home allows for the concept to grow and infiltration of the system to happen in a million different ways. Perhaps the diffuse nature – our diasporic mind – serves the cause better? I don’t know. 

For me at the moment: It is not the failure of a concept for change that is the problem - it is the LACK of its presence in the system that is - the failure of us to be equal partners at all levels; the lack of systemic investment in building capacity or in creating the right influential roles or opening up roles to those with lived experience. 

Undermining Patient Leadership through making misguided assumptions is, to me is a bit like saying the Suffragette Movement was elite because they only wanted votes for posh women.

Challenge the concept, criticise it if you will - that will help hone the movement. But try not to criticise the concept without first trying to understand it. More deeply, try to be aware of the assumptions one is making about the phrase ‘Patient Leadership’ or the concepts and models arising from it. That in essence is one of the arts of being a good leader – being able to question assumptions.

The movement is fragile. Yes it is very amenable to being co-opted and destroyed at birth. But the charge of ‘elitism’ I fear may say more about those who make the charge than the concept itself. By maintaining that accusation falsely, based on outmoded assumptions, you may be helping bomb base camp before we reach the foothills. 

In the murky year that has been, what has made you proud? 

About a year ago, I was courted by an organisation intrigued by Patient Leadership. During several conversations, they became committed to securing the services of a Patient Director, alongside a more embedded model of Patient Leadership. 

I suggested an approach that would build on their commercial niche – providing nurse-led health coaching for people with long term conditions. This would entail, I proposed, ways of developing an online network of their patients, linking them to each other through informal peer support and training up some to become ‘professional’ health coaches. 

The model would then build a further progression route by which some of those health coaches would work with the nurses as part of service delivery, and then enter more strategic roles in improvement and governance.

This is the embedded model that could pave a way for patient leadership across health services – I was confident that this organisation was serious in its intent and would act ethically in order to develop the model. 

I am a sharer, perhaps naïve at times. But the alternative to sharing is to become passive, cynical and roll up in a ball and eventually die lonely. Something I would prefer not to do. So, I continue to expose myself. I will not apologise for that. 

This organisation decided, without pre-informing me, that they would put the ‘Patient Director’ role – a two-day a month post – out to open competition. They did not have to, being an independent sector organisation. The job description and person specification was entirely built on the suggestions I had offered. I went for the job without complaint – acknowledging their right to proper transparency. They then said that they had re-thought the role, that they would not appoint, and that the role would be developed by someone in-house.

In effect, from my perspective, they had stolen my ideas for their own competitive advantage and left me bereft. Perfectly within their rights of course. But the spirit in which they had undertaken each step now rankled – I looked back at how they had lured me at each step of the way to part with more and more of my wisdom and insight, gleaned from thirty years of struggle. 

I am not here going into the ins and outs of whether or not they behaved ethically or not. My belief is that they had not. But this blog is more about the emotional resonance of the process – something that many ‘patient leaders’ out there might recognise.

My aim here is to disentangle the personal reaction from the professional. Something that is not second nature to those of us who wear our heart on our sleeve; we can perhaps too easily default into a trauma-induced resurrection of more ‘natural’ tendencies – even replaying the role of ‘victim’ and thus further reinforcing our marginality and sense of otherness.

I hope that by doing this, I can offer something helpful to those who have suffered from an echoing heartlessness on the part of those in the system. 

Triggered by this situation reminding me of previous situations in my life – of my brain being sucked for free and then being spat out – I wrote a lengthy and emotional missive that outlined the hurt and immorality of their approach. My finger hovered over the ‘send’ button.

For once, I paused…

I desisted. I took myself off for a long day’s walk on the Brighton beach. I wrote poetry, phoned a couple of friends, drank copious amounts of cappuccino and ate far too many pastries. I re-established some priorities for 2021 – that I would finish my current manuscript of poetry, begin writing another book, and commit my patient leadership knowledge to a series of training videos to be produced in the new year. 

Then, after a week or so, I went back to the email. I took out all the references to my being hurt, avoiding any sense of self-pity. Which I often find hard.  There is no doubt, that whatever one’s ‘case’, by bleating about the unfairness, I risked pigeon-holing myself in an ancient narrative of the upset (and perhaps spoilt) ‘child’. There was no doubt in my mind that I was ‘right’, but I was held back from sending the note by a sense of how my actions would be perceived. This also lent credence to my decision not, this time, to vent on social media – I do not want any more to to risk being labelled as ‘adolescent’. ‘Oh there goes Gilbert again’ was the image that I conjured up.

And this time I wanted to behave like a grown up – modelling equality of power and responsibility – and point out at a professional level what had happened. That this behaviour of theirs was unworthy, unprincipled, unprofessional and certainly did not, ironically, model any patient leadership principles that I knew of. Certainly, if they had treated a health professional in this way – if the role for example had been for a ‘Clinical Director’, then I do not think they would have dared to behave in the same manner. I wanted to point some of this out without so much emotional angst.

So the note went out. I pointed out the facts of the case, listed what I had provided to them in good faith and free of charge. Told them how their process and decision-making was the antithesis of the model of leadership they espoused. And, crucially, attached an invoice for my services. This symbolises for me the value I put upon myself. 

I am now waiting for a response and will chase them when the standard 28 days of waiting is up. And I will continue to re-send the invoice. 

I then wrote another email to a friend: ‘I am feeling proud of myself. I did not lapse into the child. I paused, took stock, used my energy to refuel my primary purposes for next year, got some poetry out of it, took more careful aim, then behaved like someone who truly deserved to be respected – and properly valued for what I had done. I feel bloody good about myself’. 

And I still do. Whether or not they pay is beside the point. I have put a mark in the sand. And at the end of such a murky year, I am clear about where I stand.

I will try and do more of that in 2021. 

What are you proud of? What will you try do more of in 2021?

Thanks for reading.

What a good year for the roses
Many blooms still linger there

Elvis Costello

Covid decimated patient voice. Or so it seemed. The fragile architecture of patient and public engagement crumbled as centralised decision-making transformed delivery of health services. Many, including me, surmised that the cause had been put back by a decade. I was right… and wrong.

In Sussex MSK (Central) our co-production work did not merely survive, but has thrived. Why? 

We have an embedded engagement model – The Patient Leadership Triangle. It consists of a Patient Director, a pool of Patient and Carer Partners (PCPs) involved in improvement and governance and also a Patient and Carer Forum – a formal governance mechanism that oversees all ‘patient-centred’ work. 

Our musculoskeletal (MSK) service, like other community services, shifted quickly during Covid. Many staff were redeployed, and we ran a ‘skeleton’ service (pun acknowledged) for our patients. 

We also swiftly set up a ‘recovery programme’ that focused on how we might continue to run things operationally, but also improve what we offer. This included ramping up people’s ability to ‘self-refer’ to us, getting better at information we gather about patients to support shared decision making, improving our website and information provision and switching to being able to offer virtual appointments (by phone and video). 

Unlike many provider organisations, patients were included. As a Patient Director, working at executive level, I made sure Patient Partners were involved in the Recovery Programme groups. Patients were also involved in testing virtual systems and making sure they were accessible. 

It wasn’t perfect, of course. The times they are a’messy. And we sometimes had to struggle to ensure patient partners were not reduced to a feedback role and instead became part of decision-making and advisory groups.

But we were at the table, well-sighted on improvements and operational challenges. Patient partners forged new alliances with different leaders coming through the ranks. And I believe they helped, as well as challenged assumptions and shifted thoughts and functions. It seemed that staff and patients were working together.

As we emerged from the first lockdown period, patient partners also formed their own priorities for the future – resurrecting good patient feedback mechanisms, planning community engagement events to identify what matters to people with MSK conditions after Covid, and a more systematic approach to Diversity and Inclusion. 

As a Patient Director, I have been able to connect these three programmes with our two corporate priorities – First-Contact Practitioner (FCP) work and better metrics (PROMs and PREMs – outcome and experience measurement). 

I fear that where engagement has not been embedded like this, it will take longer to re-build the foundations. 

Meanwhile, something else has happened, beyond my MSK role – people have been getting in touch with me. Some have read the book (The Patient Revolution), some have heard about the MSK work. Others have attended my Patient Leadership Training Programmes. 

They have been united in their question: ‘How do we do patient and public engagement differently?’.

They have witnessed Covid decimating the engagement industry and see crisis as opportunity. They don’t want to build the same old structures – based on patient feedback and representation – those endeavours have well and truly failed. The NHS needs fresh ideas, about service delivery, improvement or co-production. Despite central inertia, at local level, good leaders spot the potential for Patient Leadership.

Now, as Director of InHealth Associates, I am no longer Billy No-Mates. Far from it. Do ring me if you want to join the emerging network of like-minded advocates for a different way of doing things.

For example: 

Across both my roles – as Patient Director of Sussex MSK (Central) and Director of InHealth Associates, it feels like we may emerge from Covid with some exemplars of good practice in the Patient Leadership field. These will be more than one-off projects, based on a more systematic understanding and acknowledgement of Patient Leaders – those who have been through stuff, who know stuff, who want to change stuff. We are also considering developing a network or community of practice for Patient Leadership – an idea that will not go away.

We bring jewels of wisdom and insight from the caves of suffering. Or, if you prefer, roses that bloom through troubled times. 

Good luck with it all.