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 https://www.inhealthassociates.co.uk 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.