Alison Cameron - Patient Leader
Alison brings her in-depth knowledge of co-production and co-design into her comprehensive piece for the spotlight on series.
Alison is a graduate in Russian who ran international development projects mainly in the countries most affected by the Chernobyl nuclear disaster in the former USSR. Her career was cut short when she was diagnosed with Post Traumatic Stress Disorder after her colleagues were killed in the course of her work. The consequences included homelessness, multiple admissions to hospital and identity loss.
She now advises NHS, housing and social care organisations on how to work in genuine co-production with citizens involving speaking at conferences, teaching, training, and writing. After many years of isolation, social media proved the catalyst to her starting to rebuild an active life and with that came here own ever-growing network and the ability to link to other networks. She is part of a group co-designing a new network for patients and carers involved in Quality Improvement to be named the Snow Community in memory of the late BMJ Patient Editor Rosamund Snow.
The following essay was written by Alison exclusively for the spotlight series.
Bridge Builders as network leaders
This piece provides some points on which to reflect if considering creating a network to which patients and carers are to be invited to be members, in order to achieve as level a playing field as possible when there are obvious power differentials which need to be considered.
Bridging the gap between “them” and “us”.
In the moment of crisis, the wise build bridges, the foolish build dams.
We are living in a very divisive and divided world. Little wonder we can feel safer in our respective silos. Keeping the perceived threats outside can give an illusion of control that in itself leads to an illusion of safety. And yet it is wasteful, and what and who falls through the cracks between the silos are losses that we cannot afford. I have been involved in trying to use my personal experiences using health, social care, and homelessness services to bring about positive change for some fifteen years. I am very familiar with the “them” and “us” thinking that dominates healthcare. There are various tribes of them and us but the ones with which I am most familiar are angry patients on one side, with defensive professionals on the other.
Social media has been great in terms of flattening hierarchies and shifting power but the down side is the them and us divide can end up being intensified as the standoff plays out publicly. Particularly in uncertain, often fear-laden times we tend subconsciously to gravitate towards people who are like us, yet a facet of a successful network must be the connection of people who would not normally meet. That place where our respective worlds meet is where the magic sits. But how can this happen in a world where increasingly we are divided into “them” who must be treated with suspicion, or “us” with whom we feel safe?
In theory we co-producers are brave enough to pitch our tent in the no-persons’ land between the factions which provides that space where we can venture out of the bunkers and over the patient/professional demarcation lines The trouble with defining co-production is that it is primarily a reframing of the traditional citizen recipient/service provider relationship – from parent/child to adult/adult. it is more of a mindset than a model hence the difficulty faced by those in a system that relies on boxes and spreadsheets and feel naked without a precise definition.
Filipe et all (2017) state that one way of understanding is to think of co-production as creating “experimental social spaces”. One way of going about the co-production of health care more meaningfully is to look at it as a dynamic, experimental, and reflective process sustained by different forms of engagement, interactions, and social relations. This may generate new forms of care other than health care ( inclusive relationships, solidarity), values beyond economic value ( equity, justice), and new insights and research practices that are relevant to different disciplines and practices (community participation, patient advocacy, collaborative research)”. Such a space can and should a mixture of face to face and digital. Face to face is often more productive in terms of developing a network, but not always practical in terms of time commitment and expense. In such a space, it may get messy and we might even be banned from using our job titles. We may not get things done as quickly as the system demands, but in a safe space we may dare to get things wrong and learn from that and as a result create more value.
Question to consider: What do you need to create the sort of creative social space needed for genuine co-production to flourish in your organisation?
One of the core values of co-production is commitment to peer support networks. Engaging networks of different kinds including the personal on an equal footing is an often-overlooked way of transferring knowledge. To create a level playing field is no mean feat however. Professionals have access to training and development galore. Networks, with notable exceptions such as the Q initiative and the Improvement Leadership Fellowship of CLAHRC North West London, often say that they are open to “all” but “all” in this case usually means holder of a formal job title, or the right badge. Take for example the HSJ Women Leaders’ Network. Despite the HSJ including many women patients and Leaders in their various awards, to date, this network is a closed shop to those without formal status in the system. This is rendering networks partially-sighted and as a result the risk missing a rich vein of insight and assets.
Question to consider: “when we talk about ‘the community’ who do we mean? Who is in, and perhaps more importantly, who is out? How are we going to ensure those who are seldom heard re included?
Levelling the playing field - Simply to decide to “do” co-production and parachute in some patients with no thought as to how in practice this “equality” will be achieved is not only wasteful, it can be potentially damaging. Thought and investment must be given to capacity building and development for patients/carer network members if the power imbalance is going to be in any way addressed. As “Patient Leaders” (yes, HSJ, many patients have leadership qualities in abundance) we are all at different stages in our development as patients and carers using our experience to push for positive change in health and care services. In the absence of the kinds of learning and development opportunities afforded professionals however, we can feel left to our own devices in terms of how to develop our own practice so we are as effective as we can be. It can be isolating work and it can carry with it a heavy emotional load since we are not just “doing a job”, we are often dealing with traumatic life changing nature of living with long term health condition or disability. Another point on which to reflect is the accusation that key roles are given to an exclusive group of “usual suspects”.
One way of countering this is to demonstrate commitment not only to personal development but to growing a community of active patient and carer partners who may be just setting out in the world of patient and public engagement. We hope to create just such a learning and supportive network for patients and carers involved in improvement work. An essential element of this will be peer coaching with several us “older hands” being trained as coaches to help grew even more of us. In order to keep it, we have to be able to give it away. This can be as hard for patients as it is for professionals. This new network will be called the Snow Community in name of the late BMJ Patient Editor Rosamund Snow. It is being supported, but not controlled by NHS Improvement and we are staying as true to the principles of Co-production as we can. This of course leads to the inevitable clash with the demands of the system, deadlines, and budgets, and in a way, it is in these moments of dissonance that the most creative thinking occurs.
Questions to consider: if I truly wish to patients/carers to be part of my network have I considered what support they may need in order to work in partnership? Have I also considered the level of readiness or otherwise of professional network members to share the space and the power with those patients?
Shared leadership - The leadership and direction of a diverse network needs to come from the membership, not from management. Distributed leadership is key and must involve patients and carers equally to reduce the risk of a feeling of being “done to” developing. We are most of us keenly aware of such thinking most of us having been on the receiving end of it. Letting go of control can feel and in fact often is messy. Outcomes may not be what was anticipated or indeed welcome.
Question to consider “How ready am I to relinquish the reigns of control over a project, event or even a meeting to someone who has no formal place in my organisation or even have a “real” job?
Bring on the bridge builders - So far so scary. As a healthcare professional I may be under pressure of deadlines and in possession of an ever-dwindling budget. Suddenly I am being challenged by patients to be less controlling. As a patient, I might have become ground down and cynical after years of attending events labelled “co-production” where the status quo has remained firmly in place and the locus of control with the amorphous mass of “them”. I might be wheeled out to be “inspirational” while all the time screaming internally “but I could do so much MORE if you would let me!” This is where the Bridge Builders come in.
My best thinking around this as usual came about from a very uncomfortable situation. I was delighted to be asked to work on a stand at the prestigious BMH/IHI Quality and Safety Forum alongside team members from the part of the NHS with which I was working as a Patient Leader. Shortly after arrival I was asked hastily to leave the stand as apparently did not have a formal NHS contract. Suddenly my “otherness” my “outsider” status was painfully clear. It felt extremely painful as I yearned to be a worker among workers, a friend among friend after such a long time in the wilderness. I had not worked due to illness for 17 years at this point. Trying to find “my” people, I sought out the Patient Panel and was not part of that either as I had not applied to join. I found myself in that no persons’ land not at all sure who or what I was. Had I now morphed into a professional and therefore lost my “patienthood” or was I simply a patient trying and failing to be seen as a professional? Once the discomfort subsided I reflected on the fact that, though very uncomfortable, it was exactly where I needed to be.
The professional/patient identity for some of us is fluid and necessarily so. There are times when I am accessing other skills perhaps from my former career in international development such as influencing and conflict management and there are other times when my personal experience as a patient is uppermost usually when required to have us all reminded exactly why we are doing what we are doing. So there needs to be people who are prepared to stand in the space between the bunkers, dodging the landmines, in order to broker connections between the two camps. There are surprisingly few of formal roles which recognise this important bridge-building function. One example is David Gilbert, Patient Director of Sussex MSK Partnership. He has considerable insight from his time as a user of mental health services and yet he is also a board-level professional with an understanding of the demands the system is currently facing. He is NOT a patient rep, he is way more than an “expert by experience” and indeed neither is he merely a Patient and Public Involvement lead. In one of his excellent blogs on this ground-breaking role he describes his position thus:
“The Patient Director ‘represents’ nobody, not even themselves. They are there to ensure that there is a culture and systems that embed “patient partnerships” in everyday business. We are there…to model the relationships at executive team level that should be shared throughout the culture of the organisation. We are there to broker opportunities for patients at all levels—at corporate and pathway governance level; in improvement work; in training; in induction; in values and vision work. And more…”
As for me, I have found it hard to progress beyond being the token patient brought in to make up numbers or the inspirational patient regurgitating her pain in public yet again. I did however spend two years working as a Transformation Fellow with NHS England Horizons Team writing, curating, devising, and facilitating co-produced events. It was the right role in the wrong organisation who had no systems in place to deal with an outsider inside – a cuckoo in the nest. Nevertheless, I developed an excellent and creative working partnership with Carol Read who herself wears multiple hats including innovator, writer, and nurse. We worked together on the co-produced day long virtual event the People’s Transformathon. We devolved content to a design group of patients, carers, front-line staff and the third sector including Housing which led to a creative, quirky, fun and above all useful day.
We found ourselves occupying that often uncomfortable space between patients/carers/citizens on one side and the demands of the system including dealing with leaders for whom the ceding of control to a group of “outsiders” was particularly challenging. That’s the thing about being a bridge. For people to meet in the middle the bridge must be strong enough to bear the weight. Therefore, it proved essential that there were two of us and we supported one another. It became less important whether we were labelled “patient” or “professional” but more that we could work collaboratively, and broker trusting relationships to enable both “sides” to meet half way. A strong network will have these bridge builders, people who are able work across traditional boundaries while not losing that which makes us different e.g. the insight that I might bring as a long-term patient, and the knowledge Carol has from her extensive career in the NHS. Both we found were equally necessary.
Bridges connect people that might not otherwise have the opportunity to do so. Bridge builders can dare to welcome the difficult conversations about what is possible and what it not. Bridge builders can be the connector between passion and practicalities. Question to consider: Who are the bridge builders in your network who will broker the relationships across boundaries that are needed for it to be a network rather than a club?
For individuals interested in what networks mean for them, the basic tenet is it is important to have a broad and diverse network. Make sure that you are open to the unexpected and focus on building relationships by helping others first. NESTA, The Art & Science of Network Weaving
References and further reading
Filipe A, Renedo A, Marston C (2017) The co-production of what? Knowledge, values, and social relations in health care. PLoS Biol 15(5): e2001403.https://doi.org/10.1371/journal. pbio.2001403
Examples of networks involving patients and carers.
Community pay it forward
Alison has recomended Sibylle Erdmann a patient advocate/leader for a future 'spotlight on' case study.
Twitter - @allyc375