One of the most frequently used mantras in NHS leadership is the importance of putting patients at the centre of care. Fundamentally, few of us would doubt the wisdom of this core assertion.
Why then do people so often feel disenfranchised when in the care system and why is this important precept seemingly taking so long to penetrate the rhetoric and emerge as common practice? In this article I suggest that many leaders, while fundamentally open to the spirit of genuinely involving experts by experience, do not engage themselves sufficiently in exploring the potential of developing a new relationship with those they serve.
The concept of ‘side by side’
On joining Mersey Care Foundation Trust almost four years ago, I recognised these behaviours in myself. As a provider of mental health, learning disabilities and addictions services in Liverpool, Sefton and Knowsley and as the provider of high secure services for the North West of England, Mersey Care FT has a very well-deserved reputation for people involvement and was innovating in this area long before I arrived.
In my early months I discovered a deep history of working in partnership with those we serve, ranging from involving people in interview panels, appraisals, in research, on board committees, on directorate teams; in fact, pretty much everywhere in terms of organisational behaviour. Despite all this, I was uneasy because some of those involved clearly wanted more empowerment.
I was also uneasy because we didn’t have the balance right between drawing comfort and feeling constructive discomfort as a result of what we heard from people.
A significant realisation came to me out of the blue. Having sat through what I thought was a very boring football match, my friend who had also been at the same game was raving about how exciting it had been. It turned out that we had been sitting at opposite ends of the stadium.
Most of the action had been at the end next to the stand he was sitting in. So while we had been watching the same game, our perspectives had been different; we sat face to face yet saw different things. Had we been sat side by side we both would have had a similar perspective on the game.
The significance of this paradigm shift became clear to me shortly afterwards when listening to a remarkable service user talk about her experience of being physically restrained during an inpatient stay. Up to that point, like many people I had considered restraint as a procedure in which the ends broadly justified the means, with patient protection being prioritised by paradoxically putting them in danger.
In a face to face relationship this is the sort of decision that can be rationalised, officialised by protocols and justified as a ”sad but inevitable aspect of mental health practice”. What I heard challenged that view to the core.
This patient, who throughout her childhood had been sexually and physically abused, told a crowded room of professionals that when she was restrained she sees her hands being held down as not those of her adult self but as those of her six-year-old self as she struggled with her abusers.
For me the relationship at that moment migrated from face-to-face to side-by-side. A view that can only emerge from and be shared by having lived experience.
I realised at that moment that we often “listen” and “engage” but there are limits to our ability to really change the service without the paradigm shift of seeing things as patients see them.
Why is this important to the NHS?
A side by side relationship with experts by experience is an atomic moment. By that, I mean it is a moment that cannot be forgotten and once the meaning has emerged it cannot be put back, obscured or denied. It is at once awesomely powerful, yet equivalently destructive and the equilibrium between both states requires skilled and expert handling.
Taking this approach challenges the assumptions that we make about why we do what we do in the NHS. Those working in the NHS know that just keeping the services going is challenging in the current climate, and fundamentally rethinking why we do what we do may seem like a step too far to some.
But if we continue to engage and listen without really understanding, we run the risk of continuing to rationalise poor decisions, miss opportunities to improve our services, and stop doing things that are not adding or are destroying value from the patient’s perspective.
Consider the impact of taking a side by side approach with professionals previously trained to consider restraint as part and parcel of providing care to people in psychological distress, but through the eyes of the person this action can trigger and exacerbate their distress. Without a supportive context, challenging this practice was potentially disruptive.
But imagine too how, when handled right, taking a side by side approach can take us right to the heart of understanding why we provide care in the way that we do in the NHS. We decided that people in our care who present with challenging behaviour should be supported through methods other than physical and medication-led restraint.
Tools, techniques and approaches have been developed that help to de-escalate tensions when patients are distressed. The approach has proven success in reducing the inpatient use of restrictive practices, with more than a 50 per cent reduction in restraint on pilot in-patient sites in the first year of implementation and lowering absence rates amongst some teams where it has been implemented.
In the 24 months before this work started on pilot wards, 880 days of work were lost due to injury restraining patients. In the 24 months after, this number reduced to 25 days, with an accompanying saving of £1.5m. Thus, by taking a side by side approach, the trust has increased quality whilst safely reducing cost.
What are the benefits of taking this approach?
Seeing things from the service users’ perspective means we can better understand what we do for people that is of value to them, and what is not of value or destroys public value.
So, for example, as a result of seeing the power of co-production alongside experts by experience during the initial phase of our zero restraint programme, we are pursuing a zero suicide strategy in our organisation, because we know that suicides for people in our care undermines public trust in mental health organisations, and has a massive human cost for those in our care and for their families.
This is what those who are bereaved by suicide tell us. This desire to truly evolve the agenda for user and carer involvement is timely and in keeping with the current zeitgeist of greater transparency as a driver for service improvement and increased organisational responsiveness.
It is a helpful exercise for boards to ask where they are on the face-to-face/side-by-side spectrum. Many will utilise a model that exploits the face to face model and that is fine provided that it is a conscious decision intended to deliver information or feedback. But the shift to side-by-side is culturally profound in that it is characterised by the empowerment of users and carers, mainly as a source of influence powered by partnerships.
We still have a lot to do but are now more aware that we are not engaging people for the sake of it, but seeing our service from their perspective so that we can understand patient value differently. We must be brave enough to listen for understanding, not just to take action.
Joe Raﬀerty, chief executive, Mersey Care NHS Foundation Trust