A paradigm shift towards empowerment is needed in the way we involve patients in their own care by seeing things from their perspective, writes Joe Rafferty

Joe Rafferty

Joe Rafferty

Joe Rafferty

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.

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

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.

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.

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.

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

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.

We must be brave enough to listen for understanding, not just to take action

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.

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 Foundation Trust