ABHI Membership

"To deliver a new normal that serves patients, we must grab this opportunity"

While it’s true that the NHS has coped with the challenge of COVID-19, we shouldn’t overlook how drastic the steps were that it took to do it. Patients were discharged from hospital and planned treatments cancelled on an enormous scale, in a way that would never normally be done. The ways in which patients access and use services were radically changed. All of it was done without patients having any say at all and, so far, with little effort to evaluate the impact on them.

Given the emergency, that was probably necessary and people were largely supportive.

But as the NHS looks ahead to what the “new normal” might be, if its recent experience has given it a taste for bold, clinically-led change, then the NHS needs to think again.

This could prove to be a very dangerous moment. Under the banner of embedding innovation and enabling the NHS to respond and adapt quickly – both laudable aims – any involvement by patients in decision-making could be eliminated.

Just as patients were largely absent as active participants in either care choices or service design in the Long Term Plan (LTP), we’ve just seen how shallow the roots of patient involvement in the NHS have always been: sweeping it aside wholesale to manage COVID-19 proved, perhaps, a little too easy.

To deliver a new normal that serves patients we must grab this opportunity strike out hard in the opposite direction: patient involvement must be massively enhanced compared to what it has traditionally been. We have a chance to bake patient involvement into new structures, processes and cultures within the NHS.

Think Local Act Personal’s “ladder of co-production” already articulates what the NHS should be aiming at. But it’s striking that the practices the NHS usually adopts – consultation at best, information or even coercion at worst – are in the middle and bottom half of the ladder respectively. Co-design and co-production, at the top of the ladder, should be the goals.

If, as it resets itself, the NHS isn’t to accidentally erase patient involvement, it needs to involve patients meaningfully from the outset. This means giving patients actual roles in the actual decision-making process. The old methods of a consultation here, a focus group there, and a panel with one or two patients can be, and often are, tokenistic. It’s not surprising the NHS apparently sees them as irritants to be dispensed with rather than valuable and essential parts of how it operates.

New ways are needed to bring patients into decision-making, and use their experiences as evidence. The Cabinet Office Policy Lab’s work on using “thick data” and ethnographic story-telling techniques is one example of how new methods might be developed.

As for what the NHS should be involving patients in, we believe the priorities of the LTP remain broadly sound. Integrated and properly resourced community services must finally be made a reality. But this can only be done if the NHS understands the problems patients face and solves them, not just the problems the system faces.

The ongoing uncertainty about new NHS legislation and the role of commissioning should be approached similarly. Meaningful roles for patients have been consistently absent from proposals to date. There is also a risk of accountability vanishing into a morass of complex decision-making arrangements.

The quiet dismantling of the internal market must not lead to an NHS dominated by clinicians and provider organisations, the chief flaw with how it originally emerged in 1948, than a service for the 21st century that treats patients as having agency in their own care and in the design of the NHS’ services.

Hopefully, instead, this unusual moment can be used to embed in the NHS – at long last – meaningful patient involvement. After all, patients were there for the NHS when we were expected to alter our behaviour to protect the service. Now, we’d like to be part of its reset.

Rachel Power, Chief Executive, The Patients Association