Excerpts from an opinion piece written in a personal capacity by David Gilbert, patient director, Sussex MSK Partnership (Central):
The story of the NHS can be recast as a narrative on power. Faced with the threat of a BMA strike, the founder of the NHS, Aneurin Bevan, conceded that GPs would retain the freedom to run their practices as small businesses. Consultants were given more money, and allowed to keep their private practices. In Bevan’s own words: “I stuffed their mouths with gold.”
The battle between policy makers and medical professionals and institutions centres on notions of “accountability” (how money is spent) and “quality” (how care is delivered). Both “sides”—managerial and medical—badge themselves as people’s sole advocates. Doctors still as advocates for patients and the government as advocates for citizens, despite deep changes in the healthcare context.
In effect, we have a “patient-centred” NHS being run by system leaders who are the managerial and clinical elite. It is akin to a “woman-centred” organisation being run by men.
It is time to challenge this binary debate as to who speaks for patients and citizens. We can speak for ourselves. Unfortunately patient and public engagement is undertaken usually via two main approaches—“feedback” or “representation.” The former buffers patients from power as feedback is narrowed to people’s experiences of services (rather than what matters more widely) and professionals deciding what can be done. The latter relies on “representatives” being slotted in to institutionally narrowly defined committees.
Thus, the jewels of wisdom and insight that people experiencing illness and the healthcare system are lost or undervalued. If the modern NHS is to survive, it requires new forms of collaborative leadership that model partnership.
There are good examples of where “patient leadership” is beginning to work and plenty of examples of “patient partnership” work in improvement. The BMJ has been ahead of the game in furthering the cause. There is an emerging movement of “patient leaders”—entrepreneurs, activists, quality improvement specialists, and digital pioneers set to revolutionise healthcare.
But within NHS citadels, these improvement efforts are not matched in terms of corporate practice, health economy decision making, or policy making power. Patients and the public have been excluded from senior decision making roles in structures created around new “models” of care design and delivery.
Our work at Sussex MSK Partnership (Central) provides a different way forward. As a patient director, I try to create spaces for people to talk and work together. For example, our group of patient and carer partners has established its value in improvement work. Now, we are piloting how partners can be part of multi-disciplinary team meetings across our clinical pathways and thus be embedded in decision-making in a way that mirrors my role as patient director at executive level. But there is still a long way to go, and all of the work that we are doing is happening at a time of huge operational pressures.
The NHS has changed in 70 years. It now has to change again to adapt to the rising patient and citizen movement. I don’t want to save the NHS if saving it means preserving the status quo. I don’t think Bevan—always for the people—would have wanted it that way.