Increased patient power will not be delivered by the bumptious

The rising demand for healthcare, highlighted by the NHS backlog, requires a patient-centred revolution. We need to embrace technology, educate patients, align clinicians, and involve patients in decision-making for a sustainable and proactive healthcare future, writes Vijay Luthra

The exponentially rising demand for healthcare that we see in the NHS is not solely a UK phenomenon. The demand for healthcare is unlikely to abate and with the elective backlog at a record 7.5 million (May 2023), it will take some effort to reduce it. It’s a salutary reminder that the 18-week treatment target (exacerbated by covid) has not been met since 2016. This is without mentioning the ever-increasing emergency and non-elective demands/pressures and the unreported backlog for medical outpatient follow-ups. I’m reminding us of these, not to point fingers – who doesn’t know how hard clinicians, managers, and support staff are consistently working – but to consider the mountain we have to climb?

As a patient with multiple chronic conditions, I have experienced first-hand the pressure the system is under. It’s apparent from the delay in appointments and referrals and the ever-increasing queues and numbers I see in outpatient clinics, that we are experiencing unprecedented levels of challenge. And as a patient, I’m worried about the increase in chronic disease that organisations like the Health Foundation and Kidney Research UK tell us is coming.

Finding a way out

As a lifelong renal patient but also an adviser who happens to work in health, I often ponder how we might find a way out of this seemingly intractable problem set. While many might argue that technology/digital is the answer, I have news for you?– the robots are not coming to save us! While AI, robotics, and other technology have huge potential to shift capacity and capability in the NHS, any vision we might have of a monumental shift in technology that can wipe away the elective backlog is a complete fallacy. There is no comprehensive evidence base to demonstrate how digital will alleviate the system-level problems we are dealing with.

The trend for “co-production” is well-meaning, but it often fails to access the deeper insight needed to optimise services

This is especially true when there is a need to address an extensive level of technical debt. Why should we trust new technology when a decade of government under-investment means the existing hardware and software are far from what is needed now, let alone for the future.

The old NHS adage of stepping away to make a cup of tea and chat to colleagues while your desktop takes 15 minutes to boot up might be amusing to those looking on, but it and similar frustrations with poor/underperforming technology have an impact?– in demoralised teams, as a barrier to productivity, and in a studied scepticism in relation to further technology transformation.

All too often it feels that “putting patients at the centre” is lip service, good practice is scarce, and it hasn’t been scaled. This is coupled with a sense that patient involvement isn’t really believed in – a big statement I know – but there is often no real clinical appetite or incentive to change that approach.

No More Professional Patients

Like the eponymous beer, we need to be reaching the parts that other engagement efforts don’t. The Department of Health and Social Care and NHS England need to embrace greater patient centricity and help integrated care systems implement a new approach.?

At its simplest and most common, merely printing leaflets and providing translators isn’t enough (although that’s a good start?– years ago). Nor do we need more participation theatre – the answer isn’t more focus groups. The trend for “co-production” is well-meaning, but it often fails to access the deeper insight needed to optimise services.

I also don’t think the answer is merely to appoint a bunch of professional patients to senior roles in the NHS either. All that is likely to lead to is an assault by the legions of the bumptious – the folks who hijack trust public meetings to talk about their latest hobby horse, which more often than not have little to do with addressing the things that matter and even less to do with addressing health inequalities.

Appointing more well-heeled and earnest middle-aged white guys might make you feel better and be seen as “doing something”, but the reality is it will do nothing to shift the reality of the parts of the NHS where the patient voice is most commonly shut out. We only need to look at the NHS Race and Health Observatory’s recent work on maternal health in Black, Asian and Minority Ethnic newborns to see that we aren’t including the right people in our discourse.

The answer?

I believe we need nothing less than a revolution – one where patients truly partner with their local health systems and their clinicians: a truly human-centred future for our NHS. What I think this looks like is four key enablers:

1. More use of technology to put information at patients, carers’ and clinicians’ fingertips to really enable patients to be able to understand how they are faring and to give a real boost to patient-initiated follow-up.
2. More education for individuals and carers on how to manage their health proactively to deal with chronic conditions in a way that maintains independence supports mental health and keeps them economically active.
3. Aligning clinicians and support staff to this agenda, which must naturally include the ceding of the need for control and acceptance of patients as having their own agency.
4. Implement the Hewitt report’s recommendations, but allocate more than the paltry 1 per cent she suggests to prevention.

I greatly admire those who work in the NHS?– clinician and non-clinician alike, but the reality is that there is little emphasis on enabling patients to be in control of their own care and a limited focus on whole-person care. Anyone, like me, who has more than one chronic condition to juggle will know how frustrating it can be to try and align multiple outpatient appointments, prescriptions, blood tests, etc.?All of this has a knock-on effect on the ability to be economically active and on mental health, among other factors.?

The shift we need is to a longer-term, patient-centred view. That’s easier said than done when operational pressures mean a constant tidal wave of demand which leaves little time for thinking about the longer term. The future needs multidisciplinary teams of clinicians, technologists, and, yes, patients. Patients need to be embedded in every facet of the NHS as advocates, partners, and participants?– on an equal footing with clinicians, managers, and support staff. Anything less will deprive us of the sustainable future we need.

Acknowledgement – I am grateful to my friend David Thorpe for his support in reviewing this piece. It is greatly improved because of his efforts.

This piece was originally published in Health Service Journal on 8th August 2023.