Is Health too important to be left to clinicians alone?
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, are coming.
Finding a way out
As a lifelong renal patient but also an advisor 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.
This is especially true when there is a need to address an extensive level of technical debt. Why should we trust new technology after a decade of government under-investment? 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 about 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 scaled. This is coupled with a sense that patient involvement isn't really believed in and a big statement I know, but there is often no real clinical appetite or incentive to change. Like the eponymous beer, we need to be reaching the parts that other engagement doesn't. DHSC and NHSE need to embrace the need for greater patient centricity and help ICSs to implement a new approach.
At its simplest and most common, merely printing leaflets and providing translators isn't enough (although it was 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.
No More Professional Patients
I don't think the answer is merely to appoint a bunch of professional patients to senior roles in the NHS either. All this is likely to lead to is an assault by the legions of the bumptious - you've seen them already. They're 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 an NHS where the patient voice is often shut out. We only need to look at the NHS RHO'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.
So what do I suggest?
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:
More use of technology to put information at patient, carers’ and clinicians’ fingertips to enable patients to be able to understand how they are faring and to give a real boost to PIFU.
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.
Alignment from 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.
Implement the Hewitt report’s recommendations and allocate more than a paltry 1% 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 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. We need, for example - truly patient-centric Virtual Wards with care provided across an ICS via trus multi-disciplinary teams. The proliferation of virtual wards at the moment is very much focussed on acute out-of-hospital care only, step-down provision, rather than proactive and anticipatory care.
The shift we need is to a longer-term, patient-centred view, but it's easier for me to say that when operational pressures mean a constant tidal wave of demand there is no 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.
