What’s Missing from the Darzi Report? The failure of patient and public involvement?

This is Blog no 79

The Independent Investigation into the National Health Service in England – to give it its full title, pulls no punches, and is a rather depressing read. Lord Darzi (who, politically, is far from ‘independent’) tries hard to be upbeat but the litany of failures he describes are so many and so widely acknowledged that few will disagree with his analysis.

It is authoritative and detailed, with 445 references mostly checkable in the monumental Technical Annex published at the same time. It draws on a ‘call for evidence’ to which 228 organisations responded and 80 bodies who took part in Expert Reference Groups. Under these circumstances, it seems rather churlish to suggest that he has not done justice to an important issue. This blog is not intended to be unfairly critical, but someone needs to say that patient and public involvement does not feature sufficiently prominently in Lord Darzi’s diagnosis – nor in his prescription for change.

In chronicling the decade-long journey into disrepair, he scatters blame in many directions. He cites the austerity of the Coalition Government and the disastrous Andrew Lansley reorganisation in that, “Experienced managers left meaning the NHS lost their skills, relationships and institutional memory.” He observes that, instead “New teams had to be formed, reporting to GPs, most of whom had no prior experience in NHS administrative structures and were independent contractors to the health service.” He blames the Treasury for making it virtually impossible to authorise capital spending leading to an £11bn maintenance backlog. And, very properly, he blames the COVID-19 pandemic, which the UK approached with a weakened Health service which we then made worse by re-organising public health right in the middle of the crisis.

What stands out, though is the failure of everyone to come to terms with the implications of the ageing population on our health and social care. By everyone, we must include Ministers, Politicians, NHS Managers, the Royal Colleges, the Media … and ourselves as members of the public.

The charge is that, collectively we have allowed the situation to arise when we have hobbled the NHS, failed to fix our social care problem and weakened our economy by causing a huge spike in those unable to work because of ill-health. We cannot just blame politicians if our public debate concludes that endless reorganising to limit the number of Managers and reduce current costs is more important than paying for better services in the first place and investing for future needs.

Which brings us to patient and public involvement. In fairness, the Report has a sub-section with the heading “The patient and public voice is not loud enough." and this says the right things, including an endorsement of co-production – “there is potential for people to be more involved in designing and developing how services work…”. He is, however, mostly concerned with the voice of the individual patient, and quotes a report by Demos for The Patients Association that found that 55 per cent of those polled had experienced a communication issue with the NHS in the last five years. Personally, I’m amazed the figure is so low!

As readers of Consultation GuRU will know, the NHS has a whole range of mechanisms for local accountability. We have Health and Wellbeing Boards, Overview and Scrutiny Committees, statutory requirements for a Healthwatch in each area and quasi-voluntary Patient Participation Groups  - PPGs in Primary care. This is all part of the institutional architecture, deliberately designed to act as checks and balances on the provision of local health and care services to counteract the top-down autocratic bureaucracy that is the NHS. In other words, they are there to provide bottom-up pressure for what local communities want.

That we have failed to increase the provision of mental health services, failed to fix regularly recurring service quality issues in areas such as maternity and failed to transfer resources into primary care – despite all these being avowed NHS policies – is not just a failure of the top-down management. It is also the failure of that bottom-up pressure.

Instead of local voices being the enthusiastic advocates of MORE and BETTER, they have been forced to defend against proposals for LESS and WORSE.

One might argue that this is the effect of the disastrous mistakes that Lord Darzi mentions, but I think it is also part of the cause. This is not to denigrate the efforts of thousands of well-motivated people – mostly volunteers. But to what extent have local Councillors, Healthwatch members and PPG activists harassed and lobbied their MPs in recent years, demanding innovative and better services? To what extent have local Managers pressed for new initiatives instead of telling senior NHS England Managers that although the public don’t like something, “we will manage the communications.” Instead, local campaigners have been vilified as later-day luddites, even when they have gone to the High Court and proved that they were not properly consulted.

This is only part of the picture. Yes of course, the NHS can force through service changes provided it ticks every procedural box of the Guidance, but there are no comparable obligations to engage on service deterioration. In fact, at times, no-one is conscious of them until it is too late. As Lord Darzi comments:

“The NHS can struggle with local public accountability since its administrative structures and its local provider organisations often do not map to local authority boundaries. Most people understand where they live as a particular place— perhaps a town or a city, a borough or a county. Yet despite this, the NHS still does not routinely report on access, quality nor spending according to the places where people live.”

Don’t blame the NHS Managers. Contrary to what the Daily Mail and other media tell us, the NHS is not over-managed, it is under-managed and has not had the time or space to develop this level of data. You can be assured, however that Tesco, MacDonalds and even the National Lottery all know and understand a local area’s needs and preferences rather better.

Where next?

Recognising that patient and public involvement should itself accept its part of the blame for the state we are in, it must seize the future opportunity to help put things right. Darzi is more analysis than prescription, but he proposes seven clear themes:

• Re-engage staff and re-empower patients.
• Lock in the shift of care closer to home by hardwiring financial flows.
• Simplify and innovate care delivery for a neighbourhood NHS
• Drive productivity in hospitals.
• Tilt towards technology
• Contribute to the nation’s prosperity.
• Reform to make the structure deliver

It is good to see a degree of public and stakeholder involvement (just) in the first theme, but essentially the challenge is for local communities to become engaged in championing those other themes. Being a clinician, Darzi seems convinced that many of the medics know what is needed. It’s time they collaborated and conspired with local voices to press their case rather than stand by hoping that NHS England will favour their local hospital with two-thirds of a new scanner sometime in the never-never.

We probably need a grassroots movement to restore the Health Service to what’s needed. If we can all emerge onto doorsteps and balconies to clap the gallant workforce of our once-venerated public service, it should not be beneath us to get down and dirty and demand an end to the malaise!

That poses a problem for those excellent people who already carry the burden of managing patient and public involvement. They may need to be re-oriented from being the management’s voice in the community to being the community’s voice within management. That’s not a comfortable role within the traditional top-down culture of the NHS.

But, as Darzi demonstrates, top-down is the main reason we have failed. We need to rebalance. More bottom-up please! Rachel Reeves and the Treasury will need to find the money. And the people will demand it is spent well.

Rhion H Jones LL.B