Democratic Healthcare

The NHS and other public services need to be accountable to citizens and communities.

Closing the stable door: NHS users as members of democratic communities

Author: Gabriel Chanan

Recurrent hospital scandals reveal a lethal disconnection between the parts of the health service which treat us as individuals and those which treat us as communities. The great bulk of NHS money inevitably goes on individual treatments, some via GPs but most via hospitals, naturally with a large skew towards the elderly. A much smaller amount goes on ‘public health’, the collective area which focuses more on prevention than treatment.

More resources put into prevention would reduce the need for individual treatment, and there are signs that the Labour Party plans to take this on board. But the very success of modern medicine means, despite recent fallbacks, that many more people are living longer with long-term conditions that need repeated individualised treatment.

There is a striking absence of a community dimension once we are involved with one of the big health institutions, usually a hospital. As we go through the door, whether as a patient, a relative or a carer, we are instantly converted from being a member of a community (or several communities) into being solely an individual case. We are only too happy for our problem to be looked at individually with scientific accuracy but when something goes wrong we are isolated.

We rely crucially on the medical model of health: the social model is not an alternative but a complement. The question is how to balance them and make them interact. Channels for complaint and redress are slow and cumbersome, and one often hears of gagging orders on whistleblowers within NHS institutions. When scandals finally emerge into the light, as they did for example in the 1990s and 200os in Stafford Hospital, Furness General Hospital and Gosport War Memorial Hospital, the pattern is often similar: individual patients, carers or staff are disturbed about some failing such as the unexpected death of a relative who had been admitted for a routine treatment. They raise questions and are given unsatisfactory answers, only to discover, after months or years, that many other individuals experienced a similar problem in the same institution.

The sufferers eventually manage to get together and compare experiences, revealing a systemic problem, not just one or two anomalous cases. They raise it as an institutional matter. The complaint is forwarded to the governors, an internal inquiry is set in motion, then perhaps the Care Quality Commission is involved, and eventually a report is written identifying some systemic failure and saying that lessons will be learned and procedures will be changed. By this time years have gone by, more people have suffered unnecessarily and the senior staff have moved on.

It is often clear, but much too late, that without the painstaking persistence of relatives or carers, and sometimes also of employees who may have had to risk their jobs in order to speak out, the problem may never have come to the surface. But this aspect of the process is rarely considered in the inquiry and recommendations.

Big institutions like hospitals need to adopt a concept of their users as participant communities as well as individuals with specific conditions. Issues raised by individuals should be visible to all users. When someone raises a worry they should be able to see who else shares their concern. Contact should be facilitated with oversight from independent moderators between those users who want it so that they can build up a three-dimensional picture of how the organisation is working.

This is not instead of formal governing and monitoring systems but to open up a channel of timely dialogue and understanding with the community of users. The Morecombe Bay inquiry concluded, typically, that hospitals should ‘be open and honest when things go wrong’. This fails to grasp the bigger point. Less things would go wrong in the first place if there was a culture of open dialogue and engagement from the start. It would bring systemic problems to much earlier attention and save years of agony.

Read more about our Citizen Democracy series here.

The publisher is Citizen Network Research. Democratic Healthcare © Gabriel Chanan 2024.

Article | 07.03.24

Constitutional Reform, health & healthcare, Neighbourhood Democracy, politics, England, Article

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