How patient-centred are we these days? Are health and social care becoming more attuned to the needs of service users, carers and communities? These are vital questions as we approach next year’s general election. At our annual conference on 26 March, National Voices members will consider what progress has been made, what still needs to be done and what politicians ought to do, and not do.
The coalition government’s health agenda began with Andrew Lansley’s “no decision about me without me” and became Jeremy Hunt’s “putting patients first”. They are not the same. “No decision about me without me” is the battle-cry of the empowered service user. “Putting patients first” is piety from the professional viewpoint. While Andrew Lansley flirted with “liberation”, Jeremy Hunt has focused on providing public reassurance in the wake of Stafford and Francis. The emphasis has been more on protecting than empowering patients.
So, are we getting nearer to a person-centred health and care system, or are we seeing a retreat into paternalism? For a fuller picture we need to be clear what “good” looks like, and it is not one thing. Politicians of all stamps are prone to reach for a silver bullet. For a time under the previous Labour government it was “choice”. Under this administration, various ideas have had their time in the sun – for example, “transparency” and “customer feedback” in the form of the Friends and Family Test.
A person-centred health and care system has a number of characteristics. Spelling them out will help foster common understanding and create a framework against which demands can be made, and political and health leaders held to account – a manifesto, if you like, for patients and citizens.
So what are these characteristics? At National Voices’ conference, our members and friends in the field of health and social care will debate this question. Here are five candidates:
1. We are supported to live well
More of us are living longer and with multiple chronic conditions, disabilities and frailty. It is a defining challenge of our age. There is a growing consensus about what to do. It is expressed in the government’s plan for “vulnerable older people”; the integrated care pioneer programme; National Voices’ vision for coordinated care; the Sir John Oldham report; the House of Care model; and reports too numerous to mention from the King’s Fund and Nuffield Trust and other think tanks. They all point in the same direction. They espouse more social and participative models of care. They embrace digital technologies. They take a broader view of the health and care “workforce”, which includes patients and service users themselves, carers, befrienders, peer supporters and the voluntary sector. These approaches stand to make health and social care more affordable in the long term, but the key measures of success are about quality of life: people feeling they have both the control and the support they need to live - and die - as they would wish.
2. Those of us with the worst health and the worst experiences of care are taken more seriously
The last few years have seen much hand-wringing about health inequalities and not enough action. We need our leaders to see health as human rights issue; to do more about social and economic inequality; to do more for people with mental ill-health; to direct more resources to deprived areas.
3. We define what good looks like
In Islington, commissioners worked with older people to discover that what they wanted was not “reduced emergency admissions” but “more time spent at home”. They sound similar but have importantly different implications for services. Ara Darzi famously affirmed patient experience as a fundamental dimension of quality, but many still see a hierarchy, with system measures of success coming ahead of what matters to patients. A “system” view is more likely to blame patients for “inappropriately” attending A&E, rather than engage with what makes A&E a popular and compelling service. A “system” view is more likely to dismiss unhappiness with hospital car parking as peripheral than to see it as a clinical quality issue. This needs to change.
4. We are partners in decisions about services
There is now no shortage of knowledge about how to do this well. The trick is to move with energy and commitment from a traditional model of episodic and formulaic “consultation” towards a continuing dialogue in which service-users, citizens, communities and lay leaders have a real say, and things change. The jargon for this is “co-production” but this is really about bringing greater democracy to health and care.
5. We have an influential voice in national decision making
When the new GP contract and the new drug pricing regime were negotiated, patients and citizens were not at the table. What did the troubled launches of Care.Data and NHS 111 have in common? Patients and citizens were not at the table. Despite all the rhetoric about “parity of esteem” the tariff for mental health services has been cut, with no service users and citizens at the table. And in Clause 119 of the care bill the government has sought to reduce the scope of patient and public involvement in decisions about local services. There are many well-meaning efforts to engage people who use services and voice organisations like National Voices, but they remain inconsistent and often late in the day. Too often, national leaders default to diktat, become blinkered by self-imposed deadlines; or restrict their discussions to health professionals’ groups. That’s a shame, because we can help. A strong service user and citizen voice in national decisions is likely to make those decisions better.
These are just five strands of a draft manifesto for patients, people who use services and carers. We look forward to discussing these and other questions - before, during and after the National Voices conference.
What does a person-centred health and care system mean to you? What characteristics does the next Government need to foster or protect? What role should it play? Join the debate by commenting below or emailing firstname.lastname@example.org.