Let's challenge politicians' 'patients first' rhetoric

“Putting patients first” is the health mantra of our times. But progress has been slow. Many patients, users of services and carers don’t feel that their needs are met or that they have a real say.

Despite the rhetoric, it’s not clear how much the reality has changed. In some respects, social care support for disabled people for example, you could argue that things have got worse.

‘We have known for a long time that involving people in the business of health is an essential ingredient of tackling illness’

This parliament has seen some serious moves towards creating genuinely person centred care and support. The Care Act and the various efforts to promote system-wide integrated care at local level are perhaps the best examples.

But bigger forces threaten to undermine these advances: health inequalities; the health impacts of austerity; and the growing funding pressures in health, social care and public services. The reorganisation following the Health and Social Care Act has not helped.

This matters deeply. We have known for a frustratingly long time that involving people in the business of health is an essential ingredient of maintaining health, tackling illness and sustaining services. The evidence published by National Voices earlier this summer, summarising nearly 800 studies, shows in detail what works and how.  

Going mainstream

The next government needs to make person centred care the central ambition of health reform. In our pre-election call – aimed at the political parties and also health and care leaders – National Voices sets out what is required.

‘Britain committed to universal healthcare in 1948 in post-war austerity. We should reaffirm this commitment now as a much richer country’

At the core is the need for coordinated services that enhance health, wellbeing and quality of life for people with the biggest burden of ill health and disability. We know a lot about “what good looks like”. Shared treatment decisions, supported self-management, care planning, access to health records, peer support and other related interventions make a big difference.

All these things are in play now, but often at the margins. For example, the GP survey suggests that only 3 per cent of people with chronic conditions have a care plan. These approaches must become mainstream.

What will it take? We think it needs the following:

• a step-change in the cross-government drive to improve public health and narrow health inequalities; 
• national leadership of the ambition for person centred care, this includes holding systems to account for outcomes that matter to people;
• the avoidance of more major structural reorganisations;
• local leadership, collaboration and flexibility – with moves towards joint commissioning and budgeting;
• training for practitioners in person centred care;
• properly embracing and supporting the  contribution of carers, volunteers and the voluntary sector in helping people; and
• citizen involvement in decisions about services, based on the principles of coproduction.

And, yes, it will need more money. Austerity has taken its toll and the current levels and projections of funding for health and social care are unrealistic. Without real terms funding growth in the next parliament, the founding principles of the NHS are increasingly at risk and the policy goals of the Care Act unattainable.

Britain committed to universal healthcare in 1948 in the middle of post-war austerity. We should reaffirm this commitment now as a much richer country, emerging from recession.

• Hear the patient voice: their perspectives speak loudly to trusts
• A new era of citizen health is shaping the future of care
• Activate the next level of patient engagement

Constructive criticism

Of course it is not right to pour more taxpayers’ money into doing the wrong things. Money has to go hand in hand with reform. The changes we call for are not possible without the stability and certainty of a five year settlement for health and care. 

‘We require more courage from political leaders and a greater degree of constructive challenge from patients and citizens’ 

There is one final challenge and it is perhaps the most difficult of all. We call on political and health leaders to make people the priority, not the system. People in the “system”, practitioners and managers, really struggle with this. That is not to impute bad motives or to engage in hand wringing about “culture”. It is to recognise that professional, financial and organisational priorities routinely trump the priorities of patients and their families. 

We see this at work when services are withdrawn without consultation; when people are “blamed” for turning up at accident and emergency; when GPs impose a “one problem per consultation” rule; when a hospital patient rings for attention and nothing happens; when people experience the over-medicalised death they didn’t want; when people find themselves passed from pillar to post. We saw it in extreme form at Stafford and Winterbourne View.

The system views the patient through its own lense and the system comes first. More compassion, though welcome, won’t fix that. This is the everyday reality that gives the lie to the easily trotted out assurances about patients coming first.

What will it take to change that? It will need all the things that National Voices is asking for and more. In particular, as we approach the next election, it requires more courage from political leaders and a greater degree of constructive challenge from patients and citizens.

Jeremy Taylor is chief executive of National Voices