A manifesto for people centred care

This is my speech to the National Voices Assembly yesterday, in the fabulous architectural gem, the Great Hall, Westminster…

Good afternoon.

What a privilege it is to be invited to speak here.

I came to a conference here last year, in the main hall, and was really looking forward to spending in that great arena, with such wonderful architecture…

Well, it’s a lesson. It’s not the architecture or the building that matters, it’s the people inside. It’s the interactions, the networking, the sharing…the people…You

I want to start a revolution. Right here, right now.

The crisis in healthcare and social care, the result of, let’s be clear, political decisions about funding, means we absolutely have to change.

We have an NHS that provides mostly crisis care, interventions when people become acutely ill, and which cannot survive much longer in the form we know.

We have social care that provides ever less actual care. 400,000 less people supported now compared with five years ago, I read recently.

Carers are turned away when they ask for help, barriers go up, applications forms are given out, assessments made, changed, reviewed…until carers can cope no longer. Then the NHS and the Care system pick up the pieces at huge cost. Carers may be admitted to hospital, ill. Their cared for are admitted to hospitals and care homes.

A year in a nursing home costs £36,000. A week in a hospital costs £2,000. What else could we buy for this money?

We often read about personalisation described as “wrapping services around patients”, like some warm, rose tinted duvet. Has this worked? Is it possible in the current fragmented systems?

No.

What we need is to listen to individuals. Listen when they ask for help. Provide ways for them to get support and information when they need it, and in the form they find useful.

We need to move from a service centred, patriarchal model of health and care to a person centred model.

We need to co-produce solutions individually with people who need care and support. We need to ask what matters to the patient or the carer, to ask what we can provide to help them through challenging periods.

We need to provide support and care at and after diagnosis, not wait for crisis.

We need to invest now to save later.

We need to invest now to keep people at home and involved in their communities.

Social return on investment analysis of social prescribing, signposting, peer and carer support programmes show huge returns on investment. Commissioners should be investing in these schemes to save money spent on crisis management.

We need to invest now in people’s health and wellbeing, by asking them what matters to them. What makes them get up in the morning? What keeps them happy each day?

We need all healthcare and social care to be co-designed with people who now use services or will do in the future. From the start, not as consultees on a model already dreamt up by clinicians or commissioners.

We need citizens, patients, carers, to be co-producers alongside professionals in the design, delivery and evaluation of services.

We should be de facto sitting alongside the professionals and clinicians whom we pay to provide our health and social care to make sure they provide what we want, value and need. We should no longer be passive recipients.

People who have grown up as, or been institutionalised into, being passive recipients of care need to be coached and activated so they can play an active role in living well and maintaining their health.

We need patients and carers all to be fully involved in co-producing living plans which provide real, practical ways of supporting them to live the lives they can and want.

The support I am talking about does not have to be expensive. Peer groups, activity groups, respite periods, dementia or diabetes advisers. Healthy living hubs. Dementia Centres.

Research and anecdotal evidence tell us that what people want are:

a single point of access to all social or health support

Someone who knows them who they can call, email or text when they need to talk or when symptoms change, and who can attend meetings or appointments with them if need be, or help with benefits

Respite when they ask for it

The chance to share problems and experience, and chat to, people in similar circumstances, carers or people living with the same diseases

Information when they need it and in the form that is right for them

A single, shared electronic record which they and their care professionals have access to, and which they can give additional access to, so they don’t have to keep telling their story time and again and clinicians can treat the person holistically

A shared, co-produced living plan, which again they can share with whoever they choose
We must put people at the centre of what we do.

We must stop trying desperately to fit existing service models and pathways around people. These are failing.

We must abandon the traditional hierarchical view that professionals know best about what people want and how they want to live their lives.

We must create a model which allows people to get the support they want, when they want it, and in the form that they choose.

This is not nirvana. It is not impossible. It is not idealistic and perfectionist. We can achieve it.

There is change afoot in the NHS. Vanguard sites are seeking to redefine the ways healthcare is organised and delivered.

There are examples of wonderfully creative projects in the third sector doing just the things I have talked about.

But they are too few and too far between.

We do need some double funding to enable this work to start, but there will be big savings in years to come.

And, which is more, hugely improved health and wellbeing for us all.

This would be a revolution.

I am challenging those in power to give their power up.

To share it with us.

To allow us, and to support us, to live our lives in ways of our own choosing.