Informal carers

New resources? New outcomes?

Evidence to the Burstow Commission into the care work force

LGIU June 2014

Paul HodgkinEx-GP, CEO Care Opinion

@paulhodgkin

Photo courtesy of MILK Foundation

Informal and unpaid caring:• Keeps the formal, paid-for caring economy afloat• Makes a massive economic contribution• Is under stress as never before

But new tools and resources are being created that• Use carers insights in new ways• Expand the pool of informal carers• Make informal caring more efficient

For example citizens now have a public voice via Twitter, blogs, Facebook. This gives them more power

Care Home

Care Home

Step down facility

Ambulance

Local NHS FT hospital

Ambulance

Ambulance

Community physio

“The ambulance arrived quickly”Daughter

“We really liked the step down homebut it was awful arriving there at 22.00after waiting all day for the hospital to

discharge her”.Daughter

“We often find residents comingback to us late at night”

Care home comment

People’s lives are the thread that binds silos of care togetherListening to carers and users is the key to better integration of services

Health servicesSocial care

Previously unheard staff groups are also getting a powerful voice:

Story Relevant staff

Response Comment 1ServiceUser Comment 2

User Organisations

CQC and Monitor

LAs and CCGs

HealthWatch, H&W Boards

National government, and MPs

Automatic notification

Comment from patient

Service improvement

So we can use these conversations as a scalable, new driver of quality across health and care

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The formal community of practice that exists around the clinical services

The informal community of solidarity that exists around the client as ‘friends & family’

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This has big implications for the two key communities in health and social care

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The community of practice is under pressure as never before

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And for different reasons, so is the community of solidarity

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But new tools are changing the dynamics of these two communities:They are becoming ‘effortlessly’ visible to each other

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And the community of solidarity is getting new tools to help it coordinate, stay in touch, organise

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• How can we use these new tools to extend the size and role of the community of solidarity?

• What is the role of government and regulation in this?

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Emerging solutions

• South London AHSN is using Patient Opinion to link up the community of practices across 6 departments dealing with dementia across 6 South London organisations

• Mumsnet is using Patient Opinion to help the community of solidarity around miscarriage improve services

• CleverTogether link the community of paramedics in an Ambulance trust to suggest and plan improvements

So users and carers are the most important workforce for:• Face-to-face caring• Coordination of care• Driving improvements

The good news is that the new network tools means that this workforce is now potentially: • Bigger• More informed, skilled and resourceful• Better able to coordinate with itself and with clinicians

The bad news…The new resources around informal caring are discretionary and untested

• Intrinsically hard to command or control

• Users tend to love their bit of the informal caring economy, but dislike it in principle because it feels unreliable and stresses their loved ones

• It is hard for statutory services to ‘get’ working with the informal caring economy because they are used to being in charge

• It is hard to build policy around this – witness the Big Society

• And many informal carers are already under stress

So what might policy recommendations be?

• The economics are on the side of the web because the costs of formal services are rising while those in the ‘sharing economy’ are falling

• Pay as much attention to emerging web tools and social movements as to formal care sector

• Encourage experimentation, learning and failure

• Don’t try and control, legislate or shape this space (at least not yet)