How the web could make the wrok of carers more efficient and spread amongst more people.

1. Informal carers
New resources? New outcomes?
Evidence to the Burstow Commission
into the care work force
LGIU June 2014
Paul Hodgkin
Ex-GP, CEO Care Opinion
@paulhodgkin
PhotocourtesyofMILKFoundation

2. 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

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

4. 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 home
but it was awful arriving there at 22.00
after waiting all day for the hospital to
discharge her”.
Daughter
“We often find residents coming
back to us late at night”
Care home comment
People’s lives are the thread that binds silos of care together
Listening to carers and users is the key to better integration of services
Health servicesSocial care

5. Previously unheard staff groups are also getting a powerful voice:

6. Story Relevant
staff
Response Comment 1
Service
User 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

7. Staff ClientService Delivery
staff
staff
staff
staff
staff
The formal community of practice that exists around the clinical
services
The informal community of solidarity that exists around
the client as ‘friends & family’
F&F F&F
F&F
F&F
This has big implications for the two key communities
in health and social care

8. Staff ClientService Delivery
staff
staff
The community of practice is under pressure as never before
F&F F&F
F&F
F&F
And for different reasons, so is the community of solidarity

9. Staff ClientService Delivery
staff
staff
But new tools are changing the dynamics of these two communities:
They are becoming ‘effortlessly’ visible to each other
F&F F&F
F&F
F&F

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

11. Staff ClientService Delivery
staff
staff
• 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?
F&F F&F
F&F
F&F

12. 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

13. 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

14. 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

15. 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)