Proposals for a National Care Service do not fully consider the contribution from people with lived experience of the social care system, says the leader of a group that represents organisations run by and for disabled people.

Donald Macleod, Chief Executive of Self-Directed Support Scotland says a new social care system must value lived experience at its centre, to allow a “shift in power and resources toward people who need to make use of them”.

The government’s consultation on how it proposes to implement the findings of an independent review of adult social care, conducted by Derek Feeley, has now closed.

Mr Macleod told healthandcare.scot there’s a gap between what the Feeley group heard and what the government is proposing:

“We’ve had a focus on the lived experience of people experiencing self-directed support through the review of adult social care over the past year.

“The criticism that has been levelled at the NCS consultation document is that Derek Feeley really listened to people, but the value of lived experience is absent from the consultation.”

Concerns over the absence of people with lived experience arose previously when management consultancy giant PwC was contracted to advise on the ‘design’ of the NCS.

A member of the Social Covenant Steering Group, a panel set up the Scottish government to advise on the service’s development, said they were “astonished” this happened without their input.

They told healthandcare.scot: “So much for doing things differently and including people with lived experience as equal partners in decisions around the development of a National Care Service.”

The Scottish government have proposed people with lived experience will be part of local decision-making in the delivery of health and care services, as members of Community Health and Social Care Boards (CHSBCs).

Mr Macleod says it’s important these new roles have equal status:

“If you’re really going to value people and their contribution of lived experience, treat them with equity and value everyone’s time in the same way.

“If we’re going to take a loan of somebody’s life experience, treat it with due merit.”

The Self-directed Support Act has allowed individuals greater choice and control over how they receive social care support in Scotland since April 2014.

Hailed as an ambitious policy that could make a real difference to the lives of disabled people, campaigners say delivery has been held back by chronic underfunding, excessive bureaucracy, tightening eligibility criteria, regional inequalities in access, and growing waiting times.

Mr Macleod says the situation will “undoubtedly” have worsened during the pandemic:

“There’s been a great deal of inflexibility about how direct payments can be used over the past year,” he told healthandcare.scot

“The infrastructure that support people lacks funding and capacity with social work, independent support, brokerage, and advocacy critically underfunded and under significant strain.

“I think that infrastructure requires significant investment with the same national accountability as the NHS has if we are to sustain and improve support for the most vulnerable and poor in our society.

“Services have been designed around deficit and they are about crisis rather than citizenship.

“So that shift in power and resources toward people who need to make use of these resources is still required 10 years on.”

 

A full transcript of our conversation with Donald Macleod can be found here.

 

Read more: Sector reforms "must put social back in social care"; SDS is ‘for people with mental illness too’; Self-Directed Support ‘passport to independence’

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