A former care services minister has called for a new social movement that is driven by the views and voices of service-users – rather than the charities that try to speak on their behalf – to push for change in the social care sector.
Paul Burstow said that the current campaigning model, driven by charities, had failed to persuade the government to reform social care and provide it with sustainable future funding.
And he called on the charity sector to step back and instead enable the voices of service-users to be heard, which he suggested was the only way to push the issue into the mainstream of political debate.
Burstow, a former Liberal Democrat MP, who was one of the architects of the Care Act 2014 as a coalition minister, and was appointed this summer as the new chair of the Social Care Institute for Excellence, was speaking at a fringe meeting at the Liberal Democrat party conference in Bournemouth.
The meeting had heard from the party’s shadow health secretary, Norman Lamb, another former care services minister, who spoke of his efforts to persuade the government and the Labour party to work together with his party to find a solution to the care funding crisis.
Burstow (pictured, centre) said that the “lived experience” of service-users needed to be at the centre of the social care debate if that debate was to move from the fringes to an issue that was “absolutely mainstream” in the mailboxes of MPs and local councillors.
He said this would be “a challenge for the charity sector” which was “very good at promoting its own activities” but not necessarily always at providing opportunities for their “beneficiaries” to highlight their own experiences and feelings.
He said there was a need for a new “social movement” for social care but that it “does need to be driven by the views and voices” of disabled and older people themselves rather than the charities.
He added: “Unless we do that, we are doomed.
“The charity sector is very wedded to a model of campaigning that is trying to persuade the government to change, but it has not succeeded.”
Burstow was speaking at the end of a fringe meeting he had chaired on behalf of the disability charity Dimensions and the Voluntary Organisations Disability Group, which represents charities that provide services in the social care sector.
The meeting included two service-users on the five-strong panel.
Dimensions, which provides support to people with learning difficulties, later welcomed Burstow’s comments.
Alicia Wood, head of public affairs for Dimensions, told Disability News Service that Burstow was “absolutely right” and that she was “thrilled” that he had made the comments.
She said: “I don’t think it’s intentional, but I think the social care debate is led by people who don’t use social care and I think that the ear of government is held by charities and I don’t think they are willing to let it go.
“Certainly I don’t think at the moment that it feels like they are willing to get behind disabled people’s organisations and disabled people to lead that, either.
“I think he’s absolutely right, I think it’s why we’ve failed.”
She said Dimensions had never been a campaigning organisation, but had decided that now, as one of the biggest charity providers, it “had a duty to support people’s voices”.
She said: “Dimensions have never had to think about this before and now we are thinking about it, saying we do need to do something, [but] we would want to do it in the right way, which isn’t about us, it’s about people that need social care.
“Our strategy is basically to get people with learning disabilities at the table of government and in the media.
“I think we need to use our might as a big organisation to support the broader voice of disabled people.”
She called on other charities to put their resources into supporting disabled people and carers to have “a real voice at the table of government because it is the authentic voice that government will listen to”.
Professor Peter Beresford, co-chair of the national servicer-user and disabled people’s network Shaping Our Lives, said it was “good to hear people like Paul Burstow call for a more user-led approach”.
But he said Burstow had not done so “when he was in a position to make this happen” as a coalition minister, when he had also “presided over massive cuts to social care”, so it was “difficult not to feel that he is strong on talking the talk but not on walking the walk”.
He said: “If he really wants a user-led movement, then why didn’t he involve user-led organisations like Shaping Our Lives (with whom he is in contact) as part of the process of building it.
“He needs to support service-users and our organisations, not speak on behalf of us.”
But he said Burstow “has really got it right about the traditional voluntary/charity sector, which has largely sat on its hands during the appalling years of cuts and welfare ‘reform’ which have so damaged so many disabled people’s lives and led to a UN outcry.
“Only when we have a user-led political strategy can we have real hope, and so far the only party that offers any prospect of that is Jeremy Corbyn’s and John McDonnell’s Labour party.
“Here are leaders who determinedly challenged welfare and social care cuts consistently over the years.”
He added: “Both Paul Burstow and Norman Lamb sadly presided over massive cuts in social care as ministers under the coalition government, so it is perhaps not surprising if the Labour party is not very responsive to their calls for a united front.”