Lamb: ‘Families won’t tolerate learning disability reforms being ditched post-election’

People with learning disabilities and their families won’t tolerate it if proposals to strengthen their rights and tackle high rates of institutional care are dropped after the election, care minister Norman Lamb has said.

The government has published a set of proposals to amend legislation and statutory guidance to improve care for people with learning disabilities, autism and mental health conditions. The timing of the move is highly unusual as the 12 week consultation closes on 29 May, three weeks after the 7 May general election. That means any decision whether or not to develop the proposals further will be down to the next government.

Call for consensus

In an interview with Community Care, Lamb, a Liberal Democrat, said that the proposals were coalition government policy and his party was committed to acting on them if it was in power after the election. Each of the other parties will have to make its own decision on whether to act on the proposals if part of the next government, he said.

Lamb has written to Labour shadow health secretary Andy Burnham asking him to back the plans. At time of writing Labour had not issued a response to the proposals. A Conservative Party spokesman told Community Care that the party would continue the “important work” set out in the consultation if it was in power.

“These are quite big changes proposed, including to the Mental Health Act, but I don’t think it needs to be that politically controversial. So I think there is a real chance that we can build consensus here and it could become an urgent priority for the next government,” said Lamb.

“Of course there’s no guarantee of that and whether I’m in or out I will push very hard myself to ensure that it happens. From the impression I’ve got this morning, the consultation has been strongly welcomed and I don’t think families will tolerate it if it then gets put on the back burner.”

The proposals 

The proposals aim to transfer power from services to people and promote community support as an alternative to hospital. Lamb said he wants to give more people with learning disabilities the right to a personal budget and make it harder for people to be institutionalised due to “lazy commissioning”. In a foreword to the report, Gavin Harding, who has experience of being admitted to learning disability inpatient units, said the plans were a chance to deliver change whoever is in government.

In 2012 the coalition government pledged to end inappropriate hospital admissions of people with learning disabilities – its key response to the Winterbourne View scandal. The government failed to deliver on its commitment and as of 31 December, 2014, there were 2,453 people with learning disabilities or autism and additional mental health needs in inpatient settings.

A National Audit Office review of the failure to meet the Winterbourne View target found that the government’s decision to delegate delivery of the scheme to local bodies and NHS England was in line with the coalition’s reorganisation of the NHS under the Health and Social Care Act 2012 but ultimately left ministers unable to compel those responsible to implement the necessary changes.

Post-Winterbourne progress

Lamb said that the failure of the post-Winterbourne View programme to deliver change had been a “painful two years” but he rejected the suggestion that the coalition’s NHS reforms were a major barrier to progress, arguing that issues around central government’s influence on local organisations have long existed. However, the lack of learning disability data that existed in 2012 to judge the Winterbourne policy’s progress against was a significant problem, he said.

“We have to remember there has been some justification for that move away from issuing diktats from Whitehall. Yes it can be intensely frustrating when as a minister you’re trying to achieve change. But under the old regime PCTs [Primary Care Trusts] had considerable powers to make their own decisions and I was forever being told as an opposition spokesperson that this is a matter for local commissioners. That was the philosophy,” he said.

“I don’t really buy the idea that suddenly the world changed dramatically with the Health and Social Care Act. I think the philosophy is largely consistent with what went before. I concluded [from the experience of the Winterbourne policy] that the answer had to be more about giving people stronger rights around their care. That to me is central to all of this.”

Families’ experiences

Lamb’s view that a stronger focus on rights is needed has been influenced by the experiences of families of people with learning disabilities, he said. The consultation paper says that the Justice for LB campaign – a grassroots movement set up following the death of Connor Sparrowhawk, an 18-year-old with learning disabilities – made a “powerful” case for change and the group fed into the proposals.

A recent survey of people with learning disabilities and carers carried out by the Learning Disability Alliance issued a damning verdict on the coalition’s track record in supporting them. Asked to rate the government’s performance, the overall score the results returned was 2 out of 10.

Asked about the survey findings, Lamb said: “I’ve had so many families telling me that they aren’t listened to, they are clearly ignored and their voice isn’t heard so I think I’d react in a similar way…All I know is that the people with a learning disability that I work with and the organisations I work with, I think know my commitment to change and have been very supportive of the steps I’ve tried to take around this green paper to force change.

“So I’m not surprised by those findings. I think it’s a reflection of how people are bound to feel after having been failed by the system. I’m determined to change that and I think we’ve got a chance with this.”

Update: Here is the full statement from the Conservative Party: “We brought forward this consultation in government to strengthen the rights of people with learning disabilities and give them access to the best care possible, and Conservative Government in the next Parliament would continue this important work. Everything must be done to prevent cases like the horrific abuse of people at Winterbourne View hospital.”