No Voice Unheard… as long as we can afford it, says minister

The government has been accused of handing itself a “get out of jail free” card by proposing improvements to health and social care for people with learning difficulties but warning they will only be introduced if it has enough money.

The criticism came after the publication of the Department of Health’s response to No Voice Unheard No Right Ignored, a consultation on improving standards in the wake of the Winterbourne View abuse scandal.

The consultation was launched followed disappointment at the lack of progress made to move people with learning difficulties from inpatient hospital settings to community-based homes, and was issued earlier this year under the coalition government by the Liberal Democrat care and support minister Norman Lamb.

It was aimed at making it easier for people with learning difficulties, autism and mental health conditions to escape institutional care – often in settings far from their original homes – and live independently in the community.

The social care minister Alistair Burt said this week: “We expect to see a significant change in the experience of care and in outcomes for people with learning disabilities, autism and mental health conditions between now and 2020.”

Among the government’s aims are that people will, by 2020, “expect to be supported to live independently as part of a community and in a home they have chosen” and will “know their views will be listened to and be able to challenge decisions about them and about their care”.

But the document adds: “These proposals for action are put forward in the context of, and are subject to, the government’s comprehensive spending review [which is due later this month].”

Among the proposals – most of which apply only to England – are new guidance for commissioners of health and social care services; to pilot access to a named social worker as the primary point of contact for service-users; and to improve information-sharing between agencies.

It concludes: “We appreciate there will always be a small number of people who need care and support in hospital, especially in crisis situations, but we would expect that this will be for no longer than clinically necessary, and wherever possible located closer to where the individual lives or wishes to be.”

But Andrew Lee, director of policy and campaigns at People First Self-Advocacy, said he was unhappy that the government had said it needed to do more work but could only make it happen “if there is enough money”. 

He said: “It sounds like a ‘get out of jail free’ card.  It is saying thanks for your responses, but if we don’t have enough money then we won’t be doing any of this.”

He said he was also worried that there was no mention of whether disabled people and their organisations would be involved in writing the new guidance for commissioners.

Lee said: “It also talks about giving clear information about people’s rights and support to help them make their views clear. 

“It again does not say how this will be done and with fewer self-advocacy groups, I cannot see how local authorities are going to ensure that people with learning difficulties get this information and are aware of their rights.”

But he said he was glad that the government was taking the need for advocacy seriously, although he said advocates would need to be properly trained in how to work with people with learning difficulties and should be linked with local disabled people’s organisations.

He added: “I also like the idea of have a named social worker. This could make sure that people do not get lost in the system, being moved from person to person.”

But Lee said he had been expecting a much stronger document, and said it had failed to “lay down the law in a strong enough way”.

He said: “We are talking about people being locked away, yet there is no talk of any consequences for people who continue to do this (local authorities or commissioners).

“If there was another case such as Winterbourne View, what consequences would there be for the local authority and the commissioners who paid for this service and didn’t check that the service was working properly, that people had access to advocates and that people were being included in the decisions about their lives?”

The government says in the document that respondents to the consultation were “clear that one of the most significant challenges to supporting people to live in the community was the lack of available community services in some areas”, while they also heard “how important advocacy is to people and about the need for this to be independent”.

More than 100 of the 219 individual responses to the consultation came from disabled people.

The latest target agreed by local authorities and NHS England is to reduce inpatient numbers from about 2,600 people to between 1,300 and 1,700, by April 2019.

Campaigners have been attempting to persuade governments to end the use of inpatient beds for people with learning difficulties since the late 1940s.

As far back as 1951, the National Council for Civil Liberties released a report describing the regime brought in by the 1913 Mental Deficiency Act – which confined hundreds of thousands of people with learning difficulties to long-stay NHS hospitals – as “one of the gravest social scandals of the twentieth century”.