Learning disabled people will get named social workers to ‘challenge’ NHS decisions

People with learning disabilities, autism or mental health conditions who are at risk of hospital admission will get a named social worker to challenge decisions about their care, the government has announced.

The move will be piloted and rolled out nationally if successful. Ministers picked social workers for the role because of their independence from clinical teams.

The scheme is part of the government’s response to the consultation on the ‘No voice unheard, no right ignored’ green paper. The paper set out proposals to strengthen the rights of people with learning disabilities, autism or mental health conditions and their families.

Other commitments in the government’s response include new guidance for health and social care commissioners and a pledge to change Mental Health Act regulations so professionals must record why a person can’t be treated in the community.

Key legal changes shelved?

However, the government has sparked anger by failing to commit to legal reforms set out in the green paper.

Instead “further consultation” will be held on proposals to change the Mental Health Act to give people the legal right to challenge a hospital admission if they feel their wishes haven’t been taken account. This will also consider whether people should get a new right to choose their own ‘nearest relative’ – a role that involves specific legal duties under the act, if they wish to.

There is no commitment to even consult on a separate proposal to address how the act’s definition of ‘mental disorder’ is applied to people with learning disabilities or autism.

The green paper was published by the coalition government prior to May’s general election. It was drawn up at the request of ex-care minister Norman Lamb after he became concerned service users and families were being let down by the system.

‘New rights needed’

Lamb told Community Care he was “immensely disappointed” by the government’s response to the proposals for new legal rights.

“My fear is this is simply being pushed into the long grass. They have said they will consult on some changes but no timetable has been set out and the green paper process already provided consultation,” he said.

The government’s consultation response said “the required scale and pace of change” would be delivered through a package of measures. This included the new guidance for commissioners and a previously announced NHS England-led plan to work with health services and local authorities to close learning disability inpatient units.

Lamb warned the government against an over-reliance on organisations to make the changes required to improve care. As care minister, he oversaw the Winterbourne View concordat – a shared commitment between government, NHS and councils. The scheme failed to deliver on its target to end inappropriate hospital placements for people with learning disabilities.

“I know from bitter experience that sometimes commitments from the top of organisations are not enough. That’s why we need both a [learning disability unit] closure programme and legal rights. Rights so that you can challenge decisions made about you, rights to have control of the budget available for your care, and the basic sense of a right to live in the community if you’re able to,” said Lamb.

‘A lost opportunity’

Learning disability and autism charities criticised the government’s green paper response.

Mark Lever, chief executive of the National Autistic Society, said ministers had shown a lack of leadership by failing to take forward the proposals for legal rights.

“This is unacceptable and doesn’t give individuals with autism and their families the assurances that things will improve,” he said.

In a statement, Mencap and the Challenging Behaviour Foundation said: “Families have already told the government about the devastating consequences of the serious power imbalance in the system – an imbalance which often results in the voices of people with a learning disability being ignored. Today’s response from the government to the consultation does not go far enough to address this and will deeply alarm and disappoint many families.”

Rob Greig, chief executive of the National Development Team for inclusion and former government learning disabilities director, said: “This is a massive lost opportunity. The document completely lacks a framework and vision for how people with learning disabilities can be supported to have better lives in the future.

“It repeatedly promises new guidance to facilitate change when such guidance already exists. There are no actions or proposals in the entire document that make positive change more likely and many of the good ideas contained in the original consultation have been shelved.”

Government response

However, care minister Alistair Burt said: “The result of this work, alongside the NHS’s Service Transformation Plan, will be a sea change in the way support people with learning disabilities in this country.”

In his foreword to the government response, Burt explained the government’s response by saying that consultation respondents had, alongside suggesting more challenging and aspirational ideas, placed “an emphasis on getting the basics right”.

He added: “That is why you will find that this response is phased so that we can make progress urgently by building on existing momentum and implementing change quickly as well as setting out a longer term plan that will tackle some of the most difficult and complex challenges.”