Yesterday, United Response attended the last All-Party Parliamentary Group (APPG) on Learning Disability of this parliament.

Perhaps quite fittingly, the group’s discussions centred on the most shocking abuse and neglect of people with a learning disability of the last few years: the expose of the Winterbourne View assessment and treatment unit (ATU) by the BBC’s Panorama back in 2011.

During the course of this parliament, inquiries into what happened revealed that the NHS and local authorities throughout England were sending many people with a learning disability to similar ATUs for long periods of time. People in these long stay hospitals are far away from their families and at serious risk of abuse and neglect.

Members of the APPG talked about efforts to change the models of care in which such people are cared for, so that they are treated with dignity within their own community and without running the risk of abuse.

Context of the discussion

The group discussed how, after a number of reviews into what happened at Winterbourne, the government failed to meet its own targets. A review stated that people with a learning disability should be moved out of ATUs and back to support within their local community by June 2014. Not only was the deadline missed by the government, but NHS data showed that even more people had gone into inpatient settings than had come out.

Yet another report by Sir Stephen Bubb was published last November calling for the closure of inappropriate care settings.

A National Audit Office investigation and the House of Commons Public Accounts Committee found that the government had failed to meet its targets set out in 2012, and recommended that every patient should have a discharge plan.

Finally, Care Minister Norman Lamb published a Department of Health Green Paper earlier this month entitled ‘No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions’.

This green paper is a further consultation to see how the rights of disabled people and their families might be strengthened to challenge inappropriate admissions to ATUs, and be supported to live independently within their local communities.

“The horror of families feeling that they aren’t listened to has to end”

Norman Lamb sent his apologies to those at the APPG, having had to cancel his appearance to talk about the Green Paper due to a constituency matter.

In a statement read out on Mr Lamb’s behalf, the minister said: “The horror of families feeling that they aren’t listened to and that their concerns are ignored has to end. This will take time. The system is complex and often confusing. Issues like making it harder to admit people to institutions in the first place, and making sure that there is community healthcare to help them to live independently, won’t be solved overnight.”

The frustration felt by families of those people still in ATUs was tangible at the meeting.

For these families, four years of inquiries, recommendations, consultations and agreement of the need for change seem to be compounded by a lack of action.

This issue – of giving people with learning disabilities, autism and mental health problems and their families the right to challenge the care that they receive, and the right to be cared for within their local community – was expressed very passionately by family members. Several people with sons, daughters and siblings still in inappropriate care talked of their desperation and frustration at the situation.

A need to move towards community care

Simon Stevens, CEO of NHS England, spoke about how he wants the NHS to move away from institutional care models and towards community care.

Perhaps the subject was best surmised by Mr Stevens when he said: “It's not that we don't know what needs to be done, we just need to do it.”

United Response looks forward to contributing to the Green Paper consultation on behalf of all the people we support. We will urge the next government, whoever it might be, to deliver on inclusive community care for people with learning disabilities, autism and mental health needs, and to stop inappropriate inpatient admissions to settings that are far from home and loved ones.

John JC Cooper, campaigns manager.