There is more evidence than needed to prove that many people with learning disabilities are treated badly and without respect in NHS-provided facilities, argues Barbara Perry. A campaign is seeking to provide people with learning disabilities, and their families, with stronger legal rights.

Eighteen year old Connor Sparrowhawk was found dead in a bath at Slade House, Oxford, an NHS assessment and treatment unit. Connor had learning disabilities and drowned in the bath – it is thought he had an epileptic seizure prior to drowning.

The Southern Health Trust initially attributed Connor’s death to natural causes, but an independent investigation concluded it was preventable. The Care Quality Commission inspected the unit at Slade House and said that it did not meet the required standards.  The unit is now closed to new patients.

Connor’s death was one of many shocking examples of the Death by Indifference highlighted by Mencap’s 2007 report of that name. This report was followed-up by another: Death by Indifference: 74 deaths and counting. A progress report five years on.

This second report stated that we have “an NHS that continues to fail people with a learning disability, doctors whose practices appear to show no regard to the Equality Act or Mental Capacity Act, and nurses who fail to provide even basic care to people with a learning disability.”

Connor’s mother Sara Ryan – a senior research lead at the University of Oxford, with an interest in autism and disability health experiences – is leading a campaign to secure ‘Justice for LB‘ – Connor was nicknamed Laughing Boy. The campaign aims to improve the lives of all learning disabled people. The campaign is particularly concerned to gain justice for the increasing number of learning disabled individuals who are transferred to care in assessment and treatment units.  While there they often receive inappropriate care and support – and the centres may be a long way from their homes.

The number of learning disabled people transferred to these in-patient units continues to rise, despite attempts to reduce these figures following the recommendations of the 2012 Winterbourne Hospital Review and more recent guidance.Winterbourne View was a private hospital near Bristol, which was used by the NHS.  After a BBC Panorama documentary revealed abuse, 11 staff were found guilty of neglect and abuse charges, with six imprisoned and five given suspended sentences.

A just published report from Sir Stephen Bubb, chief executive of the Association of Chief Executives of Voluntary Organisations, warns that there are continued failures by facilities for people with learning disabilities, with many learning disabled people forced to live in them for far too long. Sir Stephen recommends a charter of rights for people with learning disabilities. He calls on the NHS to close “inappropriate” in-patient facilities.

Sir Stephen’s report was commissioned by NHS England, which has recognised that there are “serious shortcomings” in support and care for people with learning disabilities. As part of the charter of rights for people with learning disabilities or autism and their families, Sir Stephen says there should be a ‘right to challenge’ NHS decisions and also a ‘right to request’ a personal budget to pay for the most appropriate care.

Local decision-makers should be required to follow a mandatory framework setting-out who is responsible for which services and how they will be held to account.  There should also be improved training and education for relevant staff in the NHS, local government and service provider organisations.  He wants to see a social investment fund created to build more appropriate community-based services.

The Disabled People (Community Inclusion) Bill 2015, launched on 4 November 2014, is one outcome of the on-going campaign. The authors of the Bill think there are two key things that must change:. Firstly, they want to make it a reality for disabled people to be fully included in their communities, backed by a legal right.  Secondly, the authors want to make it harder for the state to force disabled people to leave their homes against their wishes, or the wishes of their families.

The LB Bill authors have posed several questions about its clauses to promote this debate and are asking as many people as possible to share their views on what they feel would work and not work. They suggest it would also be very useful if people could test out the Bill using their own situation, asking themselves what clauses would benefit them and what might work against them.

As part of the campaign to improve provision, an ‘Open Discussion’ is being held on Monday 1 December, which is taking place in room AG 3/4 Ellen Wilkinson Building at the University of Manchester.

More information is available through the email address psgspeakup@outlook.com and via Justice for LB and LB Bill Facebook pages, Twitter @justiceforLB and #justiceforLB #LBBill or their email LBBillfeedback@gmail.com.