NHS empowers families to challenge any unacceptable care of patients with learning disabilities

The NHS has created new guidance to help empower families of people with learning disabilities to challenge any unacceptable care in the wake of abuse uncovered at a treatment unit.

In 2011 Panorama exposed abuse at an in-patient Assessment and Treatment Unit for people with learning disabilities at Winterbourne View in South Gloucestershire. It led to several staff being prosecuted and the unit being shut down.

A national inquiry into the case and the subsequent report highlighted that families were often not involved in decisions about where people were sent, parents and siblings found it difficult to visit and families’ concerns and complaints were often not acted on.

To help ensure that in future patients’ relatives and loved ones feel able to challenge such practices, NHS England’s London region has worked with carers who have direct experience of hospitals to ask them what would have helped them.

Their experiences and advice have been pulled together into a new booklet, available to anyone across the UK, to help guide the families of patients admitted for mental health difficulties or challenging behaviours. The “Getting it right for people with learning disabilities” booklet can now be downloaded here.

It includes information on the different types of units people with learning disabilities might be admitted to and how and why people go into such units. It also sets out assessment procedures, the kinds of healthcare professionals involved in patient care and the rights and responsibilities of patients.

Along with checklists and examples of what good care looks like, the booklet includes explanations of the law behind a person being admitted voluntarily to a hospital or ‘sectioned’. It also sets out clear examples of the kinds of questions people should ask, how people should raise concerns about any care and where they can find more information or support.

Caroline Alexander, Chief Nurse, NHS England, London, said: “The way the NHS cares for vulnerable patients should be one of our greatest priorities and also acts as a true litmus test of quality of care more broadly across the NHS.

“For people with learning disabilities, their relatives and loved ones make a unique contribution to their lives but when they go into hospital, this role can often be underestimated and understated.

“We want families, partners and carers to feel empowered to ask the right questions and to challenge any behaviour they feel is unacceptable to help ensure that every patient receives compassionate and dignified care tailored to their needs.”

The booklet highlights how people with learning disabilities and their families can feel powerless faced with psychiatrists, psychologists and other health and social care professionals talking about the Mental Health Act, units with locked doors, staff with bundles of keys, panic alarms and rules.

However, it says this should not put people from visiting or asking questions because the patient needs the contact and families need information.

It also says it is really important that families feel fully involved in the support and treatment given to their loved ones and highlights how, just because someone has a learning disability that does not necessarily mean they are unable to make a decision for themselves.

The booklet states that in the past many patients have been admitted to Specialist Assessment and Treatment Units that are too far from home, family and friends. They have also stayed in them too long.

The Government has said this must change and in future better services will be developed in local areas to assess and treat people at home.

NHS England has also made a commitment to champion the involvement of patients and carers in decision making about managing their own care and treatment.