Investigation reveals appalling neglect by NHS of people with learning disabilities

NHS and social care staff have been responsible for an appalling catalogue of neglect of people with learning disabilities, the health and local government ombudsmen say today after an investigation into six “distressing” deaths.

They included the case of a 43-year-old man with Down’s syndrome and epilepsy who starved for 26 days in Kingston hospital, Surrey, because he was unable to speak.

The ombudsmen found patients with learning difficulties were treated less favourably than others, resulting in “prolonged suffering and inappropriate care”. When relatives complained, they were left “drained and demoralised and with a feeling of hopelessness”.

The investigation upheld complaints of maladministration against seven NHS trusts and two local authorities involved in the six unrelated deaths between 2003 and 2005. It also criticised the watchdog, the Healthcare Commission, for failing to deal properly with complaints.

Ann Abraham, the health service ombudsman for England, said: “The recurrence of complaints across different agencies leads us to believe the quality of care in the NHS and social services for people with learning disabilities is at best patchy, and at worst an indictment of our society.”

The report highlighted “distressing failures in the quality of health and social care,” Abraham said. No investigation could reverse the mistakes, “but if NHS and social care leaders take positive steps to deliver improvements in services, this may bring some small consolation to the families and carers of those who died,” she added.

Jerry White, the local government ombudsman, said: “Basic policy and guidance were not observed, the needs of people with learning disabilities were not accommodated and services were unco-ordinated. The complex factors, which led to these failures to protect vulnerable individuals, demonstrate the need for stronger leadership throughout the health and care professions.”

The investigation found Mark Cannon, 30, died eight and a half-weeks after being admitted to Barking, Havering and Redbridge hospitals NHS trust with a broken thigh bone. He was clearly distressed and in pain, screaming and banging his head, but he had to wait three days to see the pain team. White said his death could have been avoided, and that it occurred “as a consequence of service failure and maladministration”.

Martin Ryan, 43, went without food for 26 days after being admitted to Kingston hospital following a stroke. By the time staff realised what was happening, he was too weak to be helped. He had a severe learning disability and no speech. The ombudsmen said it was likely his death could have been avoided, “had the care and treatment provided not fallen so far below the relevant standard”.

They also upheld complaints of service failure and maladministration in the cases of Tom Wakefield, 20, and Ted Hughes, 61.

A hospice consultant recommended that Wakefield’s pain should be investigated by a gastroenterologist, more than a year before he died. No action was taken until it was too late. He had profound and multiple learning disabilities and his expressions of pain were not listened to.

Hughes, 61, was discharged three weeks after being admitted to hospital for a minor operation, despite his condition having been assessed as “concerning”. He collapsed and died the following day. He had a severe learning disability and virtually no speech.

The ombudsmen upheld complaints against Buckinghamshire hospitals NHS trust, Gloucestershire county council, Cheltenham and Tewksbury primary care trust, Gloucestershire partnership NHS foundation trust, Kingston hospital NHS trust, London borough of Havering, Barking, Havering and Redbridge hospitals NHS trust, Royal Berkshire NHS foundation trust, and the Healthcare Commission.

However, they decided the GPs involved in the cases were not to blame.

Mark Goldring, chief executive of the learning disability charity Mencap, which co-ordinated the complaints, said: “The ombudsman should have been more critical of the failure of GPs to obey disability and human rights law. We cannot agree with the ombudsman’s conclusions that some of the actions taken were acceptable because other doctors would have acted in the same way.”

However, he welcomed the overall findings, Goldring added, “in respect of the message to all health professionals that the rights of people with a learning disability must be respected, including their right to good quality healthcare”.

Phil Hope, the care services minister, said: “Preventable deaths of people with learning disabilities are absolutely unacceptable. We are taking action to ensure that people with learning disabilities get equal access to the healthcare that they deserve.

“The NHS is already improving the health of people with learning disabilities, with health checks and improved training for staff.”

Goldring added: “Although the reports are a big step forward for people with a learning disability, it is not the end of the journey for all the families. We will continue to fight for justice for the families.”