Call for learning disabled adults to get named care coordinators

Adult protection experts have called for learning disabled adults to be given a named care coordinator and have their health and social care needs jointly reviewed at least once a year, after analysing the circumstances surrounding two patient deaths.

Margaret Flynn, who carried out the Winterbourne View serious case review, and fellow safeguarding expert Ruth Eley, made the recommendation in serious case reviews of the deaths of a 33-year-old man and 52-year-old woman. The reviews, carried out for Suffolk Safeguarding Adults Board, found failings in the way health, social services and care providers monitored both patients’ physical health needs.

In both cases, agencies also showed a lack of understanding about use of the Mental Capacity Act when making critical decisions about physical healthcare, diet and behaviour, the reviews found.

Lack of physical health monitoring

Richard Handley had lifelong problems with constipation which were exacerbated by his Down’s syndrome and medication.

He died on 17 November 2012, three days after being admitted to hospital from a supported living unit. While at hospital, he underwent surgery to remove impacted faeces after his condition deteriorated.

The serious case review referred to Richard by the alias ‘James’ for ‘reasons of anonymity’ but his family have shared his identity and said they’d asked for his real name to be used in the report.

The review said it was “shocking” that a 33-year-old man had died at a time when people with learning disabilities may expect to live longer lives than previous generations. It found Richard’s health was only reviewed regularly by a psychiatrist, with passing reference made to his physical health. Opportunities to review his health needs through an annual health check, a social work-led review and a dementia assessment, were also missed.

The review highlighted how Richard’s accommodation became a supported living unit in 2010, after de-registering as a residential care home. This was significant “at several levels”, including the fact that no specific arrangements were made for the supported living scheme to have access to specialist learning disability services despite all of its tenants having complex needs.

“The lack of such specific requirements, the weakness of the care management review process and the inappropriate approach to annual health checks meant that [Richard’s] health care needs were neither monitored nor reviewed beyond the limited and questionable input of psychiatry,” the review concluded.

Julie Say, a solicitor representing the Handley’s, said the family were shocked by Richard’s “sudden and unexpected death”.

“The family are relieved that the report is, after such a long time, finally complete. Many failings have been identified and we now hope that the forthcoming coroner’s inquiry into the circumstances of Richard’s death will improve the standard of care people with learning disabilities receive in Suffolk and beyond, and prevent events such as these ever happening again,” she said.

‘No-one took the lead’

The woman, referred to in the report as ‘Amy’, had learning disabilities, epilepsy and known bowel problems. She lived in a supported living scheme where concerns about the staff’s understanding of her health needs prompted a safeguarding referral in January 2013.

Amy was re-admitted to hospital on 6 April with breathing problems, having been discharged earlier that day. A further safeguarding referral was made after concerns about the discharge taking place without full investigation of her health problems. Amy’s condition deteriorated and she died in hospital on 7 May 2013.

The review into Amy’s death highlighted a lack of multi-disciplinary attention to her needs. She had no designated care co-ordinator and no-one took the lead in ensuring professionals and agencies shared information with one another. There was also an “over-reliance” on unqualified staff working at the supported living unit to monitor her needs, the review found.

The reviews recommended the safeguarding board seek assurances from commissioners and providers that all adults with learning disabilities have a named care coordinator and get their health and social care needs jointly reviewed at least annually. It was also recommended that improvements were made to services’ standards of record keeping and communication with people’s families and representatives.

Tim Beach, the chair of Suffolk Adults Safeguarding Board, said: “These are two very sad deaths and, as throughout this whole process, our thoughts are with the families who have lost loved ones.

“As a board we need to be assured that adults with learning disabilities and complex support needs have a future named care co-ordinator and that their health and social care needs are jointly reviewed on at least an annual basis.”