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.”
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As the mother of the 33 year old man I can assure you that Richard was not referred to as James to protect HIS annonymity. We begged for the report to be published in his name. We said”he was denied dignity in life so please give it to him in death.” We were overruled!
George Osborne should read this before deciding how much he wants to cut from Local Authority budgets. How many more deaths like this does he think are acceptable?
Shocking that staff on duty weren’t monitoring bowel movements when this was a known problem! A total waste of a life.
No doubt the chemical cosh being misused for such adults heavily contributed to these deaths alongside the utter negligence.
But still no clarity over these health issues as to who the named care coordinator should be – Health or Social Care? Lack of specifics does not help, in terms of delineating respoinsibility.
Who is being held accountable for these deaths? Multi agencies gathering together to decide they were incompetent for years following needless deaths must be held accountable. They should lose their jobs as they’ve failed utterly. It’s no longer good enough to bleat out excuses after a person has died a death by indifference. People with learning disabilities are continuing to suffer painful and terrible slow deaths because those charged with protecting them can’t do their jobs. Their health care is neglected because they aren’t offered NHS healthcare which the rest of us take for granted. Negligence on this scale deserves nothing less than a prison sentence.
Absolutely appalling!!! Allocated care coordinators is how services were provided several years ago. The closure of long stay hospitals allowed for extra LD nurses to move to the community teams. A lot of counties have joint social and health teams which allows for close working and sharing of knowledge, support and skill for any person or service that needs it. However the past 4 years in or so has seen at least 2 reviews of social work teams in our local area (Norfolk) and now a review of specialist LD health teams. This leaves a vulnerable client group more vulnerable and support providers with less support from the expertise of the specialist health workers. Experienced qualified LD nursing staff retiring have no one to hand their knowledge local and otherwise over to. There will be more cases like these sadly before someone worries less about savings and more about appropriate services and value for money.
I had bowel problems from being a baby until I was 13
A saw a paediatric consultant regularly, who put it down to laziness.
Luckily for me, my GP retired and was replaced by a new one that had recently finished his training, he recognised the problem at my first visit. He quickly arranged surgery, which resolved the issue. I had to suffer 13 years of the problem, just because it was not diagnosed.
This is the problem that people with a mental disability suffer, if they are not checked or monitored by a specialist, the problem is not picked up.
I was interviewed on BBC radio last week about the current care crisis in Norfolk, prompted by a lack of support given to the mother of a young person with learning difficulties. I explained that the system was in crisis and highlighted the risks of using a ‘pool’ of social workers rather than having a dedicated social worker/care manager with responsibility for named patients/clients. A SW/Care Manager who has knowledge of the person’s history and condition is faster and safer than having someone pick up the file of a person he/she does not know. There may well be a complicated history (physical and mental health) so this practice must end, it is unsafe and inefficient. It does not save money and can destroy lives.