A young man with diabetes died after he “dropped through just about all the gaps possible”, councillors have heard.
The case, which involved an 18-year-old boy known as Child T, was discussed at a meeting of East Sussex County Council’s people scrutiny committee on Tuesday (September 15).
Councillors heard how the boy and his mother had both neglected the care of his Type 1 diabetes to a “shocking” level, frequently missing appointments with healthcare professionals and failing to regulate his insulin properly.
A serious case review found there had been a number of missed opportunities to intervene in his case by a wide range of professional services.
A report following a serious case review reads: “Child T was an unwell, isolated and neglected young man.
“When he was admitted to hospital the level of self-neglect and neglect from his caregiver shocked those involved. Opportunities to provide preventative services were largely missed prior to his admission to hospital.
“There was a lack of professional persistence and awareness, particularly in light of mother’s apparent lack of willingness to accept help.
“Safeguarding concerns were not identified until Child T was an adult and was admitted to hospital in a very poor state.
“Despite death being a known outcome of poorly controlled diabetes, while he was in hospital there was insufficient awareness of the gravity of this case by inpatient health care services to anticipate that his death was a real possibility.”
The boy was admitted to hospital in February 2017 when he was 18-years-old. On admission he was described as being “in an extremely poor state, both physically and emotionally” which “indicated severe neglect which had started during his childhood.”
While in hospital he had repeatedly refused treatment and check-ups. He died unexpectedly in May 2017 as a result of conditions connected to his diabetes. He had been in hospital for more than three months.
Although he had left education at the time of his death, the serious case review found that signs of his ill-health and neglect had been present for some time, including when he was in secondary school and college.
These signs included “extreme weight loss”, with his weight falling from at least 18 stone at the age of nine, to nine stone when he was 14-years-old. He weighed only seven stone when admitted to hospital.
He was also diagnosed with nerve damage in July 2015, which was attributed to a lack of compliance with his diabetes care but not recognised as potential sign of neglect
An anonymous call was also made to child social services raising serious concerns about his welfare around the same time.
Despite these signs, the report found the boy was “effectively invisible to services for much of his teenage years”.
The serious case review made a number of recommendations to reduce the possibility of a similar situation in future. They included new guidelines for schools and healthcare professionals about diabetes care.
The review read: “The need for communication from and to health professionals when a child or young adult has a serious health condition was a key finding of this review.
“In this case Child T was not as visible to the agencies with a responsibility for him as he should have been when he was living at home.
“When he was an inpatient and seen every day he was inappropriately assessed and supported.
“There was a lack of focus on his lived experience, limited understanding of his relationship with his mother and carer, and no clarity about his capacity to care for himself going forward.”
The findings and recommendations of the serious case review were discussed by East Sussex County Council’s people scrutiny committee on Tuesday (September 15).
Cllr Francis Whetstone (Con, Forest Row and Groombridge) said: “This seems to me to be a classic case where – usually not as many agencies as this one – you’ve got more than one agency involved [and] the problem falls through the gaps.
“What we have got to do is get a better system so that possibly it remains a joint responsibility and people don’t push it off to somebody else who doesn’t know what to do with it.
“It just seems that in each case [responsibility] has just been moved and it has never really been taken on wherever it has been moved to.
“It is a very, very sad case. For him to have lost the amount of weight that he did and nobody to have done anything much about it, it is very upsetting.”
The committee’s chairman Cllr Anghared Davies added: “I think there is some blame here. This was a serious health issue and the primary care involvement was nil, practically nil.
“[The review] makes points about schools being more aware of this type of illness, but in my experience they are quite clued up about diabetes. I think the reasons the schools didn’t help was that the child wasn’t there.
“When somebody becomes invisible to services like this child was invisible, we have to be more careful, we have to be more curious and take it more seriously.”