Council breached Care Act in case of woman who died of scabies-related complications, review finds

Safeguarding adults review finds series of assessment failings that directly contributed to woman with learning disabilities and her mother receiving inadequate care


A council breached the Care Act 2014 by failing to properly assess a disabled woman who died following complications related to scabies, a safeguarding adults review has concluded.

The review into the death of Jo-Jo, a woman with Down’s syndrome and a severe skin condition, found Hackney Council practitioners did not consider the wellbeing principle or the need for advocacy support, both requirements under the Care Act, in its assessment of her.

It also found the council in breach of the act for not completing a carer’s assessment for Jo-Jo’s mother, her main carer, and instead assuming that she was ‘managing’, a reflection of agencies’ unrealistic expectations of her mother’s capacity to manage Jo-Jo’s deteriorating skin condition.

History of case

Jo-Jo had been known to Hackney social services since March 2007, needed support with personal care, nutrition, managing her finances and maintaining relationships, and had a history of severe eczema, covering her whole body.

In 2013, she was diagnosed and treated for crusted scabies. However, when her skin condition worsened in 2015, health professionals misdiagnosed it as eczema, missing the correct diagnosis of Norwegian scabies.

As a consequence, Jo-Jo’s skin condition persisted “with what was inevitably ineffectual and inadequate treatment”. On 9 March 2017, a GP visiting Jo-Jo at home diagnosed Norwegian scabies and arranged an emergency dermatology appointment for the following day. However, she died shortly after arriving in hospital the next day, with a post-mortem concluding that the causes of death were a bleed in the brain, a blood clot in the sinuses and an infection related to severe scabies.

Cancelled services 

The review found that, from October 2015 onwards, Jo-Jo received weekly support from a care agency, commissioned by the council’s integrated learning disability service, to access the community, while support to maintain personal care was provided by her mother.

However, on a number of occasions the care agency, or Jo-Jo’s mother, cancelled the service because of a deterioration in Jo-Jo’s health and her skin conditions.

In June 2016, the council completed an assessment, which “seemed to relate to a request” from Jo-Jo’s mother for respite, the review found. The assessment did not take a personalised approach and was inadequate in fulfilling the requirements of the Care Act.

The following month, a support plan was drawn up, which set out the continuation of the support service, and respite. However, this was never signed by Jo-Jo or her mother.

‘Ignored outcomes and a mechanistic assessment’

“It is difficult to justify having an integrated service if outcomes for individuals are seemingly ignored and the assessment is reduced to a somewhat mechanistic process, apparently to justify whether expenditure on services can be authorised,” the report said.

It added that “the starting point is the care and outcome for the individual” and the requirements of social care should not be “diminished to a purchasing equation only”.

On the day of Jo-Jo’s death, ambulance staff made a safeguarding alert because of concerns about Jo-Jo’s home environment, and a coroner’s report found that her body was in a “neglected state”.

The review found that there were there are no indications that Jo-Jo was being deliberately neglected nor that she was being cared for inappropriately in relation to areas other than her skin condition.

However, the review found, “the almost overwhelming complexity and scale of Jo-Jo’s increasingly rampant skin condition” meant safeguarding action should have been considered earlier to ensure her condition was treated adequately. Instead, Jo-Jo’s mother, who supported her daughter as best she could, was “left to get on with it”.

Parallel review

The safeguarding adults review was carried out alongside a mortality review by the LeDeR programme, which looks at the premature deaths of people with learning disabilities.

The LeDeR review concluded that some of the decisions (and omissions) from health and care workers may have contributed to Jo-Jo’s death, particularly because they did not risk assess her mother’s capacity to competently look after her skin condition, the report said.

Both reviews noted that Hackney Council’s learning disability service ‘never considered’ assessing mental capacity, even though it should have at various points. Instead, it was assumed that she lacked capacity to make decisions about her care and that her mother would make best interests decisions on her behalf, probably as a result of knowledge of her condition and her mother’s descriptions of her reasoning.


The review recommended that Hackney’s learning disability service “urgently review” its assessment document to ensure that it meets the needs of personalised care for people with a learning disability, specifically considers risks, safeguarding and “the voice of the individual”, and meets Care Act 2014 requirements.

It also said that, when the learning disability service commissions care, there needed to be clarity about the purpose of the service, monitoring arrangements, clear expectations of the provider and follow-up when significant changes were made, especially cancellations.

Adi Cooper, independent chair of the City and Hackney Safeguarding Adults Board, said the board was “very sorry to learn of the circumstances surrounding Jo-Jo’s death”.

She said: “There are critical lessons for all agencies involved, to ensure that health and social services for adults with learning disabilities, are improved to minimise the risk of harm, abuse and neglect. A Learning Disability Mortality Review, which looked into the role of health services, has been carried out to ensure all of the gaps are identified.

“In addition, all agencies have undertaken individual reviews to identify learning and development for their own organisation and as part of the wider safeguarding partnership. All of the recommendations are being fully implemented and I hope this review will ensure agencies work better together to ensure no vulnerable adults slip through the net.”

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