Photograph: Mimgazer.

Hackney’s health and care agencies are being called upon to learn “critical lessons” after a review into the case of a woman with Down’s syndrome who died from complications related to scabies.

Jo-Jo, 38, who had been cared for by her mother, had lived in “considerable discomfort, irritation, pain and frustration” caused by Norwegian scabies for two years, which was only successfully diagnosed the day before she passed away.

Now a review into the tragic case says that she was “let down by a succession of gaps and omissions… on many occasions”, calling out a failure to properly assess Jo-Jo or her mother or provide a realistic treatment plan for her condition.

In concluding the safeguarding adult review (SAR) into her death, Ian Winter CBE said: “Jo-Jo was let down by the agencies that should have supported her health and care, and so too was her mother.

“Jo-Jo’s care was not impaired by the lack of resources, rather she (and her mother) were left isolated by poor and ineffective use of resources.

“It is difficult not to conclude that her learning disability played a part in these gaps and omissions, and so too perhaps the assumed social standing of her mother.

“Jo-Jo’s voice was not heard. There was no advocacy, contrary to the
requirements of the Care Act 2014. Her mother inevitably struggled to penetrate an unfathomable and disconnected health and social care system.

“It is not enough to state that ‘Lessons will be learned’. There are some fundamental issues of practice and process that must be addressed from this.”

Jo-Jo was seen by a variety of different agencies, including Hackney Council’s adult social care team, her GP practice, the district nurse team, the Homerton and the Royal London, as well as Goldsmith Personnel Limited, which provides community outreach workers.

The 38-year-old had been diagnosed in August 2013 with probable crusted scabies by dermatology outpatients at the Homerton, with her whole family receiving treatment for it later in the year.

However, Jo-Jo’s history of eczema led various GPs to misdiagnose her condition as eczema when it recurred in 2015, with the review finding that it appears that scabies was “not considered”.

Winter adds in his review: “Many simple straightforward
communications/basic activities were not carried out, no one sought to
coordinate care, good practice was ignored, and policy and current learning was ignored.”

The SAR goes on to state that “unrealistic and untested assumptions” were made about Jo-Jo’s mother’s ability to care for her daughter’s undiagnosed skin condition.

A former student of the Ickburgh School until the age of 19, according to the report, Jo-Jo (not her real name) “could be stubborn but more frequently was loving and gentle”, and an enthusiastic fan of music and dance.

It is underlined in Winter’s review that Jo-Jo’s mother “did her best” for her daughter, but was also heavily reliant on agencies in her case to fully advocate for her and meet all of her care needs, which included nutritional support, prompts to dress, the management of her finances and the maintenance of her personal relationships.

Jo-Jo’s condition deteriorated in December 2016, with the report finding that “quite understandably” the 38-year-old often tried to stop her mother from treating her.

Jo-Jo went into cardiac arrest shortly after admission to the dermatology department at the Royal London on 10 March 2017, with her cause of death attributed to a bacterial infection from severe scabies, with internal bleeding on her brain and in her sinuses.

The SAR, which was released in June in tandem with the findings of a learning disabilities mortality review (LeDeR), raises concerns that if different agencies could have worked together better, Jo-Jo’s death may have been avoided, or her pain analysed better and clinical engagement sought sooner.

Addressing an annual general meeting of Healthwatch Hackney (HWH), Amanda Elliot said:  “Healthwatch gets a lot of emails from families of young people with autism and learning disabilities in the borough, and the one thing that’s very common is around their access to health services, and the diagnostic overshadowing that takes place.

“This means that when someone has a learning disability, and may express pain differently, people don’t see the health condition, they see the diagnosis.

“There’s something deeply wrong when a woman with a learning disability is dying from complications from a skin condition in the 21st century. As a society it’s unacceptable. It’s an othering that takes place. People don’t actually see people with learning disabilities as having human rights.”

Jo-Jo’s mother told the LeDeR reiew that she was told by a consultant paediatrician in 1978, following her daughter’s diagnosis with Down’s syndrome at six weeks, that he daughter should perhaps be “put away”, but that “she would not have that”.

Jo-Jo’s father is said to have not “accept[ed] her condition”, with her mother determined to care for her, and doing so consistently throughout her life.

The LeDeR review found no evidence that a mental capacity assessment had taken place for Jo-Jo in the past two years despite a number of occasions when it could have been considered, “particularly in light of her mother appearing to have a limited understanding of Jo-Jo’s condition”.

District nurses were found to have visited Jo-Jo two months before her death, but there is no evidence that they took account of Jo-Jo’s learning disability, or of her understanding of the need to apply the prescribed creams, with no planned follow-up made to ensure treatment was being followed.

The LeDeR takes the view that: “Some of the decision making (or lack of it) from health and social care professionals might have contributed to Jo-Jo’s death.

“In particular, there was never any approach to risk assess Jo-Jo’s
mother’s capacity to competently look after Jo-Jo’s complex skin condition
which would have included providing a clean environment, ensuring adequate personal hygiene and regular application of topical medications.”

Responding to Elliot’s remarks at the Healthwatch meeting, Dr Adi Cooper, independent chair of the City & Hackney safeguarding adults board (CHSAB), said that “some of the issues” brought up by Healthwatch were present.

CHSAB is now making recommendations speaking directly to changing the way people with learning disabilities are “cared for and listened to and understood”, in response to cases in which what is “seen” is the learning disability, rather than the physical health need.

The board is now understood to be looking to see how the behaviour of frontline staff changes in response to their recommendations, and what happens as a result that shifts the way people are treated and seen.

Recommendations are also being made on “professional curiosity”, calling on health and care workers to ask questions betwee agencies about why things are or are not happening, escalating concerns why they do exist and not assuming that someone else has reported them.

More support for carers is also called for through a “Think Family” approach is called for in the outcome of the SAR, in which key agencies proactively look at a whole situation and the carer’s experience to understand things from their perspective.

Dr Cooper said: “This SAR is so important, as it is not just about a referral system that didn’t work, but brings up a range of issues about how people are seen and worked with, and what’s seen as important or not.

“SARs are always distressing, and show us what we need to learn. This is not something that will change overnight, but will prompt changes on a longer-term basis.

“The CHSAB was very sorry to learn of the circumstances surrounding JoJo’s death.

“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 LeDeR review, which looked into the role of health services has been carried out, alongside the SAR 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.”   

Cllr Feryal Clark (Lab, Hoxton East & Shoreditch), cabinet member for health, social care, leisure and parks, who also spoke on behalf of City & Hackney clinical commissioning group, said: “The circumstances around JoJo’s death are truly heartbreaking.

“There are vital lessons for all agencies involved including the council about ensuring health and social services do not fail our most vulnerable residents.

“The council and its partners have carried out individual reviews and all of the recommendations from the CHSAB are being delivered by all agencies.”

EDIT – This article was amended at 10:31 on Friday 26 July to make clear that Cllr Feryal Clark was speaking on behalf of both Hackney Council and City & Hackney clinical commissioning group.

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