When @BBCNews feature on my live tweeting inquests aired [bbc.co.uk/news/av/uk-559… if you missed it] a number of people got in touch to share deaths they felt hadn't received sufficient public scrutiny.
A LD nurse got in touch to tell me about Julie Taylor. Please read on
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A LD nurse got in touch to tell me about Julie Taylor. Please read on
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I'll share publicly available information only.
I'll start with the Prevention of Future Death Report issued by Senior Coroner for Greater Manchester South Alison Mutch at the conclusion of Julie's inquest in November 2019 judiciary.uk/wp-content/upl…
[Commentary in brackets]
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I'll start with the Prevention of Future Death Report issued by Senior Coroner for Greater Manchester South Alison Mutch at the conclusion of Julie's inquest in November 2019 judiciary.uk/wp-content/upl…
[Commentary in brackets]
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Julie died on 23 September 2019 at Stepping Hill Hospital. The Coroner concluded Julie died from:
'Complications of the chicken pox virus contracted whilst awaiting discharge from hospital to a suitable rehabilitation facility'.
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'Complications of the chicken pox virus contracted whilst awaiting discharge from hospital to a suitable rehabilitation facility'.
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Medical cause of death:
1a) pneumonitis
1b) varicella zoster virus infection [chickenpox]
2) Downs syndrome; poor nutritional status
[We don't know how old Julie was but we do know she was an adult.
This is what her PFD report records as the circumstances of her death:]
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1a) pneumonitis
1b) varicella zoster virus infection [chickenpox]
2) Downs syndrome; poor nutritional status
[We don't know how old Julie was but we do know she was an adult.
This is what her PFD report records as the circumstances of her death:]
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Julie Helen Taylor had Downs Syndrome and consequential significant learning disabilities. She was resident at a residential care facility. Her care was funded and she required 24/7 support and was on a long term DoLS [deprivation of liberty safeguard].
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She had an allocated social worker and was under the care of the community learning disabilities team.
[We can see from PFD recipients Julie's social care was provided by @Derbyshirecc and @DCHStrust and she lived in a home run by Moore Care Ltd cqc.org.uk/provider/1-131…]
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[We can see from PFD recipients Julie's social care was provided by @Derbyshirecc and @DCHStrust and she lived in a home run by Moore Care Ltd cqc.org.uk/provider/1-131…]
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From June 2018 she began to consistently refuse to eat. Between May 2018 and August 2018 her weight dropped from 10st 3lb to 7st 10lb.
[I would have thought anyone losing 2.5 stone in 3 months would be a serious cause for concern that something was physically very wrong]
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[I would have thought anyone losing 2.5 stone in 3 months would be a serious cause for concern that something was physically very wrong]
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Two community Multi-Disciplinary Team meetings were held; one on 31st July 2018 and the other on 16th August 2018. On 31st July 2018 the possibility of a Community Treatment Review was raised.
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[I'm not sure what a Community Treatment Review is, but I suspect this refers to a Care and Treatment Review, or CTR england.nhs.uk/learning-disab…
'CTRs are for people whose behaviour is seen as challenging and/or for people with a mental health condition' info from @NHSEngland]
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'CTRs are for people whose behaviour is seen as challenging and/or for people with a mental health condition' info from @NHSEngland]
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[This seems to infer that Julie's health issues were immediately seen to be due to her mental health, we're not told in the PFD whether other tests were conducted by her GP to rule out physical causes. Let's hope they were]
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On 16th August 2018 the meeting concluded a learning disability hospital admission was required. This required approval. The Derbyshire facility was closed to new admissions and an out of area bed or an alternative was required.
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It was unclear what form this would take.
[Not clear from this who was in CTR, who needed to approve admission, or why, budget? Also why is acceptable for certain people, learning disabled or those with mental ill health, to have to be shipped out of area for healthcare].
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[Not clear from this who was in CTR, who needed to approve admission, or why, budget? Also why is acceptable for certain people, learning disabled or those with mental ill health, to have to be shipped out of area for healthcare].
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Julie Taylor continued to deteriorate and on medical advice was taken to Stepping Hill Hospital on 21st August 2018 with symptoms of dehydration.
[Julie's health is declining since May, her health needs are only met, eventually, with an acute admission due to dehydration]
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[Julie's health is declining since May, her health needs are only met, eventually, with an acute admission due to dehydration]
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She was accompanied by carers who gave a detailed account of her needs and situation. She lacked capacity. A reasonable adjustments care plan was not completed until 23rd August 2018.
[Why not? Julie had people who knew her well offering their advice, but nothing was done]
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[Why not? Julie had people who knew her well offering their advice, but nothing was done]
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It was recognised a side room would be a more suitable environment but one was not available. There was no clear multi-disciplinary discussion in relation to the decision.
[Why not? Why is so little care afforded to some people's needs?]
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[Why not? Why is so little care afforded to some people's needs?]
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Her nutritional status deteriorated further whilst in hospital. Between 21 August 2018 and her last documented weight on 8th September 2018 she lost 14 kilograms.
[That's a further 2 stone. In 2wks. In hospital. How does this keep happening to certain patients?]
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[That's a further 2 stone. In 2wks. In hospital. How does this keep happening to certain patients?]
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Her MUST score was 6. There was no referral to the nutritional Multi-Disciplinary Team. She was discharged by the Hospital Dietician Team whilst her weight loss continued.
[MUST Malnutrition Universal Screening Tool,
2+ High Risk malnutrition bapen.org.uk/pdfs/must/must… ]
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[MUST Malnutrition Universal Screening Tool,
2+ High Risk malnutrition bapen.org.uk/pdfs/must/must… ]
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[In May 2018 Julie weighed 10st3, in August 7st10, after 2wks in hospital she weighed less than 5 and a half stone. She lost 2.2stone/14kg in hospital in 2wks and was discharged from the @stockportnhs Dietician Team. Why? How?]
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There was no best interests meeting regarding her care in hospital.
[Why? Section 4 of 2005 Mental Capacity Act deals with Best Interests decisions when someone lacks capacity to consent for medical treatment legislation.gov.uk/ukpga/2005/9/s….
This is the law, a legal requirement]
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[Why? Section 4 of 2005 Mental Capacity Act deals with Best Interests decisions when someone lacks capacity to consent for medical treatment legislation.gov.uk/ukpga/2005/9/s….
This is the law, a legal requirement]
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She was not seen by a learning disabilities consultant until 7th September 2018. The review was conducted on information provided by the community psychiatrist that was limited and in parts inaccurate.
[18 days after admission. Inaccurate info. Is this appropriate care?]
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[18 days after admission. Inaccurate info. Is this appropriate care?]
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A diagnosis of moderate to severe depression was made and olanzapine and sertraline which had been stopped in the community in May 2018 were restarted. A meeting on 6th September 2018 agreed a Continuing Healthcare Assessment was required.
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There were ongoing discussions regarding a discharge destination.
[Hard to see what treatment Julie received in hospital. She continued to lose weight but was discharged from dietary team. Saw a LD consultant, whatever one of those is, after 18days, psychiatrist maybe?]
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[Hard to see what treatment Julie received in hospital. She continued to lose weight but was discharged from dietary team. Saw a LD consultant, whatever one of those is, after 18days, psychiatrist maybe?]
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[The focus before she was even seen by the consultant on 7/9 was on funding and discharge on 6/9. Julie was an ill learning disabled person without capacity, in hospital, not receiving nutritional services, losing weight, assessed for discharge before seeing any consultant]
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On 13th September 2018 whilst awaiting discharge she developed a rash. A specialist dermatology registrar on 14th September 2018 believe it was a reaction to medication. The medications were stopped. She deteriorated rapidly.
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[A specialist dermatology registrar who could not recognise a chickenpox rash. One can't help but wonder whether they were blinded by the fact Julie had Down Syndrome perhaps? It wouldn't be the first occasion of diagnostic overshadowing ever, I'll come back to this]
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She was deemed not fit for intensive care.
[I can't help wonder whether certain lives are deemed worth less than others, I suspect it would be argued Julie was too frail/weak for intensive care... but catch 22 having been discharged by a nutrition team]
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[I can't help wonder whether certain lives are deemed worth less than others, I suspect it would be argued Julie was too frail/weak for intensive care... but catch 22 having been discharged by a nutrition team]
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On 16th September 2018 her rash was identified as being chicken pox and anti-viral medications started. On the balance of probabilities the virus was contracted whilst an in-patient at the hospital.
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She showed initial signs of improvement following treatment but the lung damage from the virus infection was significant. On 23rd September 2018 she died at Stepping Hill Hospital from pneumonitis.
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Coroner's concerns:
During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths will occur unless action is taken. In the circumstances it is my statutory duty to report to you.
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During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths will occur unless action is taken. In the circumstances it is my statutory duty to report to you.
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1. The inquest heard that upon her admission to hospital the Emergency Department, where she spent a prolonged period of time, and Acute Medical Unit (AMU), had not recognised the need for a reasonable adjustment care plan to help them understand her complex needs.
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One was not put in place until she reached a medical ward. The trust had since her death taken steps to rectify the position and avoid it happening again. The inquest heard that it was unclear if nationally there was a clear understanding in Emergency Departments...
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...and AMU's of the need for reasonable care adjustment plans and the impact that lack of provision could have on delivering effective care to those with learning disabilities in an acute setting.
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2. No formal best interest(s) meeting was/were held whilst Julie Taylor was an inpatient at the acute hospital. Key decisions were taken regarding what tests to carry out; where to nurse her and whether to place her on End of Life care without the benefit of a BI meeting
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Decisions were taken with no rationale for them being documented in her notes. The inquest heard that the trust had taken steps to promote the use of best interests meetings/improved documentation in similar cases in the future...
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...but that nationally there was a lack of consistency around the use of best interests meetings/documentation of decision making and rationales for those decisions
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3. Prior to her admission to the acute hospital there had been ongoing discussion about her deteriorating condition and where her care needs could more effectively [be] met.
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The inquest heard that both in the community and subsequently in the acute setting there was a need for improved communication between agencies/ professionals to ensure a clear, consistent and effective plan was put in to meet the needs of those with a learning disability.
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In her case it was recognised at the end of July that a learning disability acute bed would be beneficial. Driving that forward was limited by a number of factors including communication between agencies involved
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4. The inquest also heard that a particular challenge existed where a need was identified for an acute learning disability bed. there was a very limited number of such beds available.
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In Derbyshire at the time of her need the unit had closed to new admissions and therefore any such bed would need to be sourced from outside the county from the limited number of national beds.
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The limited number of beds meant she may well have been placed many miles from her family and other familiar sights. The fact that one was not available in the county meant that she could not be moved straight away when the need was confirmed at a meeting in August 2018.
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5. Prior to her significant deterioration in the community the inquest heard that there was some communication between her community psychiatrist and the learning disability team.
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There was limited evidence of a joint approach between the psychiatrist and learning disability team where the prescriber in that team changed the medication. Her consultant was not present at the key meetings at the end of July/August and therefore...
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...a clear clinical steer from the psychiatrist was not available to the meetings. It was unclear what expectations there should be nationally around attendance and where a key member of the team could not attend how to ensure effective communication...
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...of their views before and after meetings
6. In her community care setting Julie Taylor had wraparound care provided by carers who knew her well and were trained to deal with someone with her profound needs.
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6. In her community care setting Julie Taylor had wraparound care provided by carers who knew her well and were trained to deal with someone with her profound needs.
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In the acute setting that level of support and care was not available. As a result she became distressed and increasingly less compliant with necessary medical interventions.
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The inquest heard that the issue of support that can be provided to those with a learning disability in an acute setting is not particular to the trust involved in Julie's death but a national one
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7. Julie Taylor was ultimately diagnosed with the chicken pox virus. The delayed diagnosis was in part due to the dermatology registrar not recognising the rash as chicken pox.
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The inquest heard that the reduction of chicken pox in the general population meant that junior doctors were less likely to recognise the rash and there could be a knock on delay in starting a person on anti-viral medications.
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This could be detrimental to their health and the eventual outcome as anti-virals were shown to have success in reducing fatalities in adults who contract the virus.
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There was no vaccination plan in place amongst the population with Downs Syndrome although the inquest heard they were more likely statistically to develop it
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8. The IT constraints meant that the acute trust could not access the community trust records. The community trust itself had not fully digitised meaning not all professionals could see each other's notes.
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The community trust recognised the internal issue and was taking steps to fully roll out an integrated system however communication between trusts digitally was unlikely to improve despite a recognition that it would be beneficial.
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[I had intended to tweet thread the responses but honestly I don't have it in me.
You can read this one here from @GM_HSC on behalf of @StockportNHS and detailing how 'learning will be disseminated across Greater Manchester' judiciary.uk/wp-content/upl… ]
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You can read this one here from @GM_HSC on behalf of @StockportNHS and detailing how 'learning will be disseminated across Greater Manchester' judiciary.uk/wp-content/upl… ]
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[You can read a response here from @Helen_Whately 'Minister with portfolio responsibility for learning disabilities'... that title alone makes my skin itch, her response much more so judiciary.uk/wp-content/upl… ]
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[I find the we've sorted the hospital out but nationally its a mess argument, pretty repulsive myself.
Last year I did another of these threads about someone else who died following 'care' at Stepping Hill Hospital. Someone else with a learning disability]
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Last year I did another of these threads about someone else who died following 'care' at Stepping Hill Hospital. Someone else with a learning disability]
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[In Julie Barrow's case the same hospital failed to complete a reasonable adjustment care plan, discharged her without resolving her issue. On readmission, no best interests meeting
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https://twitter.com/GeorgeJulian/status/1245289271528996865]
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[Julie's parents, in their 80s, stayed with her in hospital and staff expected them to sleep overnight in standard hospital bedside chairs. Dehumanisation of learning disabled people and their family members. Just grim.]
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[I'm not exactly sure where I'm going with this, if anywhere. Laura Booth's inquest is being held next month, she went into hospital for a routine eye procedure, and died 3wks later, her parents believe in part due to malnutrition]
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[Two years ago I live tweeted @JoeInquest he died in Manchester Royal Infirmary, the jury found due to neglect including 'failure to provide adequate nutrition' georgejulian.co.uk/inquests/joes-…
Why does this keep happening? Why?]
/END
Why does this keep happening? Why?]
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