This is the second post of three relating to Prevention of Future Death Reports issued in 2023 relating to the deaths of autistic people, the first can be found here.

Jessica Eastland Seares was 19 when she died at Millview Hospital in Hove in May 2022. You can read my reporting of Jessie’s inquest, and more about who she was here in the posts linked here. The jury at her inquest recorded a narrative conclusion:

It is the conclusion of the Jury that systematic failures in Health and Social care led to a series of events, which caused the deceased periods of dysregulation culminating in regular bouts of self-harm, which ultimately ended in death by misadventure.

The Senior Coroner for West Sussex, Brighton and Hove, Penelope Schofield recorded that Jessie was autistic and had been diagnosed with ADHD, Complex Traumatic Stress Disorder and Emotionally Unstable Personality Disorder. [The EUPD diagnosis was one that Jessie and her parents disagreed with].

Jessie was living in the community with support, but that support package broke down, and following that her mental health deteriorated and she was detained in hospital in March 2022 until she died.

In identifying the matters of concern, the coroner stated:

Sadly this case exposes the total inadequate level of community provision for the care and treatment of those with suffering with Autism. This is a national problem and sadly leads to many experiencing unnecessary admissions to inpatient mental health facilities and also A&E attendances.

She also commented that this appeared to be no improvement on the situation highlighted in a Parliamentary Health and Social Care Committee report published in 2021 and warned that more lives were likely to be lost, in the PFD which was sent to the Secretary of State for Health and Social Care at the Department of Health:

Reading from this report, it says “The conclusion of this report was that Autistic people (and people with learning disabilities) have the right to live independent, free, and fulfilled lives in the  community and it is an unacceptable violation of their human rights to deny them the chance to do so.”
 
The report identified that “the community support and provision for autistic people (and those with learning difficulties) and financial investment in those services is significantly below the level required to meet the needs of those individuals and to provide adequate support for them in the community“.
 
The Inquest heard that two years on there still remains an acute shortage of provision. Evidence was heard that East Sussex Council had tried over 30 providers to help put in place support for Jessie but they could not find a placement for her so the only provision that they were able to offer her was supported housing with temporary care agency staff. This provision broke down which exacerbated Jessie’s mental health. This then led to a hospital mental inpatient admission.

Lauren Bridges was a 20 year old autistic young woman who died at The Priory Cheadle, in February 2022. Two Prevention of Future Death Reports were issued after her death by the Assistant Coroner for South Manchester Andrew Bridgman, one to the Secretary of State for Health and Social Care, and one to Dorset Healthcare NHS Trust.

The jury at Lauren’s inquest found she died as a result of misadventure and that she had not intended to die by suicide. They identified that she had been harmed by the care provided to her and her health deteriorated as a result (iatrogenic deterioration), and also that a failure to discharge Lauren to a more appropriate setting, closer to her family, were contributing factors to her death.

Missed opportunities for moving Lauren closer to home with acute and PICU beds available during significant periods between July 2021 and February 2022 at St. Ann’s, Seaview and Haven wards, contributed to increased incidents and her death.

The prolonged stay in a PICU placement in Priory Cheadle led to iatrogenic deterioration. This was prolonged by a delayed discharge. There was inadequate communication about Lauren from Dorset Healthcare NHS Trust to relevant parties, and there was insufficient communication about Lauren from Priory Cheadle to relevant parties.

Dorset Healthcare NHS Trust did not recognise the exceptional circumstances of the effects on Lauren being in an out-of-area placement over 260 miles away from home.

Lauren lived in Bournemouth, yet she died 260 miles from her home in Manchester. Lauren was detained under the Mental Health Act in March 2020, moving to a rehabilitation unit ran by The Priory in Dorking in January 2021. That placement was 100 miles from her home and commissioned by the Dorset CCG.

Six months later Lauren’s mental health deteriorated and a decision was made in July that she should be transferred to a Psychiatric Intensive Care Unit, also run by The Priory. Lauren was moved to Pankhurst Ward PICU in Manchester on 23 July 2021. Lauren was now 260 miles from her family, in a placement commissioned by Dorset Healthcare NHS Trust.

Less than six weeks later, on 2 September 2021, it was agreed that Lauren was ready to leave the PICU and move to a less intensive ward. The coroner notes that the plan was to find an acute bed in, or closer to, Bournemouth, while a rehabilitation unit place was found for Lauren.

Lauren died just short of 6 months later. She had not been moved. The coroner stated that in that time Lauren’s mental health had deteriorated with an increasing number of incidents of self-harm. The PFD states that “A major factor in Lauren’s deterioration was the distance from her home and family”.

The coroner raised concerns relating to two matters to the Secretary of State, the damage caused by delayed discharge especially to patients held in hospitals miles from their homes, and communication between commissioners, providers and other parties.

This is the second inquest I have heard where the delayed discharge/repatriation of an Out-of-Area patient from an independent provider’s hospital has been a contributory factor in that patient’s death. Lauren was 20 years of age. The other inquest involved a 15 years old patient – 115 miles from home.

Both of these cases illustrate,
a)       Underfunding for local mental health beds.
b)       An over-reliance by the NHS on independent providers for mental health beds.

The Government set itself a target to eliminate inappropriate (which I infer would include delayed discharge) Out-of-Area in-patient placements in mental health services for adults by 2020-21.

In his PFD issued to Dorset Healthcare NHS Trust the coroner said that it was apparent that their standard of record keeping was inadequate.

During the course of the inquest it was apparent that Dorset Healthcare NHS Trust’s standard of record keeping was inadequate. Among other things

* Lauren’s name did not appear on the Out-of-Area Hospital Overview document until 19.11.21 and then she was listed in as being in an acute bed not a PICU.

* There was a complete absence of records of purported discussions with regard to allocating/denying Lauren one of the many beds available over the 5 months following her readiness for step-down to a rehabilitation unit and readiness for repatriation to a local bed in the interim.

He recorded that the Trust had made the following admission during the course of Lauren’s inquest:

Dorset Healthcare NHS Trust have admitted that there were shortcomings in its systems for recording the identity and relevant circumstances of its out of area patients, and in its processes for assessing those patients when a bed becomes vacant. As a result, there may have been missed opportunities to offer Lauren a bed.

He said that the Trust had not been able to provide a witness to deal with this issue and had informed him of their intention to “carry out a further review upon conclusion of the inquest”. He stated that the matters of concern for the Trust were:

a) the omission to update the Hospital Overview timeously and correctly.

b) it can be inferred from the absence of any documentation regarding discussions about Lauren’s repatriation to an available bed that no such discussion took place.

Lynsey Smalley was 42 when she died in May 2021. She lived at home with her brother who was her primary carer. The Senior Coroner for North West Wales, Kate Robertson states “She had a past medical history of mixed schitzotypal and emotionally unstable personality disorder with traits of Asperger’s syndrome”.

Lynsey’s inquest concluded with a narrative as follows:

On the 8th April 2021, Lynsey Sarah Smalley deliberately set fire to her bed at her home address during an acute psychotic episode. The smoke from the fire caused inhalation injury which led to her admission to the Intensive Care Unit at Ysbyty Gwynedd, Bangor. Lynsey Sarah Smalley remained in the intensive care unit for several weeks with poor respiratory progress. She did not recover from her injuries and died at Ysbyty Gwynedd, Bangor on 16th May 2021. Given her psychotic episode it cannot be said that she intended to end her life by causing the fire.

The coroner identified a number of matters of concern. She stated that the (Betsi Cadwaladr University) Health Board had provided three investigation reports into Lynsey’s death, two of which contained conflicting evidence.

It is clear that there was no strategic plan or collaboration in governance processes. Furthermore, there were a number of proposed actions which took nearly two years to identify and complete. The time it took to identify and complete actions, together with governance processes are matters which I have raised previously with the Health Board in previous Prevention of Future Death Reports. If there are such disjointed patient safety and governance processes learning will not be effective and deaths will continue to occur or will occur into the future.

She also raised concerns about information sharing between individuals and organisation providing support to patients, and the risk of paper notes being lost when they are transferred from the Community Mental Health Team to the hospital setting if someone requires inpatient treatment.

Having medical records electronically will not only allow full access to all notes to those who require which will inform future care/treatment but will also ensure effective continuity of care, without the risk of missing or lost notes. I have previously issued a Prevention of Future Deaths Report on this point, a copy of which was also sent to [REDACTED] , Health Minister.

Molly-Ann Sergeant was 17 when she died by suicide in October 2020. I was unsure whether to include Molly in this list as she did not accept her diagnosis of autism, however I have included her given the failings identified.

The coroner for Essex, Sonia Hayes recorded that Molly had been treated for depression and had a history of chronic self-harm that required a prolonged hospital admission under the Mental Health Act at the St Aubyn’s Unit.

Molly was discharged on 17 August 2020 following phased community leave with a plan in place for her mental health. Confusion between different statutory provisions led to her case being closed to social care and, significant delays in this case being reopened. Molly was allocated a social worker five weeks after her discharge for an assessment that was ongoing. Molly attended her Care Programme Approach meeting on 9th October 2020 and left distressed.

Suicide – Social care failed to carry out appropriate requested assessments during Molly’s prolonged hospital admission and there was not a coherent co- ordinated approach to meeting Molly’s social aftercare needs. Molly’s right to aftercare services was recorded but the functions were not discharged as they should have been during her admission, and this contributed to her death.

The coroner identified six matters of concern, including:

1. a delay in Molly’s autism diagnosis
2. insufficient assessment for discharge planning given Molly’s recent diagnosis of autism
3. insufficient consideration of the impact of Molly’s delayed diagnosis of autism on her chronic high risk of suicide, on a background of Molly not accepting her diagnosis
4. lack of escalation to Essex County Council when there was no response to request for assessment/attendance at discharge planning meetings, resulting in the key worker/care coordinator “carrying too heavy a workload as a consequence”
5. Essex County Council did not act on appropriate referrals, conduct required assessments of Molly, appoint a social worker until after Molly was discharged. “There was a lack of understanding of the impact of Molly’s detention on her right to assessment as a child in need and how this changed during her detention under the Mental Health Act”.
6. a lack of understanding of Molly’s section 117 Mental Health Act rights and consideration of Molly’s needs in relation to her mental health disorder by the council
   • a.     compelling Molly to choose between family members as part of her discharge planning and then as a consequence changing Molly’s status during her detention from homeless.
   • b.     Lack of assessment for any s117 needs to facilitate discharge.
   • Lack of appreciation of the impact of Molly’s autism diagnosis in a background of chronic suicide risk on decision-making and Molly’s potential to understand the decisions being made.

Coroner Hayes sent the PFD to Essex Partnership NHS Foundation Trust and Essex County Council.

Morgan-Rose Hart had turned 18, and was moved to adult services, a few weeks before she died in July 2022. She was autistic and had ADHD, social anxiety and body dysmorphic disorder. She loved animals and wanted to be a vet. The Essex Coroner Sonia Hayes found that Morgan-Rose died from misadventure contributed to by neglect.

She identified a number of failings in the care provided to Morgan-Rose, including:

• her transfer to adult services not being supported enough
• when she was moved to Chelmer Ward (an adult ward at the Derwent Centre) Morgan-Rose’s “medical history, diagnosis and triggers including her communication passport were not filtered down to staff who were tasked to providing her day-to-day care”
• her triggers and changes in behaviour not being observed or documented whilst her mental health was deteriorating
• limited therapeutic engagements/attempts to engage with Morgan-Rose

The coroner noted that most of Morgan-Rose’s observations were conducted via the Oxevision system (the exception being Level 3 observations where she was required to be in eyesight of staff). The coroner stated that staff falsified observations leading to Morgan-Rose not being checked and feeling that staff “did not have time for her”.

On the day Morgan-Rose self-harmed, leading to her death almost a week later:

critical observations were missed, Oxevision alerts were muted or reset without the correct procedures being adhered to, contributed to Morgan-Rose being left unattended in her bathroom for approximately 50 minutes after the Oxevision red alert was reset on display 01.

The coroner recorded that Morgan-Rose, who was “known to mask her behaviours”, had stated she did not want to die, however she was at high risk due to self-harm.

When reduced to Level 2 and Level 1 observations the correct risk assessments including room checks were not completed. Resulting in restricted items being easily accessed. This increased the risk of self-harm. The failure of basic protocol and procedure documented by Essex Partnership University NHS Foundation Trust resulted in Morgan-Rose Hart dying by Misadventure Contributed by Neglect.

In the Prevention of Future Deaths Report, sent to Essex Partnership University NHS Foundation Trust and Essex County Council, the coroner identified a number of matters of concern, 6 for the Trust:

1. The Trust investigation was materially incomplete and there was a lost an opportunity to:
a. Understand concerns of the Family
b. Acknowledge errors and learn lessons from the circumstances of the death. The Director of Operations and Matron informed the Trust Senior Management that the PSII Report had omissions. The Trust evidence was that it was an early adopter of the new NHS investigation process. The lead investigator did not report on material issues as to how Morgan-Rose was observed on the ward and the report was significantly delayed. Evidence was there was a pressure to sign the report off although it remained incomplete and did not contain a note about the limitations.
c
d. Escalate concerns about staff observations – About 2 weeks after the death the Matron received a report that staff observations had not been appropriately conducted. This prompted a review of CCTV from the afternoon of Morgan-Rose’s death. There was insufficient scrutiny of the CCTV that showed that multiple observations entries made on 6 July 2022 after 14:06 hours could not be correct.
e. Understand security issues on a locked mental health ward – It has not been possible to establish the identity of the person that reset the bathroom alert triggered for Morgan-Rose on 6 July 2022 at 15:31. The Trust does not have an accurate records of Trust staff pass allocation. The Trust investigation did not establish that staff borrowed each other’s security passes. On the day of Morgan-Rose’s death a visitor pass issued that had access to the nursing office. The Trust was unable to provide the identity of this person.

2. There was a dispute in evidence over whether it was or was not permitted for patients to have belts on Chelmer Ward, that has not been resolved.
a. Morgan-Rose was on 1:1 observation due to her high risk of self-harm that including ligaturing and a belt was in her possession
b. The Responsible Clinician and a Ward Manager providing support to staff gave evidence at that time that belts were not permitted
c. The Trust senior management stated that belts were permitted and referenced the policy. The Updated ward documentation ‘Handover Checklist’ approved in October 2023 contains belts on a list of prohibited items. The Trust has stated that this is not correct although this was part of the After-Action Review and is in current use.

3. Escalation of risk – Morgan-Rose attempted to secure unescorted leave on the morning of her death, her Responsible Clinician had only authorised escorted leave. This was not escalated to the nurse in charge and the Responsible Clinician was not informed.

4. Bathroom alerts – Evidence was heard that an Oxevision alert is triggered if a person is in the bathroom for more than 3 minutes and staff are required to complete an in-person check. Morgan-Rose was left in the bathroom unobserved for approximately 50 minutes. It was not clear from the evidence how the Trust proposes to ensure compliance in respect of this duty.

5. Trust oversight of care – the quality of record keeping was acknowledged not to be appropriate by nurses and senior staff during evidence, yet had been signed off:
a. Observations sheets for vulnerable detained mental patients were signed off by nurses in charge as being appropriate despite an absence of any recorded therapeutic engagement
b. Omissions in the recording of food and fluid charts required by the Responsible Clinician for a patient who was losing weight with a diagnosis of Body Dysmorphic Disorder.
c. The Responsible Clinician’s evidence was that the absence of appropriate food and fluid charts for other patients was an ongoing issue on Chelmer Ward that had been raised with nursing staff

6. Staff entries in patient observations sheets should have given rise to a concern that some staff may have been using Oxevision not just as an adjunct to face-to-face observations, but instead of them. This remains a concern.

The matter raised to Essex County Council, was one we have seen in numerous Prevention of Future Death Reports:

There is a significant shortfall of appropriate placements for people with Autism who have mental health and self-harm risks in Essex both inpatient and the community.