This weekend I finished reviewing the 11 Prevention of Future Deaths Reports that I had identified were issued to people with a learning disability in 2023. I did that across four blog posts, the first of which included an introduction to what a PFD Report is and when it is issued. You can read those posts here, here, here and here.

In this post I’ll discuss five of the 15 reports that were issued relating to autistic people. As I mentioned in my last post this is a crass distinction and there will almost certainly be some people in this post who had a learning disability and perhaps some in the posts I’ve reviewed already who were autistic. The information given in PFDs is also limited so there will almost certainly be some learning disabled and autistic people who I have not identified at all. Where it is mentioned that someone was awaiting assessment or being assessed for autism at the time of their death I have included them in this list.

I have omitted some details about the circumstances surrounding people’s deaths because a large number relate to people who died by suicide or self-harm, and I’m mindful of Samaritans media guidance. Each name links to the Prevention of Future Deaths report on the Ministry of Justice website if people wish to read more.

Before I start I wanted to mention the work of Ruth Clegg at the BBC. Ruth has been covering the care provided to autistic people and those with learning disabilities for years. Over the years we have had numerous conversations about PFDs and whether they’re serving their suggested purpose. You can read the report that Ruth coordinated and published last autumn here. Ruth and her colleagues examined ten years of PFD reports, identifying 51 occasions where PFDs “described serious failings in the care of autistic people, and health and social care bodies were urged to take action to prevent future deaths”. If you have read Ruth’s report, what follows will hold no surprises.

In this post I’ll cover the first five reports, alphabetically.

Amarnih Lewis-Daniel died aged 24, in April 2021. Amarnih died from a fall, and the jury found “The evidence does not fully disclose whether she intended the outcome to be fatal”.

The Area Coroner for East London, Nadia Persaud, recorded in the PFD:

She was under assessment for autism spectrum disorder. Amarnih had been referred to the gender identity clinic in August 2018. The inquest heard evidence that Amarnih had suffered bullying and abuse, causing her a great deal of distress. She reported to professionals that she was keen to be accepted by and to receive treatment from the Gender Identity Clinic.

The coroner identified five matters of concern including waiting lists for accessing Gender Identity Clinics (average wait time of 7 years in September 2023); little local support for those waiting for assessment and treatment; a lack of clarity as to who was responsible for the patient’s wellbeing during that period; little specialist knowledge of how best to support someone with gender identity disorder in local mental health services; and lack of clarity around guidance to health professionals on safe prescribing of hormones during the lengthy waiting period “There is a concern that primary and secondary/tertiary services are not working optimally, to support those during the lengthy waiting periods”.

Benjamin Hart died aged 25, in October 2022. Benjamin died by suicide.

The Senior Coroner for Central and South East Kent, Patricia Harding, recorded in the PFD that Ben:

…had a medical diagnosis of post-traumatic stress disorder, enduring personality change after a catastrophic experience, emotionally unstable personality disorder borderline type and generalised anxiety disorder. He likely had Asperger’s syndrome.

Ten months before his death, in December 2021, Ben had attempted suicide and was formally sectioned. When he was released from his section he was under the care of the Community Mental Health Team. He had been allocated a care coordinator, his care plan said they would meet with Ben weekly, but they only saw him on three occasions between May and October 2022.

Kent and Medway NHS Partnership Trust were aware that the relationship had “broken down” between Ben and his care coordinator [I’m not sure how it can be considered a relationship after only three meetings]. Despite being aware, no new care coordinator was appointed and Ben was left with no contact from the CMHT for the five weeks before his death.

He had telephoned the Crisis team three times in the two days before his death, calls which included complaints of having been abandoned by the mental health team, expressions of hopelessness about his future and indications that he felt suicidal. He was informed that the community mental health team would contact him. Although the community mental health team and the care coordinator were notified of Ben’s calls the day before his death, no one attempted contact until after this death had occurred. Kent & Medway NHS partnership Trust accepted at the inquest that the care provided to Ben fell below the standard he could have expected to receive and there were missed opportunities to treat him.

The coroner highlighted staff shortages and the impact that was having on the safe running of services:

The Trust had a shortfall of nursing staff in the Dover and Deal area at the time that Benjamin Hart was under the community mental health team such that although 16 nurses were required to run the service, the Trust only had 8 nurses employed at the time, 2 of whom were long term sick. This left a working complement of 6 nurses to cover the whole area, which required them to take on additional duties. There was no resilience within the team and therefore when the relationship between Ben and his care coordinator broke down there was no capacity within the team to allocate him another care coordinator.

Although the Trust has regrouped, reorganised and there has been some limited recruitment the shortfall endures; the evidence given at the inquest being that this is a national issue but it is particularly difficult to recruit within this area of Kent.

Benjamin Hazelden died aged 18 (?), in February 2022. The Assistant Coroner for North East Kent, Catherine Wood, concluded:

Ben died as a consequence of his own actions during an episode of disturbed dissociative behaviour whilst waiting for a specialist bed to be procured in the community as a consequence of a failure to procure and provide a suitable inpatient bed to meet his needs.

The coroner reported that Ben had a “complex history”. He was autistic and diagnosed with dyspraxia, anxiety with depression and post traumatic stress disorder (as a result of childhood abuse).

He suffered from dissociative episodes where he had at times harmed himself and others but otherwise was engaging and well-liked by those who met him. He was also in the process of seeing a neurologist given a family history of Huntingdon’s disease.

As a 17 year old Ben was admitted into hospital. His care transferred to adult services when he turned 18. He was discharged into the community in March 2021 with a 24/7 care package of support from a private care provider, where two members of staff were with Ben at all times.

He initially did well and had also been seen by a psychologist from Kent and Medway Complex Autism service and was undergoing some therapy with a view to reducing his risk and stabilisation of his presentation prior to considering any long term trauma work. He had a deterioration in his mental health in July 2021 and was admitted under the provisions of the Mental Health Act to St. Martin’s Hospital in Canterbury. He returned home in August and the dissociative incidents continued but were manageable until the end of the year when there were concerns over the increasing frequency and risks.

Ben was assessed by Liaison Psychiatry at Queen Elizabeth the Queen Mother Hospital in Margate in January 2022. They did not consider he had “an acute treatable mental health problem”. He remained in hospital whilst discussions took place about who would provide him with support.

He stayed at Queen Elizabeth the Queen Mother Hospital whilst discussions ensued between the agencies involved in his care including Kent County Council, Kent and Medway NHS and Social Care Partnership Trust, Avondale, the Integrated Care Board and East Kent Hospitals NHS Trust.

Attempts were made to obtain a specialist bed and a Mental Health Act assessment on 28th January 2022 deemed him not to be detainable under the provisions of the Mental Health Act although the possibility of an informal bed was suggested as an interim solution. Ultimately it was decided that he should be discharged home with an increased package of care and now 3 carers.

Ben returned home in early February and eight days later, on 11 February, he “assaulted two members of staff” and ran off, to his death. Not for the first time, the coroner highlighted the lack of specialist support for young autistic people.

In the course of hearing the evidence it was clear that young adults with autism who were at risk of self-harm as well as harm to others have very limited options in terms of placements where their needs can be met. A bespoke placement had been carefully created by those involved in Ben’s care but this had taken several months to arrange. This arrangement had worked well and all involved tried to make it a success and for quite some time it was. It was however recognised that there may come a time in the future when his risks to himself and others would mean an alternative placement would be needed.

When Ben’s risks to himself increased further there were no suitable beds available where he could be cared for in an environment which could meet his needs. He spent several days in an acute hospital bed despite being medically fit for discharge which although, essentially a place of safety, was totally unsuited to his needs. This stay continued whilst discussions ensued regarding where he should be placed. A bed in an acute psychiatric ward was considered but not deemed appropriate to meet his needs and as there were no specialist beds available he was discharged back to his home with increased support as the best option available. Had a bed been available in a specialist unit it is likely that he would not have died when he did.

In the evidence provided it became clear that a lot of units where a specialist bed may have been available had been closed in the past due to concerns about the level of care following a number of investigations. This has led to a system whereby locally and nationally there are limited options for those requiring care relating to both the management of autism and self-harm or harm to others, particularly when there is an urgent need for increased support. Whilst the inquest heard there were some counties who had specialist beds they were difficult to access as they were often full and places were not always available to meet urgent needs.

Blackpool and Fylde (Anon) This PFD is heavily redacted, I believe that is because it relates to a child’s death (although those are not usually anonymised). We can learn from the PFD that the boy died at their family home in September 2022.

The Senior Coroner for Blackpool and Fylde, Alan Wilson, determined that they died from misadventure. His report states that the boy’s family were preparing the evening meal when he went up to his bedroom. His parents found him unresponsive and despite his father, a neighbour and paramedics attempting CPR, he was unable to be resuscitated. The coroner found that he had not intended to end his life.

In the PFD, the coroner writes that at the time of their death, the boy was in the “early stages of an assessment process aimed at confirming if he had a diagnosis of autism. His parents had long suspected he was different from their other children”. The coroner said that his family felt if he had received an assessment and diagnosis earlier, they may have been more equipped to support him.

The court was informed that he had waited around three years for assessment. This was immensely frustrating. His Parents regularly learned that young people perceived to be more challenging were added to the waiting list at a much later stage, and allocated a place higher up that waiting list, with the inevitable consequence that X’s assessment was further delayed.

The coroner also shared some of the father’s evidence that he was a very physical, affectionate child who was interested in the outdoors, nature, wildlife, arts and crafts. He told the court that his son was making excellent academic progress, was very self-deprecating, and that he was also impulsive and a risk taker.

The concerns raised by the coroner in the PFD were as follows:

* With finite resources, it is acknowledged that it may not be possible for all young people to be assessed in as timely a manner as required, but there must surely come a point whereby, notwithstanding those finite resources, the wait for assessment is taking too long.

* The wait for assessment placed X at risk, and other children will be similarly at risk in the absence of a timely assessment.

* It is possible that had he been diagnosed earlier, and with enough time for the relevant professionals to have been able to carry out some meaningful work with him, and had his extremely supportive Parents been given more support, X’s death may have been avoided.

Haik Nikolyan died aged 21, in March 2019. The jury at his inquest concluded that Haik was a vulnerable autistic person who died by suicide “following failures by those organisations who had responsibility to protect him from harm”.

Haik had a history of mental illness, self-harm, depression, anxiety, suicidal thoughts and suicide attempts. At the time of his death Haik was being detained at a High Security Young Offenders Institution in Aylesbury.

The jury’s narrative conclusion included:

The decision to withdraw prescription medications managing his depression without a documented risk assessment or enhanced monitoring was not in his best interest and led to him experiencing psychological withdrawal symptoms, exacerbating his anxiety and depression. The insufficient security at the prison allowed illegal drugs to circulate which contributed to his bullying and exploitation and created a barrier to accessing prescription medication.

The prolific bullying, exploitation and humiliation that Haik experienced in prison contributed to his declining mental health.

Policies, procedures and interventions put in place to safeguard him were ineffective, ill-advised and at times absent. This resulted in ineffective communication, between the Prison, Health and Mental Health services which meant information was recorded but inconsistently shared and acted upon effectively. Furthermore, the absence of a process for escalating concerns put him at heightened risk.

Due consideration for the complexities that Autism Spectrum Disorder can present were not appropriately addressed. Due to a lack of adequate training and the absence of a clinical psychologist, some of his behaviours were interpreted to be dangerous rather than the presentation of Autism Spectrum Disorder. This resulted in the interventions that were in place being ineffective, and incompatible with Haik’s needs and therefore this was an unsuitable custodial environment for him.

The coroner issued the PFD to the Prisons and Probation Service, noting he had written to the Governor following an inquest three months previously, noting that the change of use of HMP Aylesbury from a Young Offenders Institution to a Category C Training Prison (a change that had occurred after Haik’s death) was not without significant challenges. He raised a concern that inadequate resourcing would impact on the longer term maintenance of newly established work on neurodiversity, and also impact on the operation of the prison more generally.

Some three months further on, my concerns are heightened to the extent that a death may result in a variety of circumstances through the continuing significant issues HMP Aylesbury is encountering in recruitment and retention of experienced prison staff, particularly Grade 3 officers.

Although initial steps are being taken towards implementation of a new neurodiversity plan, including the management of prisoners with autistic traits (pertinent to the circumstances of the death of Haik Nikolyan in 2019) and some recruitment has just taken place, without appropriate resources specifically in this area and within the broader staff cohort, there will be difficulties in maintaining this important work.

The evidence heard at this Inquest in July 2023 indicates that general staffing levels are likely to impact upon the operation of the daily regime, training and reaction to individual incidents, against a background of increasing levels of violence and access to illicit substances, resulting from the changing cohort of longer-term and older prisoners within this Category C institution.

The indication in evidence was that addressing these issues and continuing to address these issues is a matter for His Majesty’s Prisons and Probation Service, working with HMP Aylesbury.

I will return to the remaining 10 reports in due course.