This is the final post recapping the Prevention of Future Deaths Reports issued following the conclusion of inquests into the deaths of autistic and/or learning disabled people in 2023.

Stefan Kluibenschadl was just 15 when he died in April 2022. Assistant Coroner for North East Kent, Catherine Wood, concluded “He died as a consequence of his own actions, his intention being unknown”. Stefan was autistic and went to Laleham Gap (the same school that Sammy Alban Stanley also attended). The coroner noted Stefan had “an extremely supportive family and parents who made significant efforts to ensure that he had access to the support he needed”.

Stefan’s annual review at school found he was doing well and he started a part time job in the winter of 2020. He was thinking of a career in the army or the food industry.

Both his parents and his school noted a decline in his mental health in December 2021 and he met with the school alongside his parents and his timetable was amended and steps to obtain additional support considered. On 14th January 2022 he told a member of staff at school that he had contacted the National Suicide Prevention helpline but later appeared to deny this. He apparently did not express any intent to harm himself but did express feelings of being low.

The PFD states Stefan’s parents sought help locally, and tried to arrange private counselling for him to start after the February half term.

The service the family approached did not consider Stefan was suitable for short term counselling and advice was given to approach his General Practitioner(GP). On 15th March 2022 Stefan’s Mum spoke to his GP and asked for a letter to apply for funding from specific autism related counselling which his GP did but this was rejected and the letter received on 17th March 2022. At the consultation which occurred on the telephone between Stefan’s mother and his GP there was no mention of suicidal ideation or self-harm.

Stefan was found in his bedroom having self-harmed on 20 March and was taken to hospital. He was later transferred to Kings College Hospital where he died six days later.

In the course of hearing the evidence it was clear that local mental health services were considered to be accessible via a Single Point of Access and that anyone could refer in this way and the healthcare provider would then screen any referral which was made and possibly provide treatment. However such a referral was not made for Stefan because it was not clear that this was available to Stefan’s family who would have taken whatever steps they could have done to ensure appropriate support. His General Practitioner was aware of the Single Point of Access and that there were groups available but waits for specific services for those with autism in her experience were at least 3 months and instead she referred him to a different service at South London and the Maudsley which she considered may better suit his needs. The referral was rejected but the correspondence on this only came to light after Stefan’s sad death.

In her PFD the coroner discusses NICE Guidance referred to in the court, for autistic young people under the age of 19, that recommended they should have a key worker. She notes that Stefan did not have a key worker.

I asked for further evidence on the provision of case managers/key workers in accordance with the NICE guidance after the inquest from North East London Foundation Trust and from Kent and Medway Integrated Care Board. It is clear from the evidence provided that such a service is only provided to those under 19 year olds who have both a learning disability and/or a diagnosis of autism and are at risk of admission to a mental health hospital or where there is a significant sudden deterioration in the community and the multi disciplinary team has not been responsive. The lowest level of service outlined in reply to the court indicated that referrals could be made to a key worker to sign post families not that they would have a key worker allocated to them. This sets the bar at a level which means a large number of young people with a learning disability and/or autism would not have a key worker nor would they be expected to have one.

In the evidence provided it was outlined that “Keyworkers will make sure that these children, young people and families get the right support at the right time. They will make sure that local systems are responsive to fully meeting the young people’s needs in a joined-up way and that whenever it is possible to provide care and treatment in the community with the right support this becomes the norm.” 

If every autistic child or young person had a key worker this would enable them or their family the opportunity to liaise with their key worker rather than having to try to navigate services themselves. This, in turn, may prevent others from encountering the issues faced by Stefan’s family and ultimately prevent future deaths.

Thomas Jayamaha was 23 when he died in February 2022. Assistant Coroner for Nottinghamshire, Dr Elizabeth Didcock concluded that Tom died by suicide. Tom was autistic and had “a long history of suicidal ideation, with previous self harm/suicide attempts”.

The coroner writes in Tom’s PFD that he had long term mental health difficulties.

He had a number of factors in his life that made him vulnerable to low mood and suicidal ideation, including his ASD diagnosis, a history of sexual abuse, difficulties in his family relationships, and that he was in a long term coercive and controlling relationship, that was not understood by Trust staff. 

Tom had been repeatedly referred to Nottinghamshire Healthcare NHS Foundation Trust by his GP. His GP was repeatedly asking for psychological support for Tom, who was “considered too great a risk for him to be seen by Primary Mental Health services”. 

Despite these requests, Tom was unaware of a treatment plan for him by the local mental health team when he died, and he believed the Trust were unable to help him given the repeated rejection of the referrals made on his behalf.

Tom was also unaware of the local mental health team treatment plan for him when he died, and reportedly felt that the Trust could not help him as referrals were repeatedly rejected by teams across the Trust.

The coroner identified three matters of concern, the Serious Incident Investigation process, insufficient progress with complex case management and delayed progress on Autism Strategy work across the Trust.

I ask that the Nottingham and Nottinghamshire Integrated Care Board provide a joint response with the Trust to address this concern, as I accept progress with the Autism work will depend upon resources and the agreed Commissioning of specific services.

The final autistic person whose PFD I’ll cover is Zachary Klement. I don’t know exactly how old Zachary was when he died, in March 2021, but I think in his early 20s.

Anna Luxton, the Assistant Coroner for Surrey concluded that Zachary had died by suicide “during a crisis of deteriorating mental health and increasing suicidal ideation”. In her narrative conclusion she refers to Zachary having a long history of mental ill-health since childhood. He was autistic and had also been been diagnosed with EUPD (Emotionally Unstable Personality Disorder), general anxiety disorder and Bipolar Affective Disorder.

Zachary lived in the community in supported living accommodation. His mental health deteriorated in early 2021 and he was admitted to Farnham Road Hospital in Guildford as an informal patient on 26 January. Less than a week later he was discharged back to his home, and was under the care of the Home Treatment Team initially, before then transferring to the Community Mental Health Recovery Service.

He continued to have fluctuating mood and episodes of self-harm, and he sought help from Safe Haven and the Psychiatric Liaison Service at St Peter’s Hospital on 4th, 22nd, 24th and 28th February.

On the last occasion, 28th February 2021, he expressed concern he could not keep himself safe. He requested inpatient admittance and then agreed to Home Treatment Team care before changing his mind.

On this occasion his immediate risk was assessed as low and he was discharged back to the Community Mental Health Team. This was a missed opportunity to contain and manage his risk whilst exploring his needs.

The lack of availability of psychological therapies and resources tailored to the needs of patients with Autistic Spectrum Disorder which could be offered to Zachary by Surrey & Borders Partnership NHS Foundation Trust also represented a missed opportunity to provide therapeutic care.

Two days after telling staff he could not keep himself safe, Zachary sent a text message to his care coordinator. It stated he wished to discharge himself from mental health services as he felt they were not helping him.

He died by suicide later that same day on March 2nd.

The coroner identified a number of matters of concern. She highlighted that Zachary required care “tailored to his neurodiverse needs”. Two psychiatrists who had treated Zachary, and the court expert, all expressed concern “regarding the lack of consideration for those with neurodiverse conditions in the care options available, and the lack of availability of appropriate therapies”.

The coroner flagged the inherent risks of inpatient mental health units for those who are neurodiverse and identified a number of risks with the current approach.

There are no inpatient options tailored to patients with neurodiverse conditions presenting in acute crisis. Home Treatment Teams do not offer continuity of staff or set appointment times, as they are a crisis team allocated according to demand. This stability is required by those suffering from ASD.

There is a lack of availability of psychological interventions, being the main treatment for neurodiverse conditions, including art therapy, Dialectical Behaviour Therapy (DBT) and Systems Training for Emotional Predictability and Problem Solving (STEPPS) (Zachary was placed on a waiting list).

Consideration should be given to whether any steps can be taken to address the above concerns.

All of the 16 Prevention of Future Deaths Reports issued in 2023, following the deaths of autistic people, related to episodes of deteriorating mental health (whether they were concluded to be suicides, misadventure or intention unknown) where there was a lack of suitable support or therapy, in the community or in inpatient settings.

People are told to ask for help, many of these people did. Some asked, and were rejected by services so often, they felt hopeless and that no-one was willing or able to help them. How many more times does the Secretary of State for Health and Social Care, NHS England, local trusts and services need to be told that lives are at risk?

I’ll end with the conclusion of the Parliamentary Health and Social Care Committee report that the coroner quoted at the conclusion of Jessie Eastland-Seares inquest. It states:

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 …

We also recommend that the Department then needs to redesign the financial incentives in the healthcare system so that local authorities do not seek to ‘offload’ autistic people and people with learning disabilities onto the NHS or place these individuals in inpatient facilities. The Department must instead offer a credible alternative and provide additional support so that autistic people and people with learning disabilities can live independent and fulfilled lives in the community.

When will autistic and learning disabled people have their Human Rights upheld? Where are those independent, free, fulfilled lives that have been long promised, yet not delivered?