The Short Life and Lonely Death of Luke Wilden
Shortly after Luke Wilden reached his 18th birthday this very vulnerable care-leaver lost the support of the Child and Adolescent Mental Health staff, whom he knew and trusted. At the same time, he was moved out of the supported accommodation that had been his home for the last three years and into a flat in Bedford to live on his own. Just one hundred and forty-two days later, Luke was dead. The Coroner found that his death was contributed to by ‘neglect on the part of mental health services’.
When Luke was 17 months old, he was adopted by Dr Simon and Mrs Carol Wilden. His birth mother is reported to have abused alcohol during pregnancy and it was believed that this caused Luke foetal alcohol syndrome. He was later diagnosed with high-functioning autism and ADHD. Balancing this, he was a musician of rare talents. His adoptive family describe how he played eight musical instruments, for which he was mostly self-taught. He had perfect pitch and within half an hour he could play, from memory, any song he heard on the radio.
The early diagnosis of his problems, at age four, led to appropriate medication and his mother told the inquest how ‘a lightbulb came on’ and the ‘medication worked’. As he became older, however, he struggled within family life; he went into local authority care when he was 15 years old because of episodes of unmanageable behaviour and violence, although, at other times, he remained ‘a loving, creative, generous lad with a great sense of humour’. Luke moved into, what was described as, supported care with ongoing help from the CAMHS team. Giving evidence to the inquest, Professor Frank Besag, a consultant neuropsychiatrist, who had been responsible for Luke as a child, said that before his 18th birthday he was ‘doing very well’ and his decline thereafter ‘was primarily an issue of supervision and his placement’.
Social workers had struggled to find suitable accommodation for Luke once he became 18 years old. They had hoped to arrange somewhere for him to live independently but with support staff to help to care for him but he did not, apparently, meet the criteria for the available accommodation. A social worker from Central Bedfordshire Council was reported to have told the inquest that few options were available to Luke when deciding where he should live after he became 18. He moved into a one-bedroom flat in Bedford, a move described by Professor Besag as ‘highly unwise’ and added that Luke ‘did not have a good understanding of other people or how the world worked and that made him very vulnerable’. Luke’s mother agreed, telling the court that her son ‘didn’t have the life-skills to cope independently and spiralled into a period of self-destruction’.
Living alone, Luke began to spend time with homeless people and drug users. According to the police, he allowed known offenders to live there and who stole his possessions and emptied his bank account of his benefits. He began to abuse alcohol and drugs himself. It was also believed that he was subjected to ‘cuckooing’ where his flat was being taken over by drug users and Luke was being abused. Between December 2019 and May 2020, Bedford Borough Council raised 15 safeguarding alerts about Luke. In a statement following the inquest, Luke’s parents said that ‘one alert alone should do the job to ensure the safety of a vulnerable person but lines of responsibility were unclear and escalations of care did not happen in time’.
The Coroner was told that Luke was held under the Mental Health Act between February and 14 April 2020 before being discharged back to his flat. Following this and after being repeatedly found drunk or on drugs by community health workers, two community psychiatric nurses carried out a capacity assessment finding that he was unable to retain information, could not weigh up dangers or retain enough information to make decisions about the tenancy of his flat. This assessment was uploaded to the NHS shared information system on 18 May 2020.
In the early hours of 19 May, Luke was found unconscious in London’s Trafalgar Square, having taken a Spice (a synthetic cannabinoid or ‘designer’ drug) overdose. He was admitted to Luton Hospital’s psychiatric Crystal Ward and a mental health advocate emailed the ward matron about the previous day’s capacity assessment. Despite this and the fact that the ward had the authority to detain Luke until alternative living arrangements could be made, the consultant psychiatrist discharged him to his flat in the afternoon of 20 May 2020. The psychiatrist was reported to have told the inquest that he had not read the earlier assessment but would have acted in the same way even if he had seen it.
No one could contact Luke from the morning of 21 May. On the morning of 22 May 2020, Luke was found dead in his flat by his mother and a nurse. A post-mortem showed that he died from cocaine and heroin use.
In her Report to Prevent Future Deaths, Emma Whitting, the Senior Coroner for Bedfordshire and Luton, set out her findings of Luke’s death in these terms:
‘The Deceased was a vulnerable adult who had not been transitioned effectively from Child & Adolescent to Adult Mental Health services on reaching the age of 18. The consequence of this, together with the repeated systemic failure of mental health services to assess his needs, resulted in him living in unsuitable accommodation with inappropriate support from 2 January 2020 which placed him at risk of harmful activity, including drug use. Although there was no determination of civil liability, this previously identified failure as well as the failure to detain him during his final in-patient admission amounted to his death being contributed to by neglect on the part of mental health services.’
Detailing her concerns for the East London NHS Foundation Trust (‘ELFT’) the Coroner says:
‘Transition arrangements within ELFT for individuals with high functioning autism were inadequate when Luke turned 18 and, as a result, he was not transferred to the appropriate adult mental health team for continued treatment and to enable provision of an appropriate adult social care package, including suitable accommodation for him. Whilst I understand that changes have been made within ELFT in order to address this gap in services, I am concerned that these may still not be sufficient. Furthermore, I am concerned that this gap in services may also exist on a national level.’
That ‘gap in services’ identified by the Coroner is at least two different gaps into which young people, such as Luke, may easily fall. Luke’s case highlights the problem of a lack of residential facilities for those who are coping with mental health issues. We already know the difficulties experienced by young people for whom there is simply no suitable, decent, therapeutic accommodation and who are being held under deprivation of liberty orders in holiday chalets and hastily rented flats in a desperate attempt to just keep them alive.
The other gap, which the Coroner highlights, is how young people should move from CAMHS to adult services. The problem is not confined to the UK and studies have shown similar issues in North America and other European countries. The transition from adolescence to adulthood can be a turbulent time, with many simultaneous transitions to cope with. Young people interviewed by researchers have questioned the, apparently, arbitrary timing and the lack of gradual transitions rather than a sudden and inflexible move. The patients often feel that the transition is (if needed) misaligned with their own developmental needs. In Luke’s case, even if Adult Mental Health Services had taken control of his case and carried out an assessment of his needs, including accommodation, Luke would still have to cope with this at the same time as moving to new accommodation, education and the loss of clinical relationships previously trusted and valued.
Researchers have also heard about the lack of informational continuity or information sharing so that the young person may have to repeat their (often distressing) narrative with people who are strangers to them. It is not without cause that the transition from CAMHS to AMHS has been described as ‘a cliff edge’.
The tragedy for Luke and many other young people who are lost to care is that we know how a transition from CAMHS to AMHS should be carried out. There are four essential features:
- it should be planned well in advance and feature a joint meeting between both medical teams and the young person;
- there should be a period of parallel care;
- all the young person’s information should be transferred to the new service;
- there should be continuity of care after the young person has left CAMHS.
In fact, studies have shown that these rarely all occur and suggest that only between 4% and 13% of transitions comply with these requirements.
Research describes the phenomenon of those who are described as having ‘fallen through the gap’ between the two services. Some young people, despite being unwell, may find that they do not meet the higher thresholds for care from AMHS which specialises in more severe chronic mental illnesses. Alarmingly, we do not know what happens to most of the young people who have simply fallen through the gap and vanished. This is highlighted as a ‘serious cause for concern’ in a 2018 report by the NHS Healthcare Safety Investigation Branch and the 2016 NICE guidelines on those transitioning from CAMHS to AMHS.
It is imprtant that we do not simply regret the tragic outcome for one young man. Luke’s case highlights very clearly the much wider problems experienced by young people struggling with mental health issues, whether they are in local authority care or not. Mental health is still a Cinderella service; starved of resources and short of public support. Everyone wants to see a new cancer wing in their local hospital, rather fewer are campaigning to have a mental health facility in their neighbourhood.