Maximilien Kohler

PFD Report Partially Responded Ref: 2018-0316
Date of Report 24 October 2018
Coroner Fiona Wilcox
Response Deadline est. 20 April 2019
Coroner's Concerns (AI summary)
Misdiagnosis of ASD was linked to over-reliance on questionnaires and less experienced clinicians, compounded by a lack of services for chronic, complex conditions.
Responses
Central and North West London NHS Foundation Trust NHS / Health Body
1 Apr 2019
Noted
The Trust provides an account of their involvement with the patient's case, including the referral and assessment process for a possible co-morbid eating disorder, and explains why a full ASD assessment was not carried out by their service. (AI summary)
View full response
Dear Dr Fiona Wilcox, Re: Regulation 28 report - Maximilien Kohler Thank you for your report and recommendations following this tragic event I sincerely apologise for my delayed response to your regulation 28 report: Understandably, since it had been some time since my involvement with the case, was not aware of the report: Iam Child and Adolescent Psychiatrist in the CNWL Community Eating Disorders team, one of the two consultants who assessed this young person prior to his in patient admission. I would like to provide an account of my involvement and formulation of the case 16/05/2017 referral made by the community CAMHS team to Community Eating Disorders Service for Children and Young People (CEDS-CYP), for further assessment of a possible co-morbid eating disorder: Central and North West London, NHS Foundation Trust, HEAD OFFICE, Argo House, CNWL NHS Offices, House 180 Kilburn Park Road, London NW6 SFA WWW. cnwlnhs uk WWW cnwLnhs uk/feedback VVellbeing for life PanTTaSIIF London Milton Kcyncs Kcnt Surrcy Hampshirc Eating Kohle} 8 "ry '4 #/xo 446 6 ~leceze V Y _le 4 Argo

[HS Central and North West London NHS Foundation Trust Vincent Square Community Disorders Service For Children and Young People Nightingale Place London SW1O 9NG Tel: 020 3315 3369_ Fax: 020 3315 3363 E-mail: cnW-b CEDS-CYP@nhs net 06/06/2017 Max and his parents were seen for an initial assessment with the CEDS- CYP. The assessment was conducted by me,a senior systemic psychotherapist and assistant psychologist The assessment followed our standard protocol, lasting, at least two hours. The first 45 minutes consisted ofan interview with Max, his parents and three clinicians: I then interviewed Max alone, to conduct a mental state examination and brief physical examination; whilst our systemic psychotherapist interviewed the parents alone. Following a multi-disciplinary discussion, we provided feedback to Max and his family, explaining that we agreed with the diagnosis of Moderate Depressive Episode, made by the community CAMHS team. We also explained that his symptoms of recurrent episodes of binging and recurrent use of purging as an inappropriate compensatory behaviour to prevent weight were in keeping with the diagnostic criteria for Bulimia nervosa. In line with the current evidence base for treatment of children and young people with bulimia nervosa, we offered a family based intervention. We also explained to the family that we would discuss the details of joint care and further recommendations, with the community CAMHS. Following the assessment I documented in our electronic notes that the depression could be underpinned by neurodevelopmental factors. On 08/06/2017 during a telephone discussion with the community CAMHS team, [ explained my formulation regarding the possibility of underlying neurodevelopmental factors, namely high functioning Autism Spectrum disorder (ASD), for community CAMHS to consider for further assessment Full assessment of high functioning ASD is nuanced, requiring both a structured developmental assessment and semi-structured observational assessment ofthe young person. As such, these assessments are not carried out within CEDS-CYP, but are referred to the community CAMHS for assessment: Central and North West London, NHS Foundation Trust; HEAD OFFICE, Argo House, CNWL NHS Offices, Argo House 180 Kilburn Park Road, London NW6 SFA WWW ~cnwLnhs uk WWW_cnwLnhs uk/feedback VVellbeing for life 14` ` PAMTMEIAITP L,ondon Milton Keyncs Kcnt Suirrcy Hampshirc Eating gain

NHSi Central and North West London NHS Foundation Trusi Vincent Square Community Disorders Service For Children and Young People 1 Nightingale Place London SW1O 9NG Tel: 020 3315 3369 / Fax: 020 3315 3363 E-mail: cnw-tCEDS-CYP@nhsnet Underlying ASD traits are recognized increasingly as a contributing risk factor for a number of psychiatric disorders and as such,assessment services are in high demand. Shortly before our service was due to commence family based treatment; [ understand that Max was admitted to hospital for further assessment and treatment following - significant over-dose: The case was closed to our service at that point with no further contact or input Ido hope this is helpful. Please do contact me ifyou require further clarification or information
Department of Health Social Care Central Government
Action Planned
The Department of Health and Social Care acknowledges concerns about outcomes for young people on the autistic spectrum and is launching a comprehensive review of the autism strategy, expected to report in November 2019, which will include a national call for evidence. (AI summary)
View full response
From Caroline Dinenage Minister of State for Care Department of Health & 39 Victoria Street London Social Care SWIH OEU 020 7210 4850 Our Ref: PFD-1154169 Dr Fiona Wilcox HM Senior Coroner; Inner West London Westminster Coroner's Court 65 Horseferry Road London SWIP 2ED 14 January 2018 Acac Atcox _ Thank you for your correspondence of 24 October to Matt Hancock about the death of Maximilien Conrad Kohler: Iam responding as Minister with portfolio responsibility for autism and I am grateful for the additional time in which to do s0 Firstly, I would like to say how deeply saddened I was to read of the circumstances surrounding Max Kohler' $ death: If you have the opportunity to do SO, please pass on my condolences to his family. I can appreciate this must be a very difficult time for them. You issued your Report to NHS England and the Royal College of Psychiatrists and my officials have liaised with those bodies to understand their response to the concerns you have raised: Iwill not repeat the detail of those responses However; I would like to add that we acknowledge that outcomes for young people on the autistic spectrum are simply not good enough: We want to ensure that all autistic children and young people _ the care and support need. November 2019 will mark ten years since the Autism Act' was passed. To continue to improve outcomes for autistic people, their families and carers, we announced on 5 httpsIlwww legislation Luklukpga/2009LL S/contents MP L they - get LQV:

December 2018 that we are launching comprehensive review of our autism strategy to ensure it remains fit for purpose?,. The review is expected to report in November 2019 and will look at: Joining up health, care and education services to address autistic children'$ needs holistically; Developing diagnostic services to diagnose autism earlier; in line with clinical guidance; Improving the transition between children and adult services so that no young people miss out, and ending inappropriate reliance 0n inpatient hospital care; and Improving understanding of autism and all its profiles, including recently identified forms such as pathological demand avoidance (PDA) We want an autism strategy that works for all autistic people, and that is why, working closely with the Department for Education, we will be extending ouI to include children We want to ensure that children with autism are identified early and receive integrated, person-centred care at the right time and in the right setting to meet their range of needs. Early in the new year; to inform our review, we will be launching a national call for evidence to hear the views of autistic people, their families and carers as as those of professionals: We want to know what is working and where progress has been made and importantly where we need to harder to transform the lives of autistic people, their families and carers_ Your Report and the matters of concern raised within is helpful information to feed into this work Adults and children should not have to face waits for an autism diagnosis. NICE recommends the length between referral and the initial assessment should be no more than three months We are determined to drive up performance 0n diagnosis nationally and are collecting data for the first time to support this, which will be published next We will use this data and other evidence collected as part of the review process to determine how we can ensure the best outcomes for children: In addition, in Spring this year; we will make available new and improved guidance for health and care commissioners and a best practice toolkit to improve diagnosis and post-diagnosis services for all people with autism https Ilwww govuklgovernment-news/goverument-revicw-to-improve-the-lives-of-autistic-children strategy- well push long year:

Finally, I am pleased to say that learning disability and autism has been included as one of the four clinical priorities in the NHS Long Term Plan' published on January. The NHS is committed to do more to ensure that all people with a learning disability, autism, or both can live happier; healthier, longer 1 hope this response is helpful and provides assurance that we are determined to improve the care and support available for autistic people, their families and carers_ Q_ CAROLINE DINENAGE https:Ilwwwlongtermplan nhsuklwp-contenthuploads/2019/0Lnhs-long-tern-planpdf lives_
Sent To
  • CNWL NHS Trust
  • Department of Health and Social Care
  • NHS England
  • Royal College of Psychiatrist
Response Status
Linked responses 2 of 4
56-Day Deadline 20 Apr 2019
About PFD responses

Organisations named in PFD reports must respond within 56 days explaining what actions they are taking.

Source: Courts and Tribunals Judiciary

Report Sections
Investigation and Inquest
On the 3rd October 2018, evidence was heard touching the death of Maximilien Conrad Kohler: Max had been found deceased hanging by a belt around his neck from a pull-up bar positioned across his bedroom door at his home address_ He was 15 years old at the time of his death: The findings of the court were as follows: Medical Cause of Death 1 (a) Fatal pressure to the neck

How; when and where the deceased came by his death: Max suffered with Autistic Spectrum Disorder and Attention Deficit Syndrome At times symptoms of ASD would overwhelm him and he would attempt to take his own life or self-harm On 5/5/2018 he was found hanging by his father at his home address. Despite resuscitation his life could not be saved and he was recognised as life extinct at 07.23_ He had left 2 messages expressing intent and demonstrating capacity. Conclusion of the Coroner a8 to the death: He took his own life whilst suffering from Autistic Spectrum Disorder Circumstances of the Death_ Evidence taken at the inquest confirmed that Max had not been diagnosed with ASD until he saw a third and experienced Child and Adult Psychiatrist; at least in part because Max was clever and able to cross compensate for the issues that the ASD caused him and instead had been incorrectly diagnosed with depression and bulimia nervosa, of which there was no evidence when he was assessed at length in an inpatient setting: These diagnoses had at least in part been arrived at by the use of questionnaires. Expert evidence was taken and accepted by the court that the earlier misdiagnosis may have been contributed to by the latest fashion in mental health to over rely on questionnaires and perhaps less upon clinical evaluation of the whole picture presented by the patient: It is possible that such over-reliance can contribute to misdiagnoses and underestimate risk: The over reliance on the use of questionnaires to assess the risk of self-harm compared to full psychiatric history taking and evaluation of the patient in the round by a clinician with experience has been a repeated theme in inquests. It was also discussed and accepted by the court that the current training regime for the training of specialist doctors is shorter that it was in the past so that doctors now become consultants with far less experience at senior registrar level, and consequently less exposure to and skill with diagnostics across the range of psychiatric conditions_ Further it was discussed and accepted by the court that there is a relative paucity of services for conditions which are chronic and difficult to treat and cure compared to illnesses which respond to short term therapies_ and so show easily auditable improvements in health with the application of evidence based guidance. This was considered by the expert and accepted by the court to reflect the style of commissioning of care by CCGs who wish to support and prioritise the services to relatively easily treatable conditions_ ASD was accepted to be a lifelong incurable condition which responds only to long term supportive care _ and so to have expensive and resource rich treatment requirements. As such ASD would come towards the bottom of the pile for CCG commissioned treatment and care. The expert stated that care provision is even worse for adults with ASD and other similar conditions than for children. Max's parents gave extensive evidence in relation to the support and information that they have received since his suicide compared to the time when they were trying to care for him whilst he was alive. They described a lacuna in support and educational provision for parents attempting to assist a child with ASD_ When Max needed urgent in patient admission there was no bed available in London in Child and Adolescent psychiatric services, and if his parents had not been able to access private health care he would have needed to have been hospitalised in Sheffield. very

A report from CNWL; accepted by the court, stated that a new facility is currently being built to provide psychiatric beds for children and adolescents in West London, but this cannot alone address the scarcity of provision across the rest of London and England. Concerns of Coroner: That delays in diagnosis and misdiagnosis in medicine due to reduced time in training for doctors in general and psychiatry in particular; may imperil the lives of vulnerable patients_ That over reliance in the current fashion on questionnaires used in diagnostics and management may impede rather than assist doctors and other clinicians, firstly to arrive at the correct diagnosis in the first place, and secondly to cause or contribute to underestimation or proper evaluation of the risk of ~harm in particular That the NHS care commissioning structure is biased against the commissioning of services for chronic incurable conditions in general and ASD in particular; That there is a lack of support and education available for parents caring for children with ASD That there is a severe shortage of inpatient psychiatric beds for children and adolescents in the NHS_ That services for adults with ASD are even less well provided for by the NHS than those for children.
Action Should Be Taken
In my opinion action should be taken to prevent future deaths and believe you [ANDIOR your organisation] have the power to take such action. It is for each addressee to respond to matters relevant to them;
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Data sourced from Courts and Tribunals Judiciary under the Open Government Licence.