Prevention of Future Deaths reports · 2018
Regulation 28 report to prevent future deaths, reference 2018-0316, written 24 Oct 2018. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.
| Date of report | 24 Oct 2018 |
|---|---|
| Reference | 2018-0316 |
| Deceased | Maximilien Kohler |
| Coroner | Fiona Wilcox |
| Coroner area | London Inner (West) |
| Category | Mental Health related deaths · Child Death (from 2015) |
| Organisation named | Central and North West London NHS Foundation Trust |
| Source | judiciary.uk record · original PDF |
| Responses published | 2 |
Text recovered by OCR from a scanned PDF. OCR is imperfect: check anything you rely on against the source PDF. Reproduced verbatim, including the scan's own layout.
REGULATION 28: REPORT TO PREVENT FUTURE DEATHS REGULATION 28 REPORT TO PREVENT FUTURE DEATHS THIS REPORT IS BEING SENT TO: Professor Stephen Powis, National Medical Director, NHS England, Skipton House, 80, London Road, London. SE1 6LH. Rt Hon Matt Hancock MP Secretary of State for Health Department of Health 39 Victoria Street London. SWIH 01 ext U, Paul Rees, CEO Royal College of Psychiatrists 21 Prescot Street, London. El 8BB -| CNWL CCG Chair Central & North West London NHS Foundation Trust HQ Stephenson House 75 Hampstead Road London. NWI1 2PL 1 | CORONER lam Dr Fiona J Wilcox, HM Senior Coroner, for the Coroner Area of Inner West London 2 | CORONER’S LEGAL POWERS | make this report under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009 and regulations 28 and 29 of the Coroners (investigations) Regulations 2013. 3 | INVESTIGATION and INQUEST On the 3 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 a | 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 as 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 very 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. 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 the Coroner: 1. 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. 2. 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 self -harm in particular. 3. That the NHS care commissioning structure is biased against the commissioning of services for chronic incurable conditions in general and ASD in particular. 4. That there is a lack of support and education available for parents caring for children with ASD. 5, That there is a severe shortage of inpatient psychiatric beds for children and adolescents in the NHS. 6, 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 [AND/OR your organisation] have the power to take such action. It is for each addressee to respond to matters relevant to them. YOUR RESPONSE You are under a duty to respond to this report within 56 days of the date of this report. 1, the coroner, may extend the period. Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise you must explain why no action is proposed. COPIES and PUBLICATION | have sent a copy of my report to the Chief Coroner and to the following Interested Persons : Chief Operating Officer, Central and North West London NHS Foundation Trust, Stephenson House, 75, Hampstead Road, London. NW11 2PL. | have also sent it to the following persons who may it useful or of interest: Nightingale Hospital, 11-19 Lisson Grove, London. NW1 6SH. CNWL, 7a, Woodfield Road, London. W9 2NW. Consultant Paediatrician, St Mary's Hospital, Praed Street, London. W2 iNY. | am also under a duty to send the Chief Coroner a copy of your response. The Chief Coroner may publish either or both in a complete or redacted or summary form. He may send a copy of this report to any person who he believes may find it useful or of interest. You may make representations to me, the coroner, at the time of your response, about the release or the publication of your response by the Chief Coroner. 24'" October 2018 Dr Fiona J Wilcox HM Senior Coroner Inner West London Westminster Coroner’s Court 65, Horseferry Road London SW1P 2ED
2 responses published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.
NH: c ALE Central and North West London NHS Foundation Trust Vincent Square Community Eating Disorders Service For Children and Young People 1 Nightingale Place London SW10 9NG Tel: 020 3315 3369/ Fax: 020 3315 3363 E-mail: cnw-t,CEDS-CYP@nhs.net 1st April 2019 Private & Confidential jp Dr Fiona Wilcox 4 wl pol ) ; HM Senior Coroner 10. wv | pil . a cl Inner West London tle as r ve: pI —“_ Westminster Coroner's Court 4 an yi? Vv 65 Horseferry Road Dai? ve , ( ef London SW1P 2ED } p 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, I was not aware of the report. Tam a 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, Argo House 180 Kilburn Park Road, London NW6 5FA www.cnwlnhs.uk , "3 www.cnwl.nhs.uk/feedback \f soap Uy. for life 6 PARTHERSHNE BVD VUE London | Milton Keynes | Kent | Surrey | Hampshire INHS Central and North West London NHS Foundation Trust Vincent Square Community Eating Disorders Service For Children and Young People 1 Nightingale Place London SW10 9NG Tel: 020 3315 3369 / Fax: 020 3315 3363 E-mail: cnw-tr. 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 of an 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 gain 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 of the 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 5FA www.cnwi.nhs.uk pee 48 www.cnwl.nhs.uk/feedback fV De Cy for life pANTHERSHIP london } Milton Keynes | Kent | Surrey | Hampshire Central and North West London NHS Foundation Trust Vincent Square Community Eating Disorders Service For Children and Young People 1 Nightingale Place London SW10 9NG Tel: 020 3315 3369/ Fax: 020 3315 3363 E-mail: cnw-tr.CEDS-CYP@nhs.net 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; I understand that Max was admitted to hospital for further assessment and treatment following a significant over-dose. The case was closed to our service at that point with no further contact or input. I do hope this is helpful. Please do contact me if you require further clarification or information Yours sincerely ME CEES 7 ACL EF Consultant Child & Adolescent Psychiatrist Central and North West London, NHS Foundation Trust, HEAD OFFICE, Argo House, CNWL NHS Offices, Argo House 180 Kilburn Park Road, London NW6 5FA www.cnwlnhs.uk v"s www.cnwlnhs.uk/feedback Nfeaioearfnoc for life we PARTHEASINe London | Milton Keynes | Kent | Surrey | Hampshire
ue From Caroline Dinenage MP D e re) a rtm ent Minister of State for Care of Health & 39 Victoria Street Social Care SwiHoEU 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 Door Dy liicox , 14 January 2018 Thank you for your correspondence of 24 October to Matt Hancock about the death of Maximilien Conrad Kohler. I am responding as Minister with portfolio responsibility for autism and I am grateful for the additional time in which to do so. Firstly, I would like to say how deeply saddened I was to read of the circumstances surrounding Max Kohler’s 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. I will 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 get the care and support they 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 ' https://www.legislation.gov.ulk/ukpga/2009/15/contents December 2018 that we are launching a comprehensive review of our autism strategy to ensure it retains fit for purpose’. The review is expected to report in November 2019 and will look at: e Joining up health, care and education services to address autistic children’s needs holistically; e Developing diagnostic sérvices 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 on 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 our strategy 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 well as those of professionals. We want to know what is working and where progress has been made and importantly where we need to push 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 long 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 on diagnosis nationally and are collecting data for the first time to support this, which will be published next year. 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. 7 https://www.gov.uk/government/news/, ‘govermment-review-to-improve-the-lives-of-autistic-children i : 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 7 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 lives. I 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. Con CAROLINE DINENAGE 3 https://www.longtermplan.nhs.uk/wp-content/uploads/2019/0 1/nhs-long-term-plan.pdf
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