5 Feb 2026 Kallum Josh REED · Prevention of Future Deaths report West London
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Concerns raised 1
Unacceptably long waits for ASD and ADHD referrals, assessments and diagnoses View source
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Linked responses
Department of Health and Social Care West London NHS Trust
Stated actions An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised. 5
West London NHS Trust
Commission additional private-provider capacity for adult autism diagnostic assessments.
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West London NHS Trust
Monitor delivery and waiting lists through robust monitoring and quality-assurance measures.
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West London NHS Trust
Streamline and improve internal adult autism assessment pathways.
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West London NHS Trust
Agree with commissioners that adult autism assessment capacity will be augmented.
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Department of Health and Social Care
Invest in training professionals in autism and ADHD diagnostic assessment.
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AI-generated summary
Kallum Josh REED · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Kallum Josh REED died after being found fully suspended during a police search following his disappearance on 11 February 2025. The report raises concerns about delays in autism spectrum disorder and ADHD referrals, assessments and diagnoses, and about crisis-care referral pathways and coordination between mental health services.
Read the report on judiciary.uk
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Unacceptably long waits for ASD and ADHD referrals, assessments and diagnoses
Wider context from the report “(1) The first concern is the "unacceptably long wait" for referrals, assessments and diagnoses of ASD and ADHD . The court was told that demand is continuing to outstrip the services ability to cope ; services are outsourced to private providers but there are still unacceptable delays . This impacts the provision of care, the provision of appropriate medication, providing the individuals with insight and understanding of their own presentations and the provision of professional support. In Kallum's case this contributed to the factors that caused his death. I am therefore raising this concern with the Minister for the DHSC and the WLNHS Trust
” Source location Kallum Josh REED · Prevention of Future Deaths report
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Commission additional private-provider capacity for adult autism diagnostic assessments.
Verbatim wording from the response “Having successfully obtained additional interim funding we have commissioned a private partner provider to provide additional autism diagnostics capacity, and we are on schedule to reduce our waiting list to under twelve months by the end of March 2026 and to reduce this further to under six months by the summer of 2026. Robust monitoring and quality assurance measures are in place to track delivery and monitor waiting lists. In tandem with this we are working on our internal pathways, to ensure that these are more streamlined and productive. Finally, whilst we have received non-recurrent resources, we” Source location 2026-0061 - Response from West London NHS Trust
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Monitor delivery and waiting lists through robust monitoring and quality-assurance measures.
Verbatim wording from the response “Having successfully obtained additional interim funding we have commissioned a private partner provider to provide additional autism diagnostics capacity, and we are on schedule to reduce our waiting list to under twelve months by the end of March 2026 and to reduce this further to under six months by the summer of 2026. Robust monitoring and quality assurance measures are in place to track delivery and monitor waiting lists. In tandem with this we are working on our internal pathways, to ensure that these are more streamlined and productive. Finally, whilst we have received non-recurrent resources, we” Source location 2026-0061 - Response from West London NHS Trust
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Streamline and improve internal adult autism assessment pathways.
Verbatim wording from the response “Having successfully obtained additional interim funding we have commissioned a private partner provider to provide additional autism diagnostics capacity, and we are on schedule to reduce our waiting list to under twelve months by the end of March 2026 and to reduce this further to under six months by the summer of 2026. Robust monitoring and quality assurance measures are in place to track delivery and monitor waiting lists. In tandem with this we are working on our internal pathways, to ensure that these are more streamlined and productive. Finally, whilst we have received non-recurrent resources, we” Source location 2026-0061 - Response from West London NHS Trust
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Agree with commissioners that adult autism assessment capacity will be augmented.
Verbatim wording from the response “have also now agreed with commissioners that the previously commissioned service was insufficient and will be augmented. The commitment of our commissioners to expand the service will be critical if we are to deliver shorter waiting times on a sustainable footing.” Source location 2026-0061 - Response from West London NHS Trust
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Invest in training professionals in autism and ADHD diagnostic assessment.
Verbatim wording from the response “While I acknowledge that there is still more to do, I can report that waiting times for assessment for potential autism in adults have fallen in the past twelve months nationally across ICB catchment areas. We believe that this progress has been aided by the ‘Right to Choose’ pathway provided by ICBs which gives patients in England the right to choose which NHS-commissioned provider they are referred to for a first outpatient appointment for ASD (and ADHD) diagnostic assessment, allowing people to access providers offering shorter waiting times. Over the last 2 years NHSE has also invested in training a range of professionals in diagnostic assessment.” Source location 2026-0061 - Response from Department of Health and Social Care
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Adult ADHD assessments are outside the Trust’s commissioned remit, so it cannot respond on this matter.
Verbatim wording from the response “The Trust is not the commissioned provider for adult ADHD assessments in any of our boroughs and therefore cannot respond on this matter. This would best be addressed to the NW London Integrated Care Board as the commissioner.” Source location 2026-0061 - Response from West London NHS Trust
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Responsibility for adult ADHD assessments rests with the North West London Integrated Care Board as commissioner.
Verbatim wording from the response “The Trust is not the commissioned provider for adult ADHD assessments in any of our boroughs and therefore cannot respond on this matter. This would best be addressed to the NW London Integrated Care Board as the commissioner.” Source location 2026-0061 - Response from West London NHS Trust
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Integrated care boards are responsible for providing appropriate local autism services in line with relevant NICE guidelines.
Verbatim wording from the response “It is the responsibility of integrated care boards (ICBs) to make available appropriate provision to meet the health and care needs of their local population, including provision of autism services, in line with relevant National Institute for Health and Care Excellence (NICE) guidelines.” Source location 2026-0061 - Response from Department of Health and Social Care
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7 Jan 2026 Joshua Lee Allcock · Prevention of Future Deaths report Black Country
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Concerns raised 1
Lack of clear national guidance on autism assessment View source
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
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AI-generated summary
Joshua Lee Allcock · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Joshua Lee Allcock, a five-year-old boy with complex medical needs and a limited diet, developed severe dehydration after entering foster care and died on 3 January 2023 despite hospital treatment. Concerns included the lack of a formal autism diagnosis and related dietary support, variation in autism assessment practice, and the potential for the capillary refill time test to provide misleading reassurance when assessing dehydration in children with similar circumstances.
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lack of clear national guidance on autism assessment
Wider context from the report “2. My concern is that Joshua was never formally diagnosed with Autism and there appears to be nationally, a variation in practice before an assessment for autism can be made . Some areas specify 3 years of age or above but there is no clear national guidance .
” Source location Joshua Lee Allcock · Prevention of Future Deaths report
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Produce national framework and operational guidance requiring access to autism assessments for people of all ages.
Verbatim wording from the response “NHS England has produced a national framework and operational guidance for autism assessments. Whilst the national framework states that “the traits that characterise autism emerge during the pre-school years, yet diagnoses given before 2 years of age are less stable than those given after this age”, the operational guidance suggests that Integrated Care Boards (ICBs) should ensure that all ages can access autism assessments: “check that people of all ages can access an autism assessment in the area”.” Source location 2026-0012 - Response from NHS England
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Maintain an established pathway for assessing children under five.
Verbatim wording from the response “Walsall Healthcare NHS Trust has in place an under 5’s pathway which has been in existence for many years. Archive records indicate that the under 5’s pathway was developed as early as 1991, this progressed to introduce a unique autism pathway from 2016. It is noted from the inquest records that your concerns are primarily with unclear national guidelines for the age at which autism can be reliably diagnosed. The pathways in use are attached for information.” Source location 2026-0012 - Response from Walsall Healthcare NHS Trust
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Provide an established autism pathway for children under five.
Verbatim wording from the response “Walsall Healthcare NHS Trust has in place an under 5’s pathway which has been in existence for many years. Archive records indicate that the under 5’s pathway was developed as early as 1991, this progressed to introduce a unique autism pathway from 2016. It is noted from the inquest records that your concerns are primarily with unclear national guidelines for the age at which autism can be reliably diagnosed. The pathways in use are attached for information.” Source location 2026-0012 - Response from Walsall Healthcare NHS Trust
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation National autism assessment guidance exists and does not impose a minimum assessment age.
Verbatim wording from the response “NHS England has produced a national framework and operational guidance for autism assessments. Whilst the national framework states that “the traits that characterise autism emerge during the pre-school years, yet diagnoses given before 2 years of age are less stable than those given after this age”, the operational guidance suggests that Integrated Care Boards (ICBs) should ensure that all ages can access autism assessments: “check that people of all ages can access an autism assessment in the area”.” Source location 2026-0012 - Response from NHS England
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Existing under-five and autism pathways are relied on alongside national guidance to address concerns about unclear autism diagnostic guidance.
Verbatim wording from the response “Walsall Healthcare NHS Trust has in place an under 5’s pathway which has been in existence for many years. Archive records indicate that the under 5’s pathway was developed as early as 1991, this progressed to introduce a unique autism pathway from 2016. It is noted from the inquest records that your concerns are primarily with unclear national guidelines for the age at which autism can be reliably diagnosed. The pathways in use are attached for information.” Source location 2026-0012 - Response from Walsall Healthcare NHS Trust
Open published response
17 Feb 2025 Joshua Jay Weavers · Prevention of Future Deaths report Hertfordshire
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Concerns raised 1
Lengthy waiting times for ASD assessments in Hertfordshire View source
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Linked responses
NHS England NHS Hertfordshire and West Essex Integrated Care Board
Stated actions An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised. 7
NHS England
Continue supporting local systems to implement national autism assessment, mental health, and suicide prevention guidance across commissioned services.
View source
NHS Hertfordshire and West Essex Integrated Care Board
Use pathways involving a wider range of clinical and non-clinical staff specialisms to support diagnosis.
View source
NHS Hertfordshire and West Essex Integrated Care Board
Implement a standardised and consistent referral and triage process.
View source
NHS Hertfordshire and West Essex Integrated Care Board
Develop a new referral front door to improve referral quality, information collation, follow-up and data collection.
View source
NHS Hertfordshire and West Essex Integrated Care Board
Establish a combined clinical triage and assessment pathway across NHS provider trusts to optimise clinical resources.
View source
NHS Hertfordshire and West Essex Integrated Care Board
Develop a care coordinator role to support families through the clinical pathway and keep them informed of progress.
View source
NHS Hertfordshire and West Essex Integrated Care Board
Provide additional funding and baseline future provider funding to support development of the neurodiversity assessment model.
View source See 4 more actions
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AI-generated summary
Joshua Jay Weavers · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Joshua Jay Weavers died on 4 March 2021 after jumping from a railway bridge and being struck by a high-speed train. The report raises concerns about lengthy waits for autism spectrum disorder assessments, delays in implementing assessment-service reforms, and bridge safety measures that did not meet current guidance.
Read the report on judiciary.uk
× Source evidence
How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lengthy waiting times for ASD assessments in Hertfordshire
Wider context from the report “2. That whilst the local mental health Trust has plans to reform the manner in which ASD assessments for patients under their care are undertaken, the implementation of those plans awaits input from the Integrated Care Board. This means that waiting times for ASD assessments in Hertfordshire remain lengthy which in turn gives rise to a risk of future deaths occurring for the reasons set out above.
” Source location Joshua Jay Weavers · Prevention of Future Deaths report
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Continue supporting local systems to implement national autism assessment, mental health, and suicide prevention guidance across commissioned services.
Verbatim wording from the response “I hope that the publication of the above guidance in 2023 and 2025 provides assurance to the Coroner and Joshua’s family that actions have been taken since Joshua’s death across the NHS to help address the concerns raised. NHS England continues to support local systems to implement the guidance across their commissioned services. Further information on the work and progress of our Learning Disability and Autism Programme can be found here: https://www.england.nhs.uk/learning-disabilities/” Source location Response from NHS England
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Use pathways involving a wider range of clinical and non-clinical staff specialisms to support diagnosis.
Verbatim wording from the response “Work has commenced in a measured and stepped way across our service providers. Key elements include:” Source location Response from Hertfordshire and West Essex ICB
Open published response
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Implement a standardised and consistent referral and triage process.
Verbatim wording from the response “Work has commenced in a measured and stepped way across our service providers. Key elements include:” Source location Response from Hertfordshire and West Essex ICB
Open published response
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Develop a new referral front door to improve referral quality, information collation, follow-up and data collection.
Verbatim wording from the response “There are different elements of an ASD assessment, and our new model establishes the resources required to operationalise this activity, specifically:” Source location Response from Hertfordshire and West Essex ICB
Open published response
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Establish a combined clinical triage and assessment pathway across NHS provider trusts to optimise clinical resources.
Verbatim wording from the response “There are different elements of an ASD assessment, and our new model establishes the resources required to operationalise this activity, specifically:” Source location Response from Hertfordshire and West Essex ICB
Open published response
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Develop a care coordinator role to support families through the clinical pathway and keep them informed of progress.
Verbatim wording from the response “There are different elements of an ASD assessment, and our new model establishes the resources required to operationalise this activity, specifically:” Source location Response from Hertfordshire and West Essex ICB
Open published response
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Provide additional funding and baseline future provider funding to support development of the neurodiversity assessment model.
Verbatim wording from the response “We are working intensively on these issues to support our providers to deliver safe and timely care, including significant investment in pathways. We have provided additional funding for the work listed above for financial years 2023/24 at circa £3 million and 2024/25 at approximately £4.1 million, further funding of £4.3 million is baselined into providers budgets for coming financial years from 2025/26 to continue to support the development of the model previously mentioned. However, it must be acknowledged that despite all the efforts detailed above it is expected that long waits for assessment will remain without wider national support, given the ongoing rises in demand that are persisting.” Source location Response from Hertfordshire and West Essex ICB
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation National guidance requires mental-health support and interventions to continue while people await autism assessment, addressing risks from diagnostic delays.
Verbatim wording from the response “In April 2023, NHS England published the National Framework and Operational Guidance for Autism Assessment Services. This framework sets out a clear expectation that autism assessment pathways must not operate in isolation from wider services. Critically the operational guidance for Integrated Care Boards states:” Source location Response from NHS England
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Hertfordshire and West Essex Integrated Care Board is responsible for delivering local autism assessment pathway improvements and providing further information on them.
Verbatim wording from the response “I note that your Report has also been addressed to Hertfordshire and West Essex Integrated Care Board (ICB). NHS England has been sighted on their response to the Coroner and notes the work being undertaken to make improvements across service providers, with key elements including:” Source location Response from NHS England
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Long ASD assessment waits are expected to remain without wider national support because demand continues to rise.
Verbatim wording from the response “We are working intensively on these issues to support our providers to deliver safe and timely care, including significant investment in pathways. We have provided additional funding for the work listed above for financial years 2023/24 at circa £3 million and 2024/25 at approximately £4.1 million, further funding of £4.3 million is baselined into providers budgets for coming financial years from 2025/26 to continue to support the development of the model previously mentioned. However, it must be acknowledged that despite all the efforts detailed above it is expected that long waits for assessment will remain without wider national support, given the ongoing rises in demand that are persisting.” Source location Response from Hertfordshire and West Essex ICB
Open published response
Concerns raised 1
Insufficient capacity for autism assessments View source
This report raised 2 other concerns. They are not shown here because they do not form part of this recurring concern.
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AI-generated summary
Brandon William Turner · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Brandon William Turner, who had diagnoses of PTSD and autism, died from suicide on 21 June 2023 at age 21; the recorded cause of death was asphyxia from fatal pressure on the neck. He had been referred to a community mental health therapy pathway, but treatment had not commenced before his death. Concerns included staffing shortages, the absence in Cornwall of a therapeutic alternative to hospital detention for people with complex PTSD/EUPD in crisis, and a lengthy autism assessment waiting list.
Read the report on judiciary.uk
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Insufficient capacity for autism assessments
Wider context from the report “(3) The inquest heard that CPFT is commissioned to assess 140 patients annually for autism. The current waiting list for assessment is in the region of two years. In other words, the demand for the service greatly exceeds the current supply.
” Source location Brandon William Turner · Prevention of Future Deaths report
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Commission autism intensive support and autism diagnostic services from Cornwall Partnership NHS Foundation Trust.
Verbatim wording from the response “The ICB has sought to mitigate this in part through the commissioning of an autism intensive support service (AIST) and autism diagnostic service from CFT. However, we accept that further mitigation is required and collectively we are working together to develop a plan to address the unmet demand locally. Whilst we develop intentions, increasing numbers of people are accessing services through the ‘Right to Choose’ initiative whereby GPs can refer people who have been waiting longer than 18 weeks to another provider that does have capacity to provide a service. Under these arrangements we are working through contractual changes to ensure consistency of provision and intend to enact these in the latter half of the year, with these providers.” Source location Response from Cornwall NHS
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Develop a plan with partners to address unmet local demand for autism assessments.
Verbatim wording from the response “The ICB has sought to mitigate this in part through the commissioning of an autism intensive support service (AIST) and autism diagnostic service from CFT. However, we accept that further mitigation is required and collectively we are working together to develop a plan to address the unmet demand locally. Whilst we develop intentions, increasing numbers of people are accessing services through the ‘Right to Choose’ initiative whereby GPs can refer people who have been waiting longer than 18 weeks to another provider that does have capacity to provide a service. Under these arrangements we are working through contractual changes to ensure consistency of provision and intend to enact these in the latter half of the year, with these providers.” Source location Response from Cornwall NHS
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Implement contractual changes with alternative autism-assessment providers to ensure consistent provision.
Verbatim wording from the response “The ICB has sought to mitigate this in part through the commissioning of an autism intensive support service (AIST) and autism diagnostic service from CFT. However, we accept that further mitigation is required and collectively we are working together to develop a plan to address the unmet demand locally. Whilst we develop intentions, increasing numbers of people are accessing services through the ‘Right to Choose’ initiative whereby GPs can refer people who have been waiting longer than 18 weeks to another provider that does have capacity to provide a service. Under these arrangements we are working through contractual changes to ensure consistency of provision and intend to enact these in the latter half of the year, with these providers.” Source location Response from Cornwall NHS
Open published response
19 Feb 2023 Molly Ann Sergeant · Prevention of Future Deaths report Essex
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Concerns raised 1
Delayed diagnosis of autism View source
This report raised 12 other concerns. They are not shown here because they do not form part of this recurring concern.
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AI-generated summary
Molly Ann Sergeant · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Molly Ann Sergeant, aged 17, was found deceased on 16 October 2020 after hanging, having left a note. The report identifies concerns about delayed autism diagnosis, insufficient assessment and discharge planning, failures in social-care assessments and coordination, and a lack of understanding of her aftercare rights and chronic suicide risk.
Read the report on judiciary.uk
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Delayed diagnosis of autism
Wider context from the report “(1) Molly had a delayed diagnosis of Autism . Molly was diagnosed during her detention at the St. Aubyn Centre when she experienced a mental health crisis and detained under the Mental Health Act.
” Source location Molly Ann Sergeant · Prevention of Future Deaths report
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The acknowledged shortcomings were not causation or contributory factors in Molly’s death.
Verbatim wording from the response “It is not our view that these shortcomings, which we have fully acknowledged and have taken significant steps to ensure do not happen again, were causation factors or contributory factors which led to Molly’s very sad death.” Source location Response from Essex County Council
Open published response
Concerns raised 1
Lack of local specialist autism assessment and adapted psychological therapy View source
This report raised 9 other concerns. They are not shown here because they do not form part of this recurring concern.
Linked responses
NHS England NHS Humber and North Yorkshire Integrated Care Board Tees, Esk and Wear Valleys NHS Foundation Trust
Stated actions An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised. 7
NHS Humber and North Yorkshire Integrated Care Board
Audit individual funding referrals to identify demand for autism-related therapy and inform service planning.
View source
NHS Humber and North Yorkshire Integrated Care Board
Hold learning events with TEWV and service users to inform autism-related therapy commissioning and delivery.
View source
NHS Humber and North Yorkshire Integrated Care Board
Consider how autism-related services should be commissioned and delivered in future.
View source
NHS Humber and North Yorkshire Integrated Care Board
Examine immediate and interim arrangements for autism-related therapy in light of the Regulation 28 notice and service-user discussions.
View source
Tees, Esk and Wear Valleys NHS Foundation Trust
Examine patients with autism and EUPD/BPD diagnoses to assess diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options.
View source
NHS England
Support projects testing improvements to autism diagnostic pathways.
View source
NHS England
Use project learning and research to inform guidance and support for improved autism diagnostic assessments.
View source See 4 more actions
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Zoe Emma ZAREMBA · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Zoe Emma ZAREMBA, who had a history of repeated self-harm and suicide attempts, ingested an unknown quantity of a substance after going missing from home and was found unresponsive on 21 June 2020; her death was established as resulting from the ingestion. The report identified concerns about clinicians’ failure to understand and adapt care to her autism, the unsubstantiated attribution of Emotionally Unstable Personality Disorder, inadequate coordinated mental health support, and the absence of effective care planning and risk assessment.
Read the report on judiciary.uk
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lack of local specialist autism assessment and adapted psychological therapy
Wider context from the report “The evidence indicated:
1 Zoe was diagnosed at age 16 years as being autistic by CAMHS with a designation of Asperger’s Syndrome. Her medical records recorded that.
2 In or about 2016 she was wrongly attributed by the Mental Health Service, TEWV, clinicians - who knew of her autism -as undergoing Emotionally Unstable Personality Disorder (“EUPD”).
3 That attribution was not formally diagnosed, and not discussed with Zoe who found out by chance when looking at her records. She continued to be regarded and treated as if she was experiencing that condition and clinicians would not adapt to her distress caused by that attribution. There was inertia and excessive delay (to May 2020) in removing reference to EUPD which had been discounted in October 2018 all of which added to her distress. These actions and inactions destroyed her relationship with community mental health clinicians and she did not trust them enough to try to restore any effective care relationship.
4 She suffered repeated trauma derived from her autistic condition revisiting the causes of her distress which she re-experienced time and again with ‘film reel’ recollection. That trauma was again not understood.
5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe.
6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:-
A no multidisciplinary clinical assessment and formulation addressed her autism;
B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all;
C no person centred (thus autism centred) holistic plan was developed to work in partnership with Zoe that took account of her autism, and her gender. As the evidence revealed one “cannot uncouple autism and other psychological/psychiatric experiences”. Instead, she withdrew from engagement with TEWV community health clinicians.
D there was no local provision within TEWV for specialist autism assessment and adapted psychological therapy . Commissioned providers of these essential cares were outwith TEWV, requiring specific Funding Request (which was granted) for a course of assessment and therapy. Those providers did not offer statutory acute mental health services support, including out of hours/crisis support. TEWV did not provide what the commissioning providers were supplying. There was a want of effective communications between these ‘teams’ not least as patient data was not accessible by one to the others electronic records (patient consent permitting) and the fact of disengagement. There was a sense of ‘silo’ working, militating against partnership working, that encouraged unfavourably the undesirable “uncoupling” of experiences;
E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts;
F there was a clinical (but not measured) experience that more patients were presenting to the statutory service with autistic conditions and, it follows, more patients would be at risk of suicide;
G from 2016 to her death, Zoe was detained under ss 2/3 MHA 1983 17 times and presented to A and E around 37 times with evident self harm and apparent attempts on her life. She repeated high risk behaviours. She had no Care Co-ordinator nor effective Care Plan (which ought to have been in place) because she had not engaged with TEWV community services;
H Zoe lurched from crisis to crisis remaining at high risk to her own safety; she died because she could no longer cope with the sense of injustice caused by others that overwhelmed her thinking. She felt she was not being listened to by community mental health services. Her therapy from outside providers - which was proving helpful to her - was disrupted by COVID-19 limitations on face to face consultations;
Both locally, including regional, but also nationally the evidence revealed a number of serious issues that require urgent and immediate action to support autistic people well, not just from a sensory and environmental basis (which TEWV have started to improve albeit from a low baseline according to the evidence received). Urgent solutions are required to prevent future deaths of autistic patients especially with mental health needs.
” Source location Zoe Emma ZAREMBA · Prevention of Future Deaths report
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Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Audit individual funding referrals to identify demand for autism-related therapy and inform service planning.
Verbatim wording from the response “The CCG/ICB has audited the referrals for individual funding which it has received within the last 24 months and there is a trend for requests for therapy for those with autism spectrum disorder which appears to highlight a need for further consideration of the commissioned service. The CCG/ICB is clear that TEWV are the commissioned mental health provider of services and as such; even where a patient” Source location Response from Humber and North Yorkshire Health Care Partnership
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Hold learning events with TEWV and service users to inform autism-related therapy commissioning and delivery.
Verbatim wording from the response “has a dual diagnosis of autism spectrum disorder and some other mental health condition; TEWV should be in a position to deliver adjusted services to support their needs. The level of requests for additional therapy for those with autism diagnosis suggests that this is not proving to be fully effective at this time. The CCG/ICB is therefore working on a series of learning events with both TEWV and service users at present whilst considering how services ought to be commissioned and delivered moving forwards, whilst also looking at more immediate and interim arrangements based on the findings in the regulation 28 notice and from direct discussions and queries with service users.” Source location Response from Humber and North Yorkshire Health Care Partnership
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Consider how autism-related services should be commissioned and delivered in future.
Verbatim wording from the response “has a dual diagnosis of autism spectrum disorder and some other mental health condition; TEWV should be in a position to deliver adjusted services to support their needs. The level of requests for additional therapy for those with autism diagnosis suggests that this is not proving to be fully effective at this time. The CCG/ICB is therefore working on a series of learning events with both TEWV and service users at present whilst considering how services ought to be commissioned and delivered moving forwards, whilst also looking at more immediate and interim arrangements based on the findings in the regulation 28 notice and from direct discussions and queries with service users.” Source location Response from Humber and North Yorkshire Health Care Partnership
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Examine immediate and interim arrangements for autism-related therapy in light of the Regulation 28 notice and service-user discussions.
Verbatim wording from the response “has a dual diagnosis of autism spectrum disorder and some other mental health condition; TEWV should be in a position to deliver adjusted services to support their needs. The level of requests for additional therapy for those with autism diagnosis suggests that this is not proving to be fully effective at this time. The CCG/ICB is therefore working on a series of learning events with both TEWV and service users at present whilst considering how services ought to be commissioned and delivered moving forwards, whilst also looking at more immediate and interim arrangements based on the findings in the regulation 28 notice and from direct discussions and queries with service users.” Source location Response from Humber and North Yorkshire Health Care Partnership
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Examine patients with autism and EUPD/BPD diagnoses to assess diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options.
Verbatim wording from the response “Within the Trust we have identified 134 patients that have both an Autism marker and a documented diagnosis of Emotionally Unstable Personality disorder (EUPD) which includes Borderline Personality Disorder (BPD).” Source location Response from TEWV
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Support projects testing improvements to autism diagnostic pathways.
Verbatim wording from the response “In the context of the NHS Long Term Plan, initiatives have been undertaken by NHS England that are of relevance to the issues raised following Zoe’s death. This includes one off funding made in 2021/2022 for future improvements, to include:” Source location Response from NHS England
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Use project learning and research to inform guidance and support for improved autism diagnostic assessments.
Verbatim wording from the response “• £7 million for local areas to test ways to improve the quality of autism diagnostic pathways. This funding supported a wide range of projects that tested new ways to support people and their families through the autism diagnostic pathway (39 projects for children and young people and 25 projects for adults: a total of 64 one-off projects). The projects are still underway, and outcomes are expected to be reported to the programme later this year and into early 2023. We will use the learning from these projects along with any available research to inform guidance/support for local systems on how to improve the quality and access to autism diagnostic assessments including pre and post diagnostic support” Source location Response from NHS England
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation TEWV is responsible for delivering core mental health care and making reasonable adjustments for patients with autism.
Verbatim wording from the response “This is therapy which is beyond that which TEWV can provide as the primary mental health provider. That does not change the expectation that TEWV be in a position to make appropriate adjustments to their mental health support for those with any neuro development diagnosis. By this we mean that we would expect TEWV to be in a position to support those with a mental health condition even where they have a diagnosis of autism spectrum disorder however it is recognised by the CCG/ICB that there may be cases where there is additional specialist input required. This is when IFR requests are made. The CCG/ICB accepts that this is becoming more frequent and the reasons for this are not clear but are sufficient for the CCG/ICB to be considering the commissioning pathway for this type of therapy.” Source location Response from Humber and North Yorkshire Health Care Partnership
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation In North Yorkshire, autism assessment and support are commissioned from services outside the Trust.
Verbatim wording from the response “• In North Yorkshire the commissioned service for assessment and support is external to the Trust and so the numbers are correspondingly less in terms of those waiting for an assessment.” Source location Response from TEWV
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Autism assessment and support in North Yorkshire are commissioned from services external to the Trust.
Verbatim wording from the response “• In North Yorkshire the commissioned service for assessment and support is external to the Trust and so the numbers are correspondingly less in terms of those waiting for an assessment.” Source location Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Specialist autism assessment and adapted psychological interventions require individual funding and are usually delivered by The Retreat.
Verbatim wording from the response “We acknowledge that commissioning arrangements which are currently led by The Clinical Commissioning Group, are complex and provided by multiple organisations. The current position is that Adult Autism diagnostic services are commissioned through The York Retreat for York and North Yorkshire and are commissioned through TEWV for Durham and Tees Valley.” Source location Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
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1 Oct 2019 Oliver Sharp · Prevention of Future Deaths report Manchester South
View report summary
Concerns raised 1
Long waiting lists for autism assessments View source
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
No linked response statements No respondent-stated action or position is linked to these concerns in the published data.
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AI-generated summary
Oliver Sharp · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Oliver Sharp died after taking a fatal dose of heroin; his death was confirmed at Wythenshawe Hospital on 18 October 2018. The inquest identified concerns about failures by mental health services to recognise and respond to his increasing level of risk during his transition from child and adolescent mental health services to reduced post-16 provision, as well as concerns about delays in autism assessment and variation in post-16 services.
Read the report on judiciary.uk
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Long waiting lists for autism assessments
Wider context from the report “The inquest was told that it is important for autism to be diagnosed as early as possible so that appropriate support can be put in place. Early diagnosis was impacted by a national picture of long waiting lists for ADOS assessments . In Stockport there was approximately a 6 month waiting list for assessment . This was against a national picture of 12-24 month waits in some areas .
” Source location Oliver Sharp · Prevention of Future Deaths report
Open source report
Actions and positions describe what organisations say in published responses. Implementation is not independently verified.