Recurring concern

Failure to provide accessible care for people with complex neurodevelopmental needs

First to latest report 12 Mar 2022 — 15 Jan 2025

Reports that mention this concern
4
Times this concern has been raised
5
Stated actions linked to this concern
6

What this concern includes

Includes failures in healthcare or care-service arrangements that prevent people with complex neurodevelopmental needs, including autism or related developmental conditions, from accessing appropriate assessment, treatment, support or care; include exclusion from required services and persistent cultural, structural or systemic access barriers.

What is not included
  • Excludes the existing concern specifically about the reliability of Care, Education and Treatment Reviews unless the assertion also identifies a broader failure to provide or access required care.
  • Excludes generic mental-health, physical-health or social-care access problems where complex neurodevelopmental needs are not a material qualifier.
  • Excludes isolated failures to provide a particular reasonable adjustment after access to appropriate care has otherwise been secured, unless the adjustment failure is itself the reason required care was inaccessible.
  • Excludes staffing, training, expertise or care-coordination deficiencies that do not directly leave people with complex neurodevelopmental needs without access to required care or treatment.

Reports and published responses 4 reports

See individual reports that have raised this concern, and the actions taken in response

  1. Manchester South

    AI-generated summary

    Robert John McGowan · 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

    Robert John McGowan died at Stepping Hill Hospital, Stockport, on 13 August 2024 from complications arising from partially treated spontaneous bacterial endocarditis, against a background of autism and complex mental health needs. The concern was that cultural, structural and systemic barriers to accessing physical healthcare contributed to the bacterial endocarditis being only partially treated, despite advocacy, individual adjustments and a Health Passport.

    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

    Failure to overcome cultural, structural and systemic barriers to physical healthcare for people with autism and complex mental health needs

    Wider context from the report

    “I am concerned that, as a consequence of living with Autism and complex mental health needs, Mr McGowan encountered cultural, structural and systemic barriers to receiving treatment for his physical health needs, the result of which was that the bacterial endocarditis which led to his death had only been partially treated. The court heard evidence that these barriers continued to exist notwithstanding advocacy provided by a charity which supported Mr McGowan, a range of individual adjustments healthcare professionals sought to make to facilitate his access to care and treatment, and the fact he had a Health Passport. ”

    Source location

    Robert John McGowan · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    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

    Roll out Oliver McGowan Mandatory Training on Learning Disability and Autism for healthcare staff.

    Verbatim wording from the response

    “We are taking action to increase awareness and understanding of autism amongst healthcare professionals, to help ensure that staff have the right knowledge and skills to provide safe and informed care. Under the Health and Care Act 2022, service providers registered with the Care Quality Commission (CQC) are required to ensure their staff receive learning disability and autism training appropriate to their role. This training will also help to improve the culture within health and social care services, including shifting attitudes and approach to ensure people with a learning disability and autistic people are treated safely, respectfully and confidently.”

    Source location

    Response from Department of Health and Social Care
    Page 2 · response
    Published 16 January 2025

    Open published response

  2. Essex

    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

    Source evidence

    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
    Page 2 · concerns

    Open source report

    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

    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
    Page 2 · response
    Published 10 March 2023

    Open published response

  3. North Yorkshire and York

    AI-generated summary

    Antony Christopher MCLELLAN · 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

    Antony Christopher McLellan was found unresponsive, hanging by a ligature in the garage at his home on 9 July 2021; his death was recognised that afternoon and the inquest concluded that he died by suicide. Concerns included that assessment and formulation of risks and safety did not fully explore the impact of his autism, including how he might communicate distress and risk, and that autism-informed support and services required significant improvement and expansion.

    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

    Failure to provide autism treatment in North Yorkshire

    Wider context from the report

    “1 Mr McLellan was diagnosed over 2016/16 as being autistic with a designation of Asperger’s Syndrome. He was also diagnosed as experiencing Bipolar Disorder, an attribution he did not accept which he repeatedly asserted to both previous Mental Health care providers and the subsequent Trust clinicians tasked with supporting him at the time of his death, Tees Esk and Wear Valleys NHS Foundation Trust (“TEWV”) 2 He insisted his difficulties were linked to his autism and not mental disorder. It was accepted that he experienced autism and that was part of his individuality and that in addition he may have had a mental health disorder. It was accepted that his care and treatment cannot unbundle the two but he should be treated holistically. 3 Assessment and formulation of risks and safety summary did not fully explore the impact of his autism. There was little to suggest that TEWV staff) considered the higher prevalence of suicide for individuals with a diagnosis of autism and that Mr McLellan may have communicated his distress and risks information differently to an individual without a diagnosis of autism during his periods of crisis or increased risk and c) made sufficient reasonable adjustments in relation to the impact of his autism. 4 At the time of his death, TEWV had progressed from a low baseline in the Trust’s work in North Yorkshire to address perceived underdevelopment in their services for the autistic patient when presenting with a mental health disorder. It had expanded the use of a specialist team (Autism Project Team- “APT”) to extend its work into North Yorkshire caseload. The steps taken were incremental and not all staff understood that Team and access to that important resource. It is recognised that improvements would take time and be resource dependent as well however. 5 APT has three specialist and autism dedicated practitioners working exclusively with autism across the whole Trust in both its regions of commissioned care although there are also non-dedicated clinicians with some expertise of autism within TEWV. TEWV does not treat autism in North Yorkshire. 6 TEWV in its recent audit indicates about 17% of the individuals open to TEWV (over 10,000 in number) have an autism marker or have an ICD-10 diagnosis of autism or experience suspected/confirmed autism or have a referral including being suspected as autistic. 7 There was no direct causation to the suicide found that directly attributed the acts he took to his autism from the evidence. However Mr McLellan’s distress and stressors before his death included his feelings that he was not getting what he saw to be the right help and that he would not lose his feelings of helplessness such that he took his own life. The concern is that the very significant number of those open to TEWV with an autism marker has increased and will continue to do so and that the higher prevalence of suicide within that expanding group will lead to higher risk of, and numbers of, autistic individuals dying because of suicide both within TEWV locally but also nationally. Urgent solutions are required to prevent further deaths of autistic individuals especially those with mental health disorder by rapidly improving and expanding provisions for assessment and management of risk of harm to themselves for individuals within the autism spectrum while presenting with a mental health disorder. ”

    Source location

    Antony Christopher MCLELLAN · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    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

    Invest in expanding and transforming integrated community mental health services, including intensive and community support for autistic people and people with learning disabilities.

    Verbatim wording from the response

    “The NHS Long Term Plan, which is a plan for the future of the NHS, also includes ambitious investment to expand and transform community mental health services for adults and older adults with severe mental illness. From April 2021, all areas are receiving significant additional, ring-fenced funding on a fair-share basis to develop fully integrated primary and community mental health services, that enable people with severe mental illness to have greater choice and control over their care and support them to live well in their communities. By 2023/24, this investment will amount to almost £1billion extra per year for adults and older adults with severe mental illness.”

    Source location

    Response from NHS England
    Page 2 · response
    Published 27 September 2022

    Open published response

    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

    The Integrated Care Board is responsible for commissioning North Yorkshire mental health services, rather than this respondent.

    Verbatim wording from the response

    “The Humber and North Yorkshire Integrated Care Board (ICB) is the Commissioner that has adopted the contracts which were held by NHS North Yorkshire Clinical Commissioning Group (CCG) and have shared their response with me.”

    Source location

    Response from NHS England
    Page 3 · response
    Published 27 September 2022

    Open published response

    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

    TEWV is responsible for delivering mental health services and making autism-related reasonable adjustments under its contract.

    Verbatim wording from the response

    “The CCG (and now ICB) commission Tees, Esk, Wear Valley NHS Trust (TEWV) to provide the Mental Health provision to the residents of North Yorkshire. This would be the case whatever the Mental Health condition is and whether that is suspected, being assessed or diagnosed. The contract requires this provision of service. In addition to this where an individual with mental health conditions also has a diagnosis of autism, the contractual expectation would be that TEWV would make reasonable adjustments to their service to ensure that it is delivered to meet the needs of those individuals with autism and a mental health condition.”

    Source location

    Response from NHS England
    Page 3 · response
    Published 27 September 2022

    Open published response

  4. North East Kent

    AI-generated summary

    Samuel Alban Stanley · 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

    Samuel Alban Stanley died in hospital on 26 April 2020 from injuries sustained during an episode of high-risk behaviour related to his Prader-Willi syndrome. The report raised concerns about inadequate support for him and his family, limited access to appropriate services, and poor communication between agencies.

    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

    Exclusion of children with complex neurodevelopmental needs from required care and treatment

    Wider context from the report

    “(5) It was clear at the hearing that locally Kent County Council had taken steps to change the way their services were delivered following Sammy’s death but it is predictable that a similar incident may arise in other areas if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe. ”

    Source location

    Samuel Alban Stanley · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    Source evidence

    How this individual concern was interpreted

    PFD Monitor created a concise, searchable interpretation from the report wording shown below.

    PFD Monitor interpretation

    Diagnostic-only commissioning for children with autism and learning disabilities without an overt mental health diagnosis

    Wider context from the report

    “(3) There was evidence given that the mental health team at North East London Foundation Trust were also aware of Sammy’s high-risk behaviours. Support had been provided by a psychology student in the past and he had reportedly responded well to mindfulness therapy and the de-escalation techniques employed by his family. Psychosocial interventions were not offered by the Mental Health Trust and a Care Education and Treatment Review was suggested but not implemented before Sammy’s death. The court heard that such interventions may not have been successful but, in any event, North East London Foundation Trust had not been commissioned to provide anything other than a diagnostic service to children presenting with autism and learning disabilities rather than an overt mental health diagnosis. ”

    Source location

    Samuel Alban Stanley · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    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 and maintain a Dynamic Support Database for children and young people with complex learning disability and autism needs.

    Verbatim wording from the response

    “The CCG has also established a ‘Dynamic Support Database’, which has been developed to enable all statutory partners to better understand the needs of children and young people with Learning Disability and Autism. Consent to details being added to the database is given and the CCG holds this list to ensure it can support patients who may need additional services or help in future. It is a way of helping managing system risk for patients with complex needs and helps facilitate system ownership of all these cases, to ensure provision of the right help and support at the right time, in collaboration with the patient and their family.”

    Source location

    Response from Kent and Medway Clinical Commissioning Group
    Page 3 · response
    Published 17 March 2022

    Open published response

    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

    Invest £2.1 million in local neurodevelopmental services to improve provision for children and young people.

    Verbatim wording from the response

    “In terms of the commissioning of services, the CCG actively works with partners across the health system to ensure gaps do not exist and that pathways are in place to cater for the presentations and needs of the local communities it serves. NELFT are commissioned to provide more than just diagnostic services including psychological and psychosocial interventions, but the CCG acknowledge that mental health services are under extreme pressure, with increasing referrals that have significantly peaked during and post pandemic. Therefore, the CCG is actively working with NELFT to ensure that services are developed to meet the needs of all children and young people and to identify areas where the service offer can be strengthened and have increased significant levels of investment to help address this.”

    Source location

    Response from Kent and Medway Clinical Commissioning Group
    Page 3 · response
    Published 17 March 2022

    Open published response

    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

    Work with NELFT to develop children’s mental health services and strengthen the service offer for children and young people.

    Verbatim wording from the response

    “In terms of the commissioning of services, the CCG actively works with partners across the health system to ensure gaps do not exist and that pathways are in place to cater for the presentations and needs of the local communities it serves. NELFT are commissioned to provide more than just diagnostic services including psychological and psychosocial interventions, but the CCG acknowledge that mental health services are under extreme pressure, with increasing referrals that have significantly peaked during and post pandemic. Therefore, the CCG is actively working with NELFT to ensure that services are developed to meet the needs of all children and young people and to identify areas where the service offer can be strengthened and have increased significant levels of investment to help address this.”

    Source location

    Response from Kent and Medway Clinical Commissioning Group
    Page 3 · response
    Published 17 March 2022

    Open published response

    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

    Create joint posts across local authority and primary care to identify children with additional needs early and coordinate care rapidly.

    Verbatim wording from the response

    “Since Sammy’s death, KMCCG has made investments in posts and mechanisms to improve the offer for children and young people with neurodevelopmental presentation. A number of joint posts have been created across the Local Authority and Primary Care so that children and young people with additional needs are identified early and care is coordinated rapidly around the child and family.”

    Source location

    Response from Kent and Medway Clinical Commissioning Group
    Page 5 · response
    Published 17 March 2022

    Open published response

    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

    Kent local authority is responsible for undertaking assessments and providing services for children in need, including disabled children.

    Verbatim wording from the response

    “I am sorry to hear that Samuel was not offered the care and treatment that he needed to keep him safe, and for the poor communication between the agencies that were supposed to provide this care. Local authorities have a duty under s17 of the Children Act 1989 to carry out an assessment of children in need and to provide services to them for the purpose of safeguarding and promoting their welfare. Working together to safeguard children (2018), sets out that safeguarding partners should agree with their relevant agencies the levels for the different types of assessment and services to be delivered, including services for disabled children. Safeguarding partners should then publish a threshold document setting out local criteria for action, including procedures and processes for cases relating to disabled children. It would therefore be for Kent local authority to undertake this.”

    Source location

    Response from Department for Education
    Page 2 · response
    Published 17 March 2022

    Open published response

    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

    Commissioners are responsible for ensuring locally appropriate health and social care services, including services for people with complex needs.

    Verbatim wording from the response

    “You may wish to know that under the Equality Act (2010), health and social care organisations must make reasonable adjustments to ensure that disabled people are not disadvantaged. Commissioners are responsible for ensuring the provision of services based on the local needs of their population, including for people with learning disabilities, mental health problems and complex physical needs. Commissioners should take into consideration any relevant guidance, such as those published by the National Institute for Health and Care Excellence in designing their local services.”

    Source location

    Response from Department of Health and Social Care
    Page 1 · response
    Published 17 March 2022

    Open published response

    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

    NELFT was commissioned to provide psychological and psychosocial interventions, not solely autism and learning-disability diagnostic services.

    Verbatim wording from the response

    “3. Concern that there was a lack of psychosocial and psychological therapies offered in this case. This was compounded by the information shared that NELFT may not have been commissioned to provide anything other than a diagnostic service for those presenting with autism and learning disabilities rather than an overt mental health issue.”

    Source location

    Response from Kent and Medway Clinical Commissioning Group
    Page 3 · response
    Published 17 March 2022

    Open published response

Actions and positions describe what organisations say in published responses. Implementation is not independently verified.

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Data last updated 7 September 2026