Recurring concern

Unreliable coordination of specialist learning-disability support in healthcare

First to latest report 24 Dec 2019 — 14 Jul 2025

Reports that mention this concern
3
Times this concern has been raised
4
Stated actions linked to this concern
4

What this concern includes

Includes failures in healthcare arrangements to identify, coordinate, request, provide or maintain specialist learning-disability support, including liaison with learning-disability services and specialist nursing input where this support is needed for safe communication or care.

What is not included
  • Excludes general learning-disability recognition failures where specialist support is not the deficient control.
  • Excludes generic communication, staffing, training or documentation deficiencies unless they directly impair coordination or provision of specialist learning-disability support.
  • Excludes failures in specialist support outside healthcare unless the assertion explicitly concerns the same healthcare support arrangement.
  • Excludes the existing narrower concern concerning learning-disability liaison support within hospital care when the assertion is confined to that hospital-based liaison function.

Reports and published responses 3 reports

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

  1. West Yorkshire (Western)

    AI-generated summary

    Myles Edward SCRIVEN · 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

    Myles Edward Scriven died at Huddersfield Royal Infirmary on 16 April 2023. The report states that he had several contacts with Dalton Surgery while suffering from an ongoing pulmonary embolism, none of which resulted in referral to secondary care, and that the handling of his care contributed to his death. Concerns also included insufficient adjustments and understanding of his autism and learning disabilities, failure to record numeric observations properly, and failure to undertake a rigorous internal review.

    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 liaise with the Learning Disabilities Service to address missing support arrangements

    Wider context from the report

    “While the rider of Neglect does not attach to the actions of the Dalton Surgery, the fact remains that between 16 and 20 March 2023 Myles had several contacts with the Dalton Surgery while he was suffering with an on going Pulmonary Embolism. Non of these resulted in a referral to secondary care. The combined evidence of three expert witnesses was that the manner in which his care was handled at this stage contributed to his death. The following are concerns that I have arising from the evidence in he Inquest. 1. Ignorance of what was required for Myles in the circumstances of his Learning Disability and Autism - the GPs clearly only had a superficial grasp of the regulatory requirements and realities to do with Learning Disabilities. They are clearly well intentioned and caring but their appreciation and approach seems to have been based entirely on professional experience and good intentions rather than real knowledge of what was required and how to implement it. Notably: •They repeatedly used the words learning difficulties and learning disabilities interchangeably and apparently randomly – I am not told that Myles had a personal preference about which to use that they deferred to. Essentially, they seem to have been ignorant as to the distinction. •They made only the most modest adjustments for Myles's Learning Disabilities and Autism. •They clearly had very little grasp of what the Learning Disabilities Register was and how it worked. Neither of the GPs who gave evidence were able to provide a solid, reliable version of how it operated in their practice, when or/if Myles had been entered on to it, whether it was distinct from the psychiatric review - one seemed to conflate the two and the other said that it was something managed by a Nurse in the practice. It is quite evident that correspondence was coming in from Learning Disabilities Psychiatry but nothing at all from Social Services. This is not something that seems to have triggered any particular reaction at the GP level. They seemed to operate on the basis that the Learning Disabilities ’box had been ticked’ and that nothing further was needed. In fact, Myles seems to have been on the Register from 2020 but by the 20 October 2022 when he had been at hospital in relation to his PE he had no Learning Disability Social Worker and concomitantly no VIP passport on admission to hospital . The GPs clearly had no idea of how important all this was. I heard evidence from a secondary care Learning Disabilities Professional that they, in secondary care, rely a great deal on primary care to get these things sorted out. Here, nothing went back from the Practice to the Learning Disabilities Service to chase these things. 2. The failure of the GP to record numeric observations properly on 20 March 2023. 3. The failure of the Dalton Surgery to undertake any rigorous and detailed internal review for learning purposes after this incident. ”

    Source location

    Myles Edward SCRIVEN · 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

    Collaborate with the Strategic Health Facilitator to review the Learning Disability register and improve communication aids, recall processes and patient resources.

    Verbatim wording from the response

    “f) Engaged with Jessica Atkinson (Strategic Health Facilitator for Kirklees Adult Learning Disability) to jointly review the LD register and enhance communication aids, recall processes, and patient resources. A follow-up visit is planned for October 2025.”

    Source location

    Response from Dalton Surgery
    Page 2 · response
    Published 17 July 2025

    Open published response

  2. East London

    AI-generated summary

    Claire Twinn · 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

    Claire Twinn, a 47-year-old woman with Down’s syndrome, severe learning disability, and complex heart and lung conditions, became unwell and attended hospital with low oxygen saturations and symptoms including cough, sickness, and diarrhoea. She was diagnosed with suspected bilateral pneumonia, discharged on oral antibiotics, and found deceased by her family the following morning. The principal concerns were that she was discharged rather than admitted for monitoring and oxygen therapy, reasonable adjustments and specialised learning disability nursing input were not provided, safety-netting advice was not recorded, and the chest X-ray report was delayed.

    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

    Lack of specialised learning disability nursing input to facilitate clear communication

    Wider context from the report

    “3. Ms Twinn’s treatment did not involve any specialised learning disability nursing input to facilitate clear communication with Ms Twinn. ”

    Source location

    Claire Twinn · Prevention of Future Deaths report
    Page 3 · 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

    Increase proactive attendance by specialist learning-disability nurses in the Emergency Department.

    Verbatim wording from the response

    “For assurance, the LD team will audit the discharge advice given to this patient cohort over a period of one month in the first instance. We are also ensuring greater pro-active attendance”

    Source location

    Response from Barts Health NHS Trust
    Page 1 · response
    Published 30 October 2023

    Open published response

  3. Manchester South

    AI-generated summary

    Julie Helen Taylor · 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

    Julie Helen Taylor, who had Down syndrome and significant learning disabilities, died at Stepping Hill Hospital on 23 September 2018 from pneumonitis following a chicken pox virus infection contracted while awaiting discharge. The concerns included inadequate reasonable-adjustment planning, lack of best-interests meetings and documented decision-making, poor communication between agencies, limited access to suitable learning-disability beds and support, information-sharing difficulties, and delayed recognition of chicken pox.

    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 ensure effective psychiatrist and learning disability team communication in medication and care planning

    Wider context from the report

    “5. Prior to her significant deterioration in the community the inquest heard that there was some communication between her community psychiatrist and the learning disability team. There was limited evidence of a joint approach between the psychiatrist and learning disability team where the prescriber in that team changed the medication. Her consultant was not present at the key meetings at the end of July/August and therefore a clear clinical steer from the psychiatrist was not available to the meetings. It was unclear what expectations there should be nationally around attendance and where a key member of the team could not attend how to ensure effective communication of their views before and after meetings; ”

    Source location

    Julie Helen Taylor · Prevention of Future Deaths report
    Page 3 · 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

    Unavailability of appropriately trained wraparound support and care for people with learning disabilities in acute settings

    Wider context from the report

    “6. In her community care setting Julie Taylor had wraparound care provided by carers who knew her well and were trained to deal with someone with her profound needs. In the acute setting that level of support and care was not available. As a result she became distressed and increasingly less compliant with necessary medical interventions. The inquest heard that the issue of support that can be provided to those with a learning disability in an acute setting is not particular to the trust involved in Julie's death but a national one; ”

    Source location

    Julie Helen Taylor · Prevention of Future Deaths report
    Page 3 · 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

    Develop and test a standardised learning disability and autism training package with Health Education England and Skills for Care.

    Verbatim wording from the response

    “disabilities. For this reason, we consulted on the introduction of mandatory learning disability and autism training for health and care staff.”

    Source location

    2019-0454-Response-from-the-Department-of-Health-and-Social-Care
    Page 3 · response
    Published 7 January 2020

    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

    Introduce mandatory learning disability and autism training for health and care staff.

    Verbatim wording from the response

    “disabilities. For this reason, we consulted on the introduction of mandatory learning disability and autism training for health and care staff.”

    Source location

    2019-0454-Response-from-the-Department-of-Health-and-Social-Care
    Page 3 · response
    Published 7 January 2020

    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 local NHS is expected to reflect on the LeDeR findings and address local failings in care for people with learning disabilities.

    Verbatim wording from the response

    “I am advised by NHS England and NHS Improvement that Ms Taylor’s death is currently being reviewed under the LeDeR process and I expect the local NHS to reflect on the findings of the review and take action to address any failings in the care provided locally for people with a learning disability. I have also asked officials to bring your report to the attention of the National Director for Learning Disabilities, Ray James, who is leading work nationally to improve services for people with learning disabilities and/or autism.”

    Source location

    2019-0454-Response-from-the-Department-of-Health-and-Social-Care
    Page 2 · response
    Published 7 January 2020

    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

    Community care matters in Derbyshire fall outside the Greater Manchester Health and Social Care Partnership’s remit.

    Verbatim wording from the response

    “You have also identified a number of areas regarding community care in Derbyshire. As Derbyshire does not fall under the remit of the Greater Manchester Health and Social Care Partnership we are unable to provide a response to those issues.”

    Source location

    2019-0454-Response-from-Greater-Manchester-Health-and-social-Care-Partnership-Redacted
    Page 2 · response
    Published 7 January 2020

    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