Recurring concern

Unreliable learning-disability liaison support in hospital care

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First reported 30 Sep 2019•Latest report 13 May 2025

Definition

What this concern includes

Includes failures in dedicated learning-disability liaison support within hospital care, including unavailable liaison roles, failure to offer or arrange liaison-nurse involvement, and insufficient coverage or support for emergency-department and other hospital staff when caring for patients with learning disabilities.

Not included

  • Excludes generic emergency-department staffing, weekend service reductions or communication deficiencies unless they directly impair dedicated learning-disability liaison support.
  • Excludes general learning-disability recognition, diagnosis, reasonable-adjustment or clinical-treatment failures where liaison support is not the deficient control.
  • Excludes community or primary-care learning-disability team involvement unless the assertion explicitly concerns the same hospital-based liaison-support function.
  • Excludes failures occurring after appropriate liaison support has been provided when the remaining issue is the quality of clinical care or treatment.
Reports
2

Distinct published reports

Individual concerns
3

A report can raise multiple concerns

Date range
2019–2025

First to latest report issue date

Stated actions
2

Described in published responses

Reports over time

Reports over time

Reports about this concern issued each year.

* 2026 is projected from reports observed to 7 Sep 2026.

Most frequent recipients

Most frequent recipients

Reports about this concern sent to each recipient.

Department of Health and Social Care2
Care Quality Commission1
NHS England1
Royal College of Emergency Medicine1
Royal College of Paediatrics and Child Health1
Royal Surrey NHS Foundation Trust1

Concerns and responses across reports

Only concerns grouped under this recurring concern are included. Select any concern, action or position to view the source wording.

  1. Surrey

    AI-generated summary

    Rose Annie Harfleet · 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

    Rose Annie Harfleet, aged 12, died in hospital on 30 January 2024 after presenting with abdominal pain and vomiting, later identified as a caecal volvulus causing intestinal obstruction and bowel ischaemia. The report raised concerns about failures to recognise and respond to her deterioration, obtain and act on information from her mother, provide appropriate monitoring and surgical review, and offer learning disability liaison support. It also identified a lack of guidance for managing and consulting with children with profound disabilities in hospital settings.

    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 routinely offer learning disability liaison nurse support in the emergency department

    Wider context from the report

    “4. LeDeR Role Rose’s admission was during the working week, yet there was no consideration or offer given to Rose or her mother during her time in the Emergency Department to being introduced to a learning Disability Liaison Nurse. This led to Rose’s mother being unsupported during this admission or for a nursing professional to be able to liaise and advocate for Rose and her mother with medical and nursing staff in the emergency department. This again gives rise to a concern that patients such as Rose and her mother are adversely impacted on the care that they receive in the absence of local and national guidelines that this should be routinely available and offered as a matter of course. ”

    Source location

    Rose Annie Harfleet · 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

    Remind emergency-department staff to contact the Learning Disability Nurse during working hours for support to staff, patients and families.

    Verbatim wording from the response

    “The CYP Learning Disabilities and Autism Nurse Specialist works Monday – Friday, 08:00 – 16:00. Rose arrived in the Emergency Department on Monday 29th January and an initial assessment was undertaken at 13:14. Rose was then checked by an Emergency Doctor at 16:27. Very sadly, Rose passed away before the CYP Learning Disability Nurse returned on Tuesday 30th January, when the CYP Learning Disability Nurse provided support to Rose’s family. There was potentially an opportunity for the CYP Learning Disability Nurse to have been contacted by the Emergency Department team following Rose’s arrival at 13.14 and prior to the clerking by the Emergency Doctor. The Emergency Department team have been reminded of the presence of the Learning Disability Nurse during working hours and that they can be contacted to help support staff, patients and their families.”

    Source location

    Response from Royal Surrey County Hospital NHS Foundation Trust
    Page 4 · response
    Published 20 May 2025

    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

    Publish a national competency framework for learning disability liaison nurses.

    Verbatim wording from the response

    “NHS England is due to publish a national competency framework for learning disability liaison nurses, which will help to strengthen some of the processes which determine when the input of liaison nurses should be sought. In addition, it will help to address some of the gaps which have been observed whereby, in some instances, learning”

    Source location

    Response from NHS England
    Page 1 · response
    Published 20 May 2025

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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

    NHS England will address the concern about Learning Disability Liaison Nurses and other relevant actions in a separate response.

    Verbatim wording from the response

    “I will outline actions being taken within the Department to address the first three concerns raised in the report. As NHS England oversees workforce within the NHS, it will address the final concern in its separate response and any other relevant actions on the other concerns raised.”

    Source location

    Response from DHSC
    Page 1 · response
    Published 20 May 2025

    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

    A national protocol for engaging learning disability liaison nurses is not considered necessary because hospitals have varied referral processes and should retain autonomy.

    Verbatim wording from the response

    “From the standpoint of learning disability liaison nurses, there is currently no national accepted protocol for how and when liaison nurses should be engaged in someone’s care. This is due to the fact that different hospitals have a variety of processes for enacting secondary referrals and, to a degree, they should be afforded this autonomy. However, when it is clearly specified and evident that a patient has a specific diagnosis and particular needs arising from their disability then, in accordance with the Trust’s duties under the Equality Act 2010, they should endeavour to make ‘reasonable adjustments’. In cases such as Rose’s, the provision of learning disability liaison nurses is one such adjustment, affording patients and their families a level of assurance that their care will be ‘adjusted’ as needed.”

    Source location

    Response from NHS England
    Page 1 · response
    Published 20 May 2025

    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 Trust is responsible for determining how patients access reasonable adjustments, including learning disability liaison nurse support, through local processes.

    Verbatim wording from the response

    “The Trust’s services will still need to determine how they ensure access to reasonable adjustments, such as the input of learning disability liaison nurse support. As above, I note that your Report has also been addressed to the Trust and I would refer you to their response for further information on their local processes. NHS England will also consider their response in due course.”

    Source location

    Response from NHS England
    Page 2 · response
    Published 20 May 2025

    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

    Provision of nursing care and access to learning disability liaison nurses fall outside the respondent’s authority.

    Verbatim wording from the response

    “Good medical practice, produced by the General Medical Council, sets out the principles, values, and standards of professional behaviour expected of all doctors. This includes requirements that doctors must “treat all patients fairly and without discrimination, including those with disabilities” and that “doctors are required to consider and respond to the communication needs of all patients, including those with disabilities.” RCPCH has no authority over provision of nursing care on wards but notes that the Nursing and Midwifery Council states how nurses “must take account of individual differences, capabilities and needs” and “use a range of communication skills and technologies to support person-centred care and enhance quality and safety”.”

    Source location

    Response from Royal College of Paediatrics
    Page 2 · response
    Published 20 May 2025

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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

    Providing learning disability nurses within individual hospitals is outside the respondent’s remit.

    Verbatim wording from the response

    “4. The Role of the Learning Disability Nurse The RCEM is fully supportive of Learning Disability Nurses taking on a liaison role within the ED setting for appropriate patients. The RCEM Learning Disability toolkit specifically recommends that a member of the ED staff is identified as a link with the hospital learning disability team. The provision of Learning Disability Nurses within individual hospitals is outside of the remit of the RCEM.”

    Source location

    Response from Royal College of Emergency Medicine
    Page 2 · response
    Published 20 May 2025

    Open published response
  2. Manchester South

    AI-generated summary

    Julie Ann Barrow · 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 Ann Barrow, who had significant learning disabilities, was admitted to hospital on several occasions for perianal pain, rectal bleeding and haemorrhoids. Following treatment for adjustment disorder and significant sedation, she fell at her family home on 1 April 2019, sustained an unsurvivable brain injury and died in hospital the next day. The principal concerns included the absence of a best interests meeting and reasonable adjustment care plan, ineffective communication and understanding of her needs, inadequate support for her parents, and the loss of the learning disability liaison role.

    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

    Reduced safeguarding team capacity to support people with learning disabilities in hospital

    Wider context from the report

    “5. The inquest was told by the safeguarding team that cuts by the Local Authority had resulted in the loss of the learning disability liaison role, had reduced the ability of the safeguarding team to support people with learning disabilities within the hospital. ”

    Source location

    Julie Ann Barrow · 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

    Unavailability of a learning disability liaison role within the hospital

    Wider context from the report

    “5. The inquest was told by the safeguarding team that cuts by the Local Authority had resulted in the loss of the learning disability liaison role, had reduced the ability of the safeguarding team to support people with learning disabilities within the hospital. ”

    Source location

    Julie Ann Barrow · 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

    Local authorities, rather than central government, determine how additional funding is used to support adult social care services.

    Verbatim wording from the response

    “With full take-up of the social care precept⁷ in 2019/20, based on their previous decisions, Stockport Council could receive a total of £52.8million additional funding between 2017/18 and 2019/20⁸. It is for local authorities to determine how this funding is used to support adult social care services.”

    Source location

    2019-0325-Response-from-The-Department-of-Health-and-Social-Care
    Page 4 · response
    Published 8 November 2019

    Open published response
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Data last updated 7 September 2026