Recurring concern

Failure to recognise learning disabilities and associated support needs in healthcare

Get email alerts

Request correction

First reported 17 Dec 2019•Latest report 28 May 2026

Definition

What this concern includes

Includes failures to recognise a known or apparent learning disability and to identify the directly associated need for adapted communication, engagement or support.

Not included

Generic availability of learning-disability liaison services without a recognition failure
All healthcare quality or access concerns affecting people with learning disabilities
Failure to provide a specific reasonable adjustment after the need was reliably recognised

Reports: 5
Individual concerns: 5
Date range: 2019–2026
Stated actions: 8

Reports over time

Reports about this concern issued each year.

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

Most frequent recipients

Reports about this concern sent to each recipient.

Department of Health and Social Care2

Greater Manchester Health and Social Care Partnership2

Greater Manchester Integrated Care Partnership1

Mid and South Essex NHS Foundation Trust1

NHS England1

NHS Essex Integrated Care Board1

Stockport Borough Council1

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.

28 May2026
Essex
Concerns raised1
1. Failure to consider learning difficulties when providing anticoagulation care
This report raised 12 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response 1
1. Action
  Introduce a pathway prompt for communication support, family or carer involvement, reasonable adjustments and advocacy for vulnerable patients, with staff briefing and documentation audits.
  Stated by Mid and South Essex NHS Foundation TrustStated planned
AI-generated summary

Lacey Carole Anne HEATH · 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

Lacey Carole Anne HEATH died on 16 February 2025 after collapsing at home and suffering cardiac arrest en route to hospital. The death followed thrombosis and complete stenosis of her mechanical aortic valve in the context of sub-therapeutic anticoagulation. Concerns included difficulty maintaining therapeutic anticoagulation, lack of access to affordable at-home monitoring, absence of a funding application, insufficient medical review or haematology referral, and inadequate clinical records.

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 consider learning difficulties when providing anticoagulation care
Wider context from the report
“5. No application for funding was made on behalf of Ms Heath by the Trust nor was this explained to Ms Heath who a very quiet, shy lady who always relied on her very loving family to assist her with appointments and could not advocate for herself. There was no consideration if Ms Heath had any learning difficulties and it was noted that there was a developmental delay in her medical records. Evidence at the inquest was Ms Heath experienced this as clinicians not caring about her and she became very despondent about the failure to achieve a therapeutic range. ”
Source location
Lacey Carole Anne HEATH · 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
Introduce a pathway prompt for communication support, family or carer involvement, reasonable adjustments and advocacy for vulnerable patients, with staff briefing and documentation audits.

Verbatim wording from the response
“By the end of October 2026, we plan to introduce a prompt within the high-risk anticoagulation pathway requiring clinicians to consider whether the patient may need additional communication support, family/carer involvement, reasonable adjustments or advocacy where records or presentation suggest vulnerability, developmental delay, difficulty self-advocating or reduced understanding of risk.”

Source location
Response from Mid & South Essex NHS Foundation Trust
Page 3 · response
Published 6 August 2026
Open published response
21 Aug2024
Manchester North
Concerns raised1
1. Lack of recognition of learning disability as a factor in patient engagement
This report raised 2 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response 2
1. Action
  Have Primary Care Assistant Practitioners work with community learning-disability services to contact overdue individuals, identify barriers and encourage annual health checks.
  Stated by NHS Greater Manchester Integrated Care BoardStated in progress
2. Action
  Develop a Prevention of Adults not Brought Strategy addressing reasonable-adjustment awareness, workforce education and identification of adults at risk of missed appointments.
  Stated by NHS Greater Manchester Integrated Care BoardStated in progress
AI-generated summary

Beverley Stanisauskis · 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

Beverley Stanisauskis was admitted to hospital with significant blood loss from gastrointestinal bleeding and likely pneumonia, and died on 18 January 2024 despite treatment. She had a learning disability, lived alone, and had not been seen by her GP practice for 10 years. The principal concern was that primary care did not recognise that her learning disability may have contributed to her lack of engagement, and did not involve the learning disability team or make attempts to communicate with her through a doctor.

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 recognition of learning disability as a factor in patient engagement
Wider context from the report
“1. There was a lack of recognition in the primary care setting that the patient’s known learning disability may have been a factor in their lack of engagement. No attempts were made to speak to or for a doctor to the patient and there was a lack of involvement from the learning disability team. ”
Source location
Beverley Stanisauskis · 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
Have Primary Care Assistant Practitioners work with community learning-disability services to contact overdue individuals, identify barriers and encourage annual health checks.

Verbatim wording from the response
“• Employed Primary Care Assistant Practitioners who will work alongside GP practices to validate their Learning Disabilities registers and identify those hard-to-reach individuals who have not been seen by their GP within the last 12 months or have not attended for their annual health check within the last 12 months.”

Source location
Response from GM ICB
Page 4 · response
Published 30 August 2024
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
Develop a Prevention of Adults not Brought Strategy addressing reasonable-adjustment awareness, workforce education and identification of adults at risk of missed appointments.

Verbatim wording from the response
“Within the improvement plan, one of the key priorities is the development of a Prevention of Adults not Brought Strategy. This strategy will look to raise awareness of reasonable adjustments, improve whole workforce education in relation to reasonable adjustments and support services to identify those at risk of not being brought to appointments. This strategy will focus on adults with a learning disability who are at risk of not being brought to appointments, however the principles can apply to all vulnerable adults who may find it hard to access services.”

Source location
Response from GM ICB
Page 4 · response
Published 30 August 2024
Open published response
17 Jul2022
Manchester South
Concerns raised1
1. Failure to recognise significant learning difficulties in hospital
This report raised 4 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Respondent positions 1
1. Position
  Existing safeguarding processes for patients with learning difficulties are considered robust, despite failing on this occasion.
  Stated by NHS Greater Manchester Integrated Care BoardExisting arrangements considered sufficient
AI-generated summary

Darren Jones · 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

Darren Jones, who had severe learning disabilities, a long-term catheter and chronic kidney disease, was admitted to Stepping Hill Hospital after unsuccessful catheter changes in the community and Emergency Department. He deteriorated despite treatment for sepsis and died at the hospital on 22 October 2021. The concerns included pressures on community district nursing services, insufficient recognition of his learning difficulties and support needs in hospital, a dispute between Local Authorities affecting respite care and catheter-care training, and the absence of a commissioned LeDeR 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 recognise significant learning difficulties in hospital
Wider context from the report
“2. Mr Jones had significant learning difficulties which were not fully recognised at the hospital to ensure that he was provided with support and that an IMCA was put in place to ensure his best interests were met. The Inquest heard evidence that it was important that all clinicians and health care professionals were clear and understood how to effectively support someone with a learning disability to ensure they were given the best and most appropriate care; ”
Source location
Darren Jones · 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
Existing safeguarding processes for patients with learning difficulties are considered robust, despite failing on this occasion.

Verbatim wording from the response
“We are satisfied that there is a robust process in place for the support of patients with learning difficulties but acknowledge that the process failed on this occasion which is highly regrettable. Appropriate steps have been taken to ensure wider team awareness for the benefit of future patients.”

Source location
Response from NHS Greater Manchester
Page 2 · response
Published 27 September 2022
Open published response
24 Dec2019
Manchester South
Concerns raised1
1. Failure to recognise and put in place reasonable adjustment care plans in acute hospital departments
This report raised 10 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response 3
1. Action
  Develop and test a standardised learning disability and autism training package with Health Education England and Skills for Care.
  Stated by Department of Health and Social CareStated in progress
2. Action
  Introduce mandatory learning disability and autism training for health and care staff.
  Stated by Department of Health and Social CareStated planned
3. Action
  Require reasonable adjustment care plans for adult inpatients, audit compliance, and use electronic alerts and daily emails to notify senior nurses.
  Stated by NHS Greater Manchester Integrated Care BoardStated completed
Respondent positions 1
1. Position
  The local NHS is expected to reflect on the LeDeR findings and address local failings in care for people with learning disabilities.
  Stated by Department of Health and Social CareRedirects responsibility
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 recognise and put in place reasonable adjustment care plans in acute hospital departments
Wider context from the report
“1. The inquest heard that upon her admission to hospital the Emergency Department, where she spent a prolonged period of time, and Acute Medical Unit (AMU), had not recognised the need for a reasonable adjustment care plan to help them understand her complex needs. One was not put in place until she reached a medical ward. The trust had taken steps to rectify the position and avoid it happening again. The inquest heard that it was unclear if nationally there was a clear understanding in Emergency Departments and AMU's of the need for reasonable care adjustment plans and the impact that lack of provision could have on delivering effective care to those with learning disabilities in an acute setting; ”
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 action was interpreted

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

PFD Monitor interpretation
Require reasonable adjustment care plans for adult inpatients, audit compliance, and use electronic alerts and daily emails to notify senior nurses.

Verbatim wording from the response
“All adult patients who are in-patients of the Trust must have in place a Reasonable Adjustment Care Plan. As with core care plans the aim is that these are commenced within the first 24 hours of admission, therefore for many patients their care plan will be commenced on the Assessment Unit, whether this is the medical or surgical unit.”

Source location
2019-0454-Response-from-Greater-Manchester-Health-and-social-Care-Partnership-Redacted
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
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
17 Dec2019
Manchester South
Concerns raised1
1. Failure of treating physicians to understand the complexity of learning disability and communication issues
This report raised 9 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response 2
1. Action
  Develop and test a standardised learning disability and autism training package for health and care staff.
  Stated by Helen Whatley MPStated in progress
2. Action
  Introduce mandatory learning disability and autism training for health and care staff.
  Stated by Helen Whatley MPStated planned
Respondent positions 2
1. Position
  Medical treatment decisions fall outside the Council’s responsibility, so it cannot comment on the individual’s hospital treatment.
  Stated by Stockport Borough CouncilOutside remit
1. Position
  The local NHS is expected to reflect on the LeDeR findings and address identified local failings in care.
  Stated by Helen Whatley MPRedirects responsibility
AI-generated summary

Lewis Victor Mendelson · 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

Lewis Victor Mendelson, who had profound learning and physical disabilities, became unwell after vomiting on 8 May 2019, was taken to hospital, later received end-of-life care, and died at home on 16 May 2019. The concerns included the absence of a DoLS authorisation, statutory care review and allocated social worker, as well as hospital treatment and end-of-life decisions without a formal best interests meeting or IMCA involvement.

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 of treating physicians to understand the complexity of learning disability and communication issues
Wider context from the report
“2. He was treated in hospital with no IMCA in place or formal best interests meeting taking place. As a result it was unclear if the treating physicians understood the complexity of his learning disability and communication issues that flowed from his disability. The inquest heard that repeated attempts were made to insert a nasogastric tube causing him great distress and where there was limited evidence that it would be beneficial; ”
Source location
Lewis Victor Mendelson · 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
Develop and test a standardised learning disability and autism training package for health and care staff.

Verbatim wording from the response
“One of the commonly reported learning points in local LeDeR reviews is the need for learning disability awareness training for staff in health and social care settings.”

Source location
2019-0434-Response-from-the-Department-of-Health-and-Pensions-1
Page 4 · response
Published 31 December 2019
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
“On 5 November 2019, we published our response to the consultation on mandatory learning disability and autism training for health and care staff⁸. We are now working with Health Education England and Skills for Care to develop and test, during 2020/2021, a standardised training package, backed by £1.4million investment. Work is already underway to develop the training and testing will take place in a variety of health and social care settings to help shape how it will be rolled out and delivered in future. Our plans to introduce mandatory training will go a long way to ensuring more people receive the safe, compassionate and informed care they have a right to expect.”

Source location
2019-0434-Response-from-the-Department-of-Health-and-Pensions-1
Page 4 · response
Published 31 December 2019
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
Medical treatment decisions fall outside the Council’s responsibility, so it cannot comment on the individual’s hospital treatment.

Verbatim wording from the response
“This response solely addresses the concerns under paragraph 1, “The MATTER OF CONCERN”. Stockport Metropolitan Borough Council are unable to comment in respect of paragraph 2 which refers to the individual’s hospital treatment as, in accordance with the Mental Capacity Act 2005, the decision maker for best interest decisions in relation to medical treatment had been the NHS Trust. The arrangement of an IMCA and formal best interests meeting had been the responsibility of the Trust as this had concerned medical decisions. In this instance the NHS Trust would have been under a duty to consult with Stockport Council as stated in the Mental Capacity Act “...anyone engaged in caring for the person or interested in his welfare...”. Ultimately, if the matter had gone to the Court of Protection, the NHS Trust would have been the applicant.”

Source location
2019-0434-Response-from-Stockport-Council_Redacted
Page 1 · response
Published 31 December 2019
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 identified local failings in care.

Verbatim wording from the response
“The Programme systematically reviews the deaths of all people with a learning disability, aged four years and above, that are notified to it. The Programme enables a detailed picture to be built of key improvements that are needed both locally and at a national level, to reduce the inequality in life expectancy between people with a learning disability, and those without.”

Source location
2019-0434-Response-from-the-Department-of-Health-and-Pensions-1
Page 4 · response
Published 31 December 2019
Open published response

Data last updated 7 September 2026

What this concern includes

Not included

Reports over time

Concerns raised1

Failure to consider learning difficulties when providing anticoagulation care

Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.1

Concerns raised1

Lack of recognition of learning disability as a factor in patient engagement

Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.2

Concerns raised1

Failure to recognise significant learning difficulties in hospital

Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1

Concerns raised1

Failure to recognise and put in place reasonable adjustment care plans in acute hospital departments

Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.3

Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1

Concerns raised1

Failure of treating physicians to understand the complexity of learning disability and communication issues

Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.2

Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.2

Actions described in response 1

Actions described in response 2

Respondent positions 1

Actions described in response 3

Respondent positions 1

Actions described in response 2

Respondent positions 2