Recurring concern

Failure to provide required reasonable adjustments for patients with disabilities

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First reported 2 Feb 2016•Latest report 27 May 2026

Definition

What this concern includes

Includes failures of the reasonable-adjustments process specifically intended to support patients with disabilities, learning disabilities or autism across assessment, care planning, communication, treatment and clinical decision-making.

Not included

Excludes generic failures to create care plans, discharge plans or packages of care where no disability-related reasonable-adjustment requirement is identified.
Excludes generic communication, staffing, training, documentation or clinical decision-making failures that are not explicitly tied to providing reasonable adjustments for a disabled patient.
Excludes adjustments for beneficiaries without an identified disability-related need.

Reports: 10
Individual concerns: 11
Date range: 2016–2026
Stated actions: 32

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 Care5

NHS England4

Care Quality Commission2

Barts Health NHS Trust1

Calderdale and Huddersfield NHS Foundation Trust1

Cygnet Health Care Limited1

Dalton Surgery1

Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust1

Greater Manchester Health and Social Care Partnership1

Mid and South Essex NHS Foundation Trust1

NHS Humber and North Yorkshire Integrated Care Board1

Tees, Esk and Wear Valleys 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.

27 May2026
Essex
Concerns raised1
1. Lack of communication adjustments and plans for autistic patients with learning difficulties
This report raised 7 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
  Use Learning Disability and Autism Health Passports to identify communication and sensory needs and guide reasonable adjustments.
  Stated by Mid and South Essex NHS Foundation TrustStated completed
2. Action
  Provide specialist Learning Disability Team and Autism Lead support to clinical teams developing individual care plans and making reasonable adjustments.
  Stated by Mid and South Essex NHS Foundation TrustStated completed
AI-generated summary

Abigail Louise SMITH · 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

Abigail Louise Smith was found at Braintree Recreation Ground on 15 February 2022 after attempting to suspend herself; resuscitation was unsuccessful and she was pronounced deceased at 00:08 on 16 February 2022. The report identifies concerns about inadequate trained staffing and observation, unsuitable care arrangements, access to ligature materials, insufficient risk assessments and care plans, communication adjustments for autism and learning disability, and an unsafe discharge from hospital.

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 communication adjustments and plans for autistic patients with learning difficulties
Wider context from the report
“6. No adjustments or plans were made for communication for Abbi as a patient with Autism and learning difficulty ”
Source location
Abigail Louise SMITH · 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
Use Learning Disability and Autism Health Passports to identify communication and sensory needs and guide reasonable adjustments.

Verbatim wording from the response
“For patients with Learning Disabilities, a Hospital Passport should be completed which includes questions such as ‘How I communicate and how you communicate with me’ and any sensory issues which may impact communication.”

Source location
Response from Mid & South Essex NHS Foundation Trust
Page 3 · response
Published 13 August 2026
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
Provide specialist Learning Disability Team and Autism Lead support to clinical teams developing individual care plans and making reasonable adjustments.

Verbatim wording from the response
“Our specialist Learning Disabilities (‘LD’) Team is trained to support and advise staff on patient communication needs; any sensory needs or sensitivities; pain recognition; interaction with medical history and any medication regimens; and to ensure reasonable adjustments are considered in line with the Equality Act 2010 and the Mental Capacity Act 2005. For example, this may be facilitating a patient being placed in a quiet area away from populated waiting rooms and information being given that is free of jargon and medical terminology.”

Source location
Response from Mid & South Essex NHS Foundation Trust
Page 3 · response
Published 13 August 2026
Open published response
27 May2026
Essex
Concerns raised1
1. Failure to make adjustments or adaptations to communications and therapy for a patient with autism and learning difficulties
This report raised 7 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.

No linked response statements
No respondent-stated action or position is linked to these concerns in the published data.
AI-generated summary

Abigail Louise SMITH · 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

Abigail Louise Smith was found at Braintree Recreation Ground on 15 February 2022 after unsuccessfully trying to suspend herself, and was pronounced dead at 00:08 on 16 February 2022 from compression of the neck. The report describes concerns about failures in mental-health care, including inaccurate records and diagnosis information, inadequate adjustments for autism and learning difficulties, medication-management problems, and discharge from detention without an effective plan to mitigate a known and immediate risk of suicide.

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 make adjustments or adaptations to communications and therapy for a patient with autism and learning difficulties
Wider context from the report
“4. It was known that Abbi was diagnosed with Autism in her childhood and had learning difficulties. Abbi informed the specialist team that she found group work difficult. No adjustments or adaptions were made to communications with or therapy offered to Abbi. ”
Source location
Abigail Louise SMITH · Prevention of Future Deaths report
Page 3 · concerns
Open source report
14 Jul2025
West Yorkshire (Western)
Concerns raised1
1. Failure to make appropriate adjustments for patients with learning disabilities and autism
This report raised 5 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 9
1. Action
  Review and update inspection guidance on assessing safe care for people with learning disabilities and autistic people.
  Stated by Care Quality CommissionStated in progress
2. Action
  Implement reasonable adjustments including extended appointments, easy-read correspondence, health passports and proactive recalls for patients with Learning Disabilities and Autism.
  Stated by Dalton SurgeryStated completed
3. Action
  Train the Practice Manager to discuss reasonable adjustments with patients.
  Stated by Dalton SurgeryStated completed
1. Action
  Collaborate with the Strategic Health Facilitator to review the Learning Disability register and improve communication aids, recall processes and patient resources.
  Stated by Dalton SurgeryStated in progress
2. Action
  Extend Learning Disability and Autism Health Check appointments from 45 minutes to one hour.
  Stated by Dalton SurgeryStated completed
3. Action
  Adjust Learning Disability health-check invitations and train staff to manage tailored invitations appropriately.
  Stated by Dalton SurgeryStated completed
4. Action
  Roll out Oliver McGowan mandatory learning disability and autism training across the health and adult social care workforce.
  Stated by NHS EnglandStated in progress
5. Action
  Maintain the reasonable adjustment digital flag so services can record, share and view patients’ adjustment needs.
  Stated by NHS EnglandStated completed
6. Action
  Roll out staff e-learning supporting recording of reasonable adjustment needs across health and care services.
  Stated by NHS EnglandStated completed
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 make appropriate adjustments for patients with learning disabilities and autism
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
Review and update inspection guidance on assessing safe care for people with learning disabilities and autistic people.

Verbatim wording from the response
“In response to the known challenges faced by people with a learning disability and autistic people when they access primary care services, as well as feedback from people with lived experience, CQC had already begun a program of work focusing on the health inequalities faced by this population group. This includes taking action to review how we consider whether a GP practice is providing safe care and treatment for people with a learning disability and autistic people. Specifically, we are reviewing and will update the guidance in respect of this, that we provide for our inspection teams to follow. This aims to prompt inspectors to carry out a more thorough assessment than currently takes place and give them the necessary tools to do so. Our regulatory leadership teams are leading on this.”

Source location
Response from Care Quality Commission (2)
Page 2 · response
Published 17 July 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
Implement reasonable adjustments including extended appointments, easy-read correspondence, health passports and proactive recalls for patients with Learning Disabilities and Autism.

Verbatim wording from the response
“d) Implemented standard reasonable adjustments for patients, including extended appointment times, easy-read correspondence, health passports, and proactive recall systems.”

Source location
Response from Dalton Surgery
Page 2 · response
Published 17 July 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
Train the Practice Manager to discuss reasonable adjustments with patients.

Verbatim wording from the response
“e) Practice Manager received bespoke training on discussing reasonable adjustments with patients.”

Source location
Response from Dalton Surgery
Page 2 · response
Published 17 July 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
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
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
Extend Learning Disability and Autism Health Check appointments from 45 minutes to one hour.

Verbatim wording from the response
“g) Extended appointment length for LD and Autism Health Checks from 45 minutes to one hour.”

Source location
Response from Dalton Surgery
Page 2 · response
Published 17 July 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
Adjust Learning Disability health-check invitations and train staff to manage tailored invitations appropriately.

Verbatim wording from the response
“k) Adjusted invitation scheduling for LD health checks to ensure all patients are invited appropriately, with staff trained on tailored invitation management.”

Source location
Response from Dalton Surgery
Page 2 · response
Published 17 July 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
Roll out Oliver McGowan mandatory learning disability and autism training across the health and adult social care workforce.

Verbatim wording from the response
“GPs, receive specific training on learning disability and autism appropriate to their role. On 19 June 2025, NHS England published a Code of Practice which sets out expectations for training content and delivery. This training helps to ensure that staff have the right knowledge and skills to provide safe and informed care.”

Source location
Response from NHS England
Page 2 · response
Published 17 July 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
Maintain the reasonable adjustment digital flag so services can record, share and view patients’ adjustment needs.

Verbatim wording from the response
“The Equality Act 2010 places a legal duty on health and care services to make changes to their approach or provision to ensure services are as accessible for people with disabilities as they are for everyone else. NHS England has introduced the reasonable adjustment digital flag to enable health and care services to record, share and view details of the reasonable adjustments a person needs to support their care.”

Source location
Response from NHS England
Page 2 · response
Published 17 July 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
Roll out staff e-learning supporting recording of reasonable adjustment needs across health and care services.

Verbatim wording from the response
“Organisations are required to use their own systems and processes to record reasonable adjustment needs, and staff e-learning training has been rolled out for all health and care staff to support this.”

Source location
Response from NHS England
Page 2 · response
Published 17 July 2025
Open published response
14 Jul2025
West Yorkshire (Western)
Concerns raised1
1. Lack of required adjustments for patients with learning disabilities and autism
This report raised 3 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 4
1. Action
  Further develop the learning-disability dashboard to support patient identification, care prioritisation, audit compliance and oversight.
  Stated by Calderdale and Huddersfield NHS Foundation TrustStated in progress
2. Action
  Pilot and roll out patient-centred bedside boards across all areas, with evaluation of their impact.
  Stated by Calderdale and Huddersfield NHS Foundation TrustStated in progress
3. Action
  Use standardised ward audits and direct engagement to verify standards, care-plan and passport use, and timely critical medication administration.
  Stated by Calderdale and Huddersfield NHS Foundation TrustStated completed
1. Action
  Undertake weekly detailed audits of learning-disability care, including involvement, senior review and specialist recommendations.
  Stated by Calderdale and Huddersfield NHS Foundation TrustStated completed
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 lack of adjustments for his Autism and Learning Disabilities contributed to incorrect decisions about his care and medication. The principal concern was that existing training, policies and support arrangements were not effectively applied or audited to ensure safe care and medication decisions.

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 required adjustments for patients with learning disabilities and autism
Wider context from the report
“(brief summary of matters of concern) The rider of Neglect attaches to the actions of the Calderdale and Huddersfield NHS Foundation Trust (‘the Trust’). It relates to the lack of adjustments, that were identified as being required to treat Myles safely in the context of his Learning Disabilities (‘LD’) and Autism notably during his admission 20-25 October 2022. It is true that evidence from Trust witnesses has been sufficient to demonstrate that the Trust is aware of the issues arising in this case at least in terms of training and professional input. It has an ongoing programme of training in relation to Learning Disabilities and Autism in clinical care and they have people in post enhancing Learning Disability provision. The crux of the remaining concern is in relation to auditing the impact of all of this in terms of auditing the outcome of this work. To be fair, Trust evidence was that there is now auditing of mental capacity assessments and there is dedicated nursing leadership walkaround of all wards auditing LD and autism policies being applied. However, there is this remaining evidential reality: much of what is now in place was already in place in 2022 – not least key personnel who gave evidence at the Inquest, but also VIP passports, training and all the underlying regulatory underpinning. But in Myles’s case it simply had no impact whatsoever. One witness’s own ‘spot-on’ entries in the EPR on 21 October were just not acted upon by colleagues and had zero effect when he went on leave thereafter. Clinicians were applying Mental Capacity Act principle 1 but not 2. ‘Culturally’ speaking, that one obtaining in secondary care after the witness went on leave seems to have been stuck in another era. So, the question is - how it is proposed to ensure full compliance with best practice and by when? ”
Source location
Myles Edward Scriven · Prevention of Future Deaths report
Page 1 · 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
Further develop the learning-disability dashboard to support patient identification, care prioritisation, audit compliance and oversight.

Verbatim wording from the response
“To support clinical oversight of patients with learning disabilities we are further developing the learning disability dashboard within KP+ (Qlik Sense) digital system. This is a data analytics/reporting tool which has the LD flag built into reporting fields which allows the Trust to identify patients with a learning disability so that clinical teams can use this data to allow prioritisation of care needs and oversight of care delivery.”

Source location
Response from Calderdale and Huddersfield NHS Foundation Trust
Page 3 · response
Published 17 July 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
Pilot and roll out patient-centred bedside boards across all areas, with evaluation of their impact.

Verbatim wording from the response
“We have a Patient Centred Care Group that is a sub - group of the Patient Experience and Involvement Group. This group is led by an Associate Director of Nursing and is responsible for the development of evidence based practice in relation to the delivery of person centred care. We are currently piloting ‘behind the bed boards’ to replace existing boards. These boards describe what is important to patients and provide an opportunity for patients and families to capture key information, questions or concerns for their clinical team. The boards also act as a prompt for patients, relatives and our teams to capture important information in relation to reasonable adjustments or care needs. The boards will be rolled out across all areas by December 2025 with an associated plan to evaluate their impact.”

Source location
Response from Calderdale and Huddersfield NHS Foundation Trust
Page 4 · response
Published 17 July 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
Use standardised ward audits and direct engagement to verify standards, care-plan and passport use, and timely critical medication administration.

Verbatim wording from the response
“Through a standardised audit process (incorporating the national 15 steps challenge of seeing care through patient and relative eyes) and direct ward engagement, nursing leaders verify compliance with legal and regulatory standards, ensure consistent use of care plans and hospital passports, and promote timely administration of critical medications for patients with a learning disability. This provides the opportunity to resolve any issues identified at the point of care with feedback given in real time to the team involved.”

Source location
Response from Calderdale and Huddersfield NHS Foundation Trust
Page 5 · response
Published 17 July 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
Undertake weekly detailed audits of learning-disability care, including involvement, senior review and specialist recommendations.

Verbatim wording from the response
“A more detailed audit is undertaken for patients with a learning disability on a weekly basis that provides an in-depth review of the care being delivered, focusing on patient, family and carer involvement and evidence of a senior review and implementation of any specialist recommendations. The findings from these audits will be discussed at the monthly Quality Assurance Group as well as the Learning Disabilities Group.”

Source location
Response from Calderdale and Huddersfield NHS Foundation Trust
Page 6 · response
Published 17 July 2025
Open published response
16 Oct2023
East London
Concerns raised1
1. Failure to make reasonable adjustments for communication and impaired respiratory function when making clinical decisions
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.
Actions described in response 5
1. Action
  Increase proactive attendance by specialist learning-disability nurses in the Emergency Department.
  Stated by Barts Health NHS TrustStated in progress
2. Action
  Develop a training package on communicating with vulnerable patients, including a learning-disability Emergency Department case study.
  Stated by Barts Health NHS TrustStated completed
3. Action
  Deliver vulnerable-patient communication teaching during induction and monthly consultant meetings.
  Stated by Barts Health NHS TrustStated in progress
1. Action
  Procure a mobile multisensory unit and smaller communication tools for complex patients.
  Stated by Barts Health NHS TrustStated in progress
2. Action
  Roll out Oliver McGowan mandatory learning disability and autism training for health and care staff.
  Stated by Department of Health and Social CareStated in progress
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
Failure to make reasonable adjustments for communication and impaired respiratory function when making clinical decisions
Wider context from the report
“1. Ms Twinn’s disability played a role in the provision of sub-optimal care, reasonable adjustment was not made for; her inability to communicate clearly and her impaired respiratory function when arriving at clinical decisions. ”
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
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 training package on communicating with vulnerable patients, including a learning-disability Emergency Department case study.

Verbatim wording from the response
“A training package has been put together around communicating with vulnerable patients, which includes a case study of a patient with LD in the Emergency Department. It involves looking at factors relating to the clinician, the environment and the patient that might make the situation more complex. Teaching is also taking place on induction and at monthly Consultant meetings. Finally, we are procuring specialist equipment in the form of a multi-sensory mobile unit to be used when needed alongside smaller items, including communication tools, for use with most complex patients.”

Source location
Response from Barts Health NHS Trust
Page 2 · response
Published 30 October 2023
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
Deliver vulnerable-patient communication teaching during induction and monthly consultant meetings.

Verbatim wording from the response
“A training package has been put together around communicating with vulnerable patients, which includes a case study of a patient with LD in the Emergency Department. It involves looking at factors relating to the clinician, the environment and the patient that might make the situation more complex. Teaching is also taking place on induction and at monthly Consultant meetings. Finally, we are procuring specialist equipment in the form of a multi-sensory mobile unit to be used when needed alongside smaller items, including communication tools, for use with most complex patients.”

Source location
Response from Barts Health NHS Trust
Page 2 · response
Published 30 October 2023
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
Procure a mobile multisensory unit and smaller communication tools for complex patients.

Verbatim wording from the response
“A training package has been put together around communicating with vulnerable patients, which includes a case study of a patient with LD in the Emergency Department. It involves looking at factors relating to the clinician, the environment and the patient that might make the situation more complex. Teaching is also taking place on induction and at monthly Consultant meetings. Finally, we are procuring specialist equipment in the form of a multi-sensory mobile unit to be used when needed alongside smaller items, including communication tools, for use with most complex patients.”

Source location
Response from Barts Health NHS Trust
Page 2 · response
Published 30 October 2023
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
Roll out Oliver McGowan mandatory learning disability and autism training for health and care staff.

Verbatim wording from the response
“Introducing mandatory training is an important way in which we can address persistent disparities in health and care outcomes for people with a learning disability and autistic people by ensuring that the health and care workforce have the right knowledge and skills, including appropriate communication. That is why, from 1 July 2022, CQC registered service providers are required to ensure their staff receive learning disability and autism training appropriate to their role, as set out in the Health and Care Act 2022.”

Source location
Response from Department of Health and Social Care
Page 2 · response
Published 30 October 2023
Open published response
7 Jun2022
Central and South East Kent
Concerns raised2
1. Unavailability of communication interpretation and advocacy support for callers with learning disabilities
2. Lack of a procedure or specific protocol for callers with learning disabilities
This report raised 1 other concern. 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
  Train health advisors and clinicians to engage appropriately with people with learning disabilities.
  Stated by Department of Health and Social CareStated completed
Respondent positions 1
1. Position
  Existing NHS Pathways training, competency monitoring and adaptive triage, including clinician takeover, are considered sufficient for callers with learning disabilities.
  Stated by Department of Health and Social CareExisting arrangements considered sufficient
AI-generated summary

Daniel Robert Ludlam · 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

Daniel Robert Ludlam died at the scene on 30 December 2019 after an obstructed hiatus hernia caused gastrointestinal haemorrhage and hypovolemic shock. Concerns included that NHS Pathways triage did not specifically account for callers with learning disabilities, and that the absence of a suitable procedure could lead to incorrect triage or delays in sending paramedic support, particularly where no carer was available to assist communication.

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
Unavailability of communication interpretation and advocacy support for callers with learning disabilities
Wider context from the report
“(1) The NHS Pathways triage system for the calls that were made did not appear to take specific account of the patient who had a learning disability. Daniel could not communicate accurately his symptoms, and specifically would give the responses that he felt the call handler wanted to hear. He could not understand the questions being asked during the NHS Pathways triage. (2) There appears to be no procedure or specific protocol in place to deal with a caller with learning disabilities, save for an early exit from the triage Pathway to request a clinician review. I am concerned that in similar future cases, either the information being given will not result in the correct triage category being reached, or any exit from the pathway to seek clinician input may result in a delay in sending out a paramedic crew. (3) The carer assisting Daniel had to interpret the questions from the call handler in a way that Daniel could easily understand and then relay the responses back. In the future a call may come in from someone with learning disabilities who does not have a carer present to assist with the interpretation of the questions and to advocate on their behalf. Without there being a policy in place to deal with callers who cannot easily communicate or understand the questions, there is a risk of future death which could occur. ”
Source location
Daniel Robert Ludlam · 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
Lack of a procedure or specific protocol for callers with learning disabilities
Wider context from the report
“(1) The NHS Pathways triage system for the calls that were made did not appear to take specific account of the patient who had a learning disability. Daniel could not communicate accurately his symptoms, and specifically would give the responses that he felt the call handler wanted to hear. He could not understand the questions being asked during the NHS Pathways triage. (2) There appears to be no procedure or specific protocol in place to deal with a caller with learning disabilities, save for an early exit from the triage Pathway to request a clinician review. I am concerned that in similar future cases, either the information being given will not result in the correct triage category being reached, or any exit from the pathway to seek clinician input may result in a delay in sending out a paramedic crew. (3) The carer assisting Daniel had to interpret the questions from the call handler in a way that Daniel could easily understand and then relay the responses back. In the future a call may come in from someone with learning disabilities who does not have a carer present to assist with the interpretation of the questions and to advocate on their behalf. Without there being a policy in place to deal with callers who cannot easily communicate or understand the questions, there is a risk of future death which could occur. ”
Source location
Daniel Robert Ludlam · 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
Train health advisors and clinicians to engage appropriately with people with learning disabilities.

Verbatim wording from the response
“With reference to your first concern around the system not taking into specific account of patients who have not been able to understand the questions asked, I would like to assure you that all health advisors and clinicians are trained on engaging with people with learning disabilities and this forms part of core training. NHS Pathways staff are monitored against the competency framework so staff competency is checked on an ongoing basis.”

Source location
Response from Department of Health and Social Care
Page 1 · response
Published 20 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
Existing NHS Pathways training, competency monitoring and adaptive triage, including clinician takeover, are considered sufficient for callers with learning disabilities.

Verbatim wording from the response
“With reference to your first concern around the system not taking into specific account of patients who have not been able to understand the questions asked, I would like to assure you that all health advisors and clinicians are trained on engaging with people with learning disabilities and this forms part of core training. NHS Pathways staff are monitored against the competency framework so staff competency is checked on an ongoing basis.”

Source location
Response from Department of Health and Social Care
Page 1 · response
Published 20 September 2022
Open published response
25 Apr2022
North Yorkshire and York including North Yorkshire Western District
Concerns raised1
1. Failure to make timely reasonable sensory and environmental adjustments
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 7
1. Action
  Examine patients with autism and EUPD/BPD diagnoses to assess diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options.
  Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progress
2. Action
  Examine records for diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options for patients with autism and EUPD diagnoses.
  Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progress
3. Action
  Review 134 patients’ autism and EUPD diagnoses, communications, withdrawals, reasonable adjustments and treatment options.
  Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progress
1. Action
  Deliver autism-awareness and trauma-informed training addressing reasonable adjustments, autism-related trauma and staff understanding of autistic people’s needs.
  Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progress
2. Action
  Obtain specialist autism support for community teams to review care quality and reasonable adjustments, while monitoring uptake.
  Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progress
3. Action
  Fund projects improving sensory environments in mental health hospitals through environmental changes, staff training and patient-experience learning.
  Stated by NHS EnglandStated completed
4. Action
  Develop a sensory-friendly resource pack for health trusts and Integrated Care Systems.
  Stated by NHS EnglandStated in progress
Respondent positions 1
1. Position
  TEWV is responsible for delivering core mental health care and making reasonable adjustments for patients with autism.
  Stated by NHS Humber and North Yorkshire Integrated Care BoardRedirects responsibility
AI-generated summary

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
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 make timely reasonable sensory and environmental adjustments
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
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
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
Page 3 · response
Published 27 April 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
Examine records for diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options for patients with autism and EUPD diagnoses.

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
Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
Page 3 · response
Published 27 April 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
Review 134 patients’ autism and EUPD diagnoses, communications, withdrawals, reasonable adjustments and treatment options.

Verbatim wording from the response
“Within the Trust we have now 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 Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 1 · response
Published 27 April 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
Deliver autism-awareness and trauma-informed training addressing reasonable adjustments, autism-related trauma and staff understanding of autistic people’s needs.

Verbatim wording from the response
“The Trust Board have received training in this essential work so that they are better informed, they remain committed to ensuring that it is embedded into clinical journey and subsequent underpinning practice to seek to understand patient needs. Across the Trust we are delivering autism awareness training to our clinical staff with a focus on how to make reasonable adjustments for autistic people so that they can access and benefit from services. Additionally, we are focussing on avoidance of trauma in this training so the potential to traumatise autistic people is reduced. We humbly accept that if everybody (including staff) understood autism better, then trauma such as Zoe experienced would be reduced.”

Source location
Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 3 · response
Published 27 April 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
Obtain specialist autism support for community teams to review care quality and reasonable adjustments, while monitoring uptake.

Verbatim wording from the response
“Within the North Yorkshire teams, and across the trust supervision and support is being sought by the generic community teams on a case-by-case basis from clinical experts, who have an appropriate level of expertise to check and challenge the quality of care being provided. This is not only in relation to the specific care and treatment pathway for the individuals concerned, but also looks at the ability and understanding of the team to provide reasonable adjustments when working with patients who have an autism diagnosis or who present with such traits. This sits alongside the training that is being delivered to local teams to increase knowledge and understanding of these issues.”

Source location
Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 5 · response
Published 27 April 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
Fund projects improving sensory environments in mental health hospitals through environmental changes, staff training and patient-experience learning.

Verbatim wording from the response
“• £4 million for a range of projects across the country to improve the sensory environment of mental health hospitals. There were 40 projects across the country aimed at environmental changes to accommodate sensory needs of autistic people in mental health inpatient settings. The projects delivered changes to the physical environment and/or training for staff on the sensory needs of autistic people and/or learning from the experiences of patients.”

Source location
Response from NHS England
Page 2 · response
Published 27 April 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
Develop a sensory-friendly resource pack for health trusts and Integrated Care Systems.

Verbatim wording from the response
“The University of Reading were also been asked to develop a sensory assessment tool for use in mental health hospitals and we commissioned the National Development Team for Inclusion (NDTi) to develop Ten Sensory Friendly Ward Principles as part of the “It’s Not Rocket Science” work; see here for details. The Ten Principles are focused on the, often quite small, changes needed to ward environments to improve the sensory environment for autistic people. The principles were used to inform the development and delivery of the sensory projects programme in 2021/2022 so that projects had to demonstrate how the principles were used. We are currently developing a sensory friendly resource pack for health Trusts and Integrated Care Systems (ICSs).”

Source location
Response from NHS England
Page 2 · response
Published 27 April 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 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
Page 2 · response
Published 27 April 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
30 Sep2019
Manchester South
Concerns raised1
1. Failure to put in place a reasonable adjustments care plan
This report raised 7 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.

No linked response statements
No respondent-stated action or position is linked to these concerns in the published data.
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
Failure to put in place a reasonable adjustments care plan
Wider context from the report
“2. On each of her admissions her parents took her needs passport in with her. The inquest was told that this should be used to develop the reasonable adjustments care plan and be accessible to all staff caring for her. On her first admission there was no reasonable care plan put in place despite the fact that she had clear and significant disabilities that would have benefited from an effective plan and her passport was available. Her passport location was not known by all staff caring for her; ”
Source location
Julie Ann Barrow · Prevention of Future Deaths report
Page 2 · concerns
Open source report
2 Feb2016
South Yorkshire (Eastern)
Concerns raised1
1. Lack of guidance for communicating with children with disabilities such as autism
This report raised 11 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
  Review the Paediatric IPOC and require documentation of communication needs and disability-related communication limitations.
  Stated by Doncaster and Bassetlaw Teaching Hospitals NHS Foundation TrustStated completed
AI-generated summary

Marc Jason Stephen Poole · 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

Marc Jason Stephen Poole, aged 6, was admitted to hospital on 16 May 2015 with suspected infection and died in Sheffield Children’s Hospital on 18 May 2015 from the effects of pneumococcal septicaemia. The report identified concerns about delayed antibiotic treatment, poor communication, inaccurate observation and warning-score recording, inadequate paediatric sepsis guidance, dissemination of medical information, and poor record keeping.

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 guidance for communicating with children with disabilities such as autism
Wider context from the report
“(1) Poor communication on a number of levels Insufficient discussion with the parents regarding history, insufficient weight attached to the information they did provide at the time of admission and subsequently. Absence of any protocols of guidance as to how best to communicate with children with disabilities such as autism as MJ had. Communications between staff were poor, HCAs to nurses, nurses to doctors and between junior doctors and senior doctors. Ineffective communication of microbiology results which had been phoned through to the ward but not immediately passed on to those who needed to undertake assessment. ”
Source location
Marc Jason Stephen Poole · 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
Review the Paediatric IPOC and require documentation of communication needs and disability-related communication limitations.

Verbatim wording from the response
“With respect to the discussion with the parents regarding a child’s clinical history, in order to ensure better communication the team have reviewed the Paediatric IPOC. Staff have been made aware of the need to listen to parents and take their views into consideration when assessing the clinical picture in any child who is admitted. Should children suffer from disabilities, medical and nursing staff will record, under the respective part of the Paediatric IPOC, how such children are communicated with and whether their disability limits their ability to communicate with strangers and hence the need to have more detailed and in depth conversations with parents. This situation will continue to pertain throughout the child’s stay in hospital.”

Source location
Marc-Poole-Response
Page 2 · response
Published 2 February 2016
Open published response

Data last updated 7 September 2026

What this concern includes

Not included

Reports over time

Concerns raised1

Lack of communication adjustments and plans for autistic patients with learning difficulties

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 make adjustments or adaptations to communications and therapy for a patient with autism and learning difficulties

Concerns raised1

Failure to make appropriate adjustments for patients with learning disabilities and autism

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.9

Concerns raised1

Lack of required adjustments for patients with learning disabilities and autism

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.4

Concerns raised1

Failure to make reasonable adjustments for communication and impaired respiratory function when making clinical decisions

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.5

Concerns raised2

Unavailability of communication interpretation and advocacy support for callers with learning disabilities

Lack of a procedure or specific protocol for callers with learning disabilities

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

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

Actions described in response 2

Actions described in response 9

Actions described in response 4

Actions described in response 5

Actions described in response 1

Respondent positions 1