Recurring concern

Inadequate recognition and specialist support for ARFID

First to latest report 7 May 2021 — 7 Jan 2026

Reports that mention this concern: 3
Times this concern has been raised: 5
Stated actions linked to this concern: 18

What this concern includes

Includes failures of controls specifically dedicated to recognising and supporting people affected by ARFID, including professional awareness, clinical approach, referral to appropriately experienced dieticians or other specialists, and availability or coordination of required long-term specialist support.

What is not included

Excludes generic autism, eating-disorder, feeding, mental-health or social-care deficiencies unless they are explicitly tied to recognising or supporting ARFID.
Excludes generic professional training, communication or referral failures that do not concern the ARFID pathway.
Excludes failures in treatment or support for other conditions where ARFID is not materially part of the reported unsafe condition.
Excludes neutral descriptions of ARFID prevalence or service activity without an identified recognition or specialist-support deficiency.

Trends

Reports over time

Reports mentioning this concern, 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 for Education1

Department of Health and Social Care1

Health Centre1

National Institute for Health and Care Excellence1

NHS England1

NHS Greater Manchester Integrated Care Board1

NHS Nottingham and Nottinghamshire Integrated Care Board1

Walsall Borough Council1

Walsall Healthcare NHS Trust1

Reports and published responses 3 reports

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

7 Jan2026
Black Country
Concerns raised1
1. Failure to provide onward referral to dieticians experienced in autism and ARFID
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Linked response

NHS England
Stated actions 1
1. NHS England
  Publish guidance for commissioners and providers on children’s eating disorder services, including ARFID care and reasonable adaptations for additional needs.
AI-generated summary

Joshua Lee Allcock · 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

Joshua Lee Allcock, a five-year-old boy with complex medical needs and a limited diet, developed severe dehydration after entering foster care and died on 3 January 2023 despite hospital treatment. Concerns included the lack of a formal autism diagnosis and related dietary support, variation in autism assessment practice, and the potential for the capillary refill time test to provide misleading reassurance when assessing dehydration in children with similar circumstances.

Read the report on judiciary.uk
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation
Failure to provide onward referral to dieticians experienced in autism and ARFID
Wider context from the report
“3. Regrettably, without a formal diagnosis of autism being made, there was no onward referral to dieticians with experience of autism and therefore an understanding of the link between autism and Avoidant restrictive food intake disorder (ARFID). ”
Source location
Joshua Lee Allcock · 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
Publish guidance for commissioners and providers on children’s eating disorder services, including ARFID care and reasonable adaptations for additional needs.

Verbatim wording from the response
“In January 2026, NHS England published guidance for commissioners and providers on eating disorder services for Children and Young People (CYP) including those with ARFID.”

Source location
2026-0012 - Response from NHS England
Page 2 · response
Published 20 January 2026
Open published response
14 Feb2024
Manchester South
Concerns raised2
1. Failure to establish effective cross-sector strategies for identifying and managing ARFID
2. Lack of professional awareness of ARFID and how to approach it
This report raised 6 other concerns. They are not shown here because they do not form part of this recurring concern.
Linked responses

Department for Education
Department of Health and Social Care
National Institute for Health and Care Excellence
NHS Greater Manchester Integrated Care Board
Stated actions 9
1. Department for Education and Department of Health and Social Care
  Refresh children’s and young people’s eating-disorder guidance to strengthen ARFID identification, intervention, tailored care and cross-service integration.
2. National Institute for Health and Care Excellence
  Refer the report to NICE’s surveillance team for consideration of ARFID inclusion in future eating-disorders guideline surveillance.
3. NHS Greater Manchester Integrated Care Board
  Deliver ARFID awareness and training sessions to health, education, social care and school nursing staff.
1. NHS Greater Manchester Integrated Care Board
  Map current ARFID-related provision across Health, Education and Social Care.
2. NHS Greater Manchester Integrated Care Board
  Roll out a restricted-eating dietetic referral pathway with parental support tools, professional training and screening through food diaries.
3. NHS Greater Manchester Integrated Care Board
  Develop and make a seven-minute ARFID briefing available across all Partnership agencies.
4. NHS Greater Manchester Integrated Care Board
  Complete a dedicated ARFID away day for Stockport school nurses to develop nutritional assessment skills and introduce the new dietetic pathway.
5. NHS Greater Manchester Integrated Care Board
  Make Royal College of Child Psychiatrists ARFID guidance available to all Stockport paediatricians.
6. NHS Greater Manchester Integrated Care Board
  Share learning from Alfie’s death across NHS Greater Manchester professional networks and relevant services.
Respondent positions 1
1. National Institute for Health and Care Excellence
  Insufficient evidence means NICE cannot yet develop reliable, valuable guidance on ARFID and medical emergencies in eating disorders.
  Unable to act
AI-generated summary

Alfie Anthony Kevin Nicholls · 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

Alfie Anthony Kevin Nicholls, a child with autism and a severely restricted diet, collapsed at home on 17 December 2021 and died at Stepping Hill Hospital despite attempts to resuscitate him. A post-mortem examination found significant malnutrition, and the report identified concerns about poor communication between professionals and the family, limited recognition and understanding of ARFID and medical risk, and insufficient coordinated support and resources.

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 establish effective cross-sector strategies for identifying and managing ARFID
Wider context from the report
“2. Evidence before the Inquest was that in addition to there being increased awareness amongst professionals there needed to be strategies within and across Health, Education and Social care to ensure effective strategies were put in place and those with ARFID or at risk of developing ARFID were identified and managed effectively. ”
Source location
Alfie Anthony Kevin Nicholls · Prevention of Future Deaths report
Page 2 · concerns
Open source report
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation
Lack of professional awareness of ARFID and how to approach it
Wider context from the report
“1. The inquest heard evidence that Avoidant Restrictive Food Intake Disorder (ARFID) was not widely understood by those involved with children and adults who may be impacted by it. That included a lack of awareness of what it was and how to approach it amongst Health, Education and Social Work professionals. The inquest was told that until awareness of it improved then similar situations to that of Alfie could go unrecognised with similar consequences. ”
Source location
Alfie Anthony Kevin Nicholls · 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
Refresh children’s and young people’s eating-disorder guidance to strengthen ARFID identification, intervention, tailored care and cross-service integration.

Verbatim wording from the response
“I agree that ARFID is an under-recognised condition which is why NHS England is refreshing guidance on children and young people's eating disorders, to increase the focus on ARFID as well as early identification and intervention. Updated guidance will highlight the importance of improved integration between dedicated community eating disorder services, wider children and young people's mental health and neurodevelopmental services, schools, colleges and”

Source location
Response from Department of Health and Social Care
Page 1 · response
Published 22 February 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
Refer the report to NICE’s surveillance team for consideration of ARFID inclusion in future eating-disorders guideline surveillance.

Verbatim wording from the response
“We will refer this report to our surveillance team so that the inclusion of ARFID can be considered when our eating disorders guideline is next reviewed, or when the literature on ARFID has matured sufficiently to allow the development of reliable, evidence-based guidance. The NICE guideline surveillance team monitors and reviews new evidence to determine whether guidelines should be updated. An exceptional surveillance review is undertaken when we are alerted to new, significant evidence relevant to the topic.”

Source location
Response from National Institute for Health and Care Excellence
Page 2 · response
Published 22 February 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
Deliver ARFID awareness and training sessions to health, education, social care and school nursing staff.

Verbatim wording from the response
“A variety of training sessions have been delivered in Stockport during 2023 which includes:”

Source location
Response from Greater Manchester Integrated Care
Page 1 · response
Published 22 February 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
Map current ARFID-related provision across Health, Education and Social Care.

Verbatim wording from the response
“Evidence before the Inquest was that in addition to there being increased awareness amongst professionals there needed to be strategies within and across Health, Education and Social care to ensure effective strategies were put in place and those with ARFID or at risk of developing ARFID were identified and managed effectively.”

Source location
Response from Greater Manchester Integrated Care
Page 2 · response
Published 22 February 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
Roll out a restricted-eating dietetic referral pathway with parental support tools, professional training and screening through food diaries.

Verbatim wording from the response
“• A new dietetic referral pathway for restricted eating which includes a tool to support parents who are concerned. Training of School Nurses and Health Visitors has commenced and will be a rolling program throughout the year to screen when parents raise concerns with 3-day food diaries as part of that pathway.”

Source location
Response from Greater Manchester Integrated Care
Page 2 · response
Published 22 February 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 and make a seven-minute ARFID briefing available across all Partnership agencies.

Verbatim wording from the response
“(5) The SSCP Learning Event Action Plan includes the development of a 7-minute briefing that will be easily available across the Partnership to all agencies.”

Source location
Response from Greater Manchester Integrated Care
Page 1 · response
Published 22 February 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
Complete a dedicated ARFID away day for Stockport school nurses to develop nutritional assessment skills and introduce the new dietetic pathway.

Verbatim wording from the response
“Stockport School nurses are having an away day this week solely dedicated to ARFID which will support their skills in nutritional assessment and introduce them to the new dietetic pathway.”

Source location
Response from Greater Manchester Integrated Care
Page 3 · response
Published 22 February 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
Make Royal College of Child Psychiatrists ARFID guidance available to all Stockport paediatricians.

Verbatim wording from the response
“An action from the SSCP Learning Event was that all Stockport paediatricians be made aware of the recent Royal College of Child Psychiatrists published guidance in relation to ARFID which was completed in February 2024.”

Source location
Response from Greater Manchester Integrated Care
Page 4 · response
Published 22 February 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
Share learning from Alfie’s death across NHS Greater Manchester professional networks and relevant services.

Verbatim wording from the response
“As a system we are committed to learning from the sad death of Alfie and I can confirm that information / learning has been shared across NHS Greater Manchester ICB via the following:-”

Source location
Response from Greater Manchester Integrated Care
Page 4 · response
Published 22 February 2024
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
Insufficient evidence means NICE cannot yet develop reliable, valuable guidance on ARFID and medical emergencies in eating disorders.

Verbatim wording from the response
“Our conclusion is that NICE is not best placed to develop guidance in this area. ARFID was explicitly excluded from the scope of our eating disorders guideline NG69 for the reason that it is a relatively new diagnostic category and one for which there is as yet little in the way of evidence on which to make recommendations. A recent literature review of the subject from University College London and the Maudsley Centre for Child and Adolescent Eating Disorders concluded that whilst ARFID is a common and impactful problem among young people with autism, it is currently under-researched.”

Source location
Response from National Institute for Health and Care Excellence
Page 1 · response
Published 22 February 2024
Open published response
7 May2021
Nottinghamshire
Concerns raised2
1. Failure of existing service eligibility pathways to provide support for ASD-related diet concerns
2. Lack of commissioned specialist long-term dietetic support for ASD patients with ARFID symptoms
Linked response

NHS Nottingham and Nottinghamshire Integrated Care Board
Stated actions 8
1. NHS Nottingham and Nottinghamshire Integrated Care Board
  Review clinical cases to identify current ARFID provision and service gaps.
2. NHS Nottingham and Nottinghamshire Integrated Care Board
  Review current ARFID service provision.
3. NHS Nottingham and Nottinghamshire Integrated Care Board
  Develop a preferred all-ages ARFID pathway with service-delivery recommendations.
1. NHS Nottingham and Nottinghamshire Integrated Care Board
  Obtain approval for the preferred ARFID pathway and required resources.
2. NHS Nottingham and Nottinghamshire Integrated Care Board
  Implement the agreed all-ages ARFID pathway.
3. NHS Nottingham and Nottinghamshire Integrated Care Board
  Explore development of expanded ARFID-related roles within primary care.
4. NHS Nottingham and Nottinghamshire Integrated Care Board
  Undertake a skills audit and training-needs analysis across specialist and non-specialist services.
5. NHS Nottingham and Nottinghamshire Integrated Care Board
  Explore workforce competencies around ARFID with Health Education England.
AI-generated summary

Owen Joseph HINDS · 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

Owen Joseph Hinds, a young man with autism and a restricted diet, died from an overwhelming chest infection on 28 February 2020. The report states that chronic liver disease and heart failure probably contributed to his death and that these conditions were not detected during his life. The principal concern was the absence of a specialist service providing long-term dietetic support for autistic people with ARFID symptoms, leaving Owen unable to access the sustained support required.

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 existing service eligibility pathways to provide support for ASD-related diet concerns
Wider context from the report
“1. There is no specialist service commissioned to provide ASD patients with long term dietetic support for ARFID symptoms, despite the increasingly prevalence of ARFID diagnosis. At the time of the inquest, I was informed that Owen did not meet the criteria for support from any of the Dietetic services. The Nottingham City Autism Service (NCAS) went above and beyond their remit in co-ordinating support from his GP. The service is commissioned to provide diagnostic and short term post-diagnostic intervention, yet they worked with Owen (as they do with many other patients) for years in order to bridge the gap in service provision. However, they could not provide the sustained ARFID support that Owen required. Owen did not meet the criteria for support from the Eating Disorder Service or Dietetic Services (on account of his diet concerns being linked to his ASD) or Primary Care Learning Disability Nurse (as Owen did not have an intellectual impairment). ”
Source location
Owen Joseph HINDS · Prevention of Future Deaths report
Page 2 · concerns
Open source report
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation
Lack of commissioned specialist long-term dietetic support for ASD patients with ARFID symptoms
Wider context from the report
“1. There is no specialist service commissioned to provide ASD patients with long term dietetic support for ARFID symptoms, despite the increasingly prevalence of ARFID diagnosis. At the time of the inquest, I was informed that Owen did not meet the criteria for support from any of the Dietetic services. The Nottingham City Autism Service (NCAS) went above and beyond their remit in co-ordinating support from his GP. The service is commissioned to provide diagnostic and short term post-diagnostic intervention, yet they worked with Owen (as they do with many other patients) for years in order to bridge the gap in service provision. However, they could not provide the sustained ARFID support that Owen required. Owen did not meet the criteria for support from the Eating Disorder Service or Dietetic Services (on account of his diet concerns being linked to his ASD) or Primary Care Learning Disability Nurse (as Owen did not have an intellectual impairment). ”
Source location
Owen Joseph HINDS · 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 clinical cases to identify current ARFID provision and service gaps.

Verbatim wording from the response
“Develop All Ages ARFID Pathway”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 2 · response
Published 22 November 2021
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 current ARFID service provision.

Verbatim wording from the response
“Develop All Ages ARFID Pathway”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 2 · response
Published 22 November 2021
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 preferred all-ages ARFID pathway with service-delivery recommendations.

Verbatim wording from the response
“As a system we have developed an overarching action plan which describes our intention to develop an all-age pathway for individuals who are affected by ARFID. This pathway will ensure we are able to meet the needs of ARFID patients who are neurotypical and those who are autistic or who have other comorbidities.”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 1 · response
Published 22 November 2021
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 approval for the preferred ARFID pathway and required resources.

Verbatim wording from the response
“Develop preferred pathway with recommendations for service delivery | Jun ’22 | All Ages ARFID Task and Finish Group”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 2 · response
Published 22 November 2021
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 the agreed all-ages ARFID pathway.

Verbatim wording from the response
“As a system we have developed an overarching action plan which describes our intention to develop an all-age pathway for individuals who are affected by ARFID. This pathway will ensure we are able to meet the needs of ARFID patients who are neurotypical and those who are autistic or who have other comorbidities.”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 1 · response
Published 22 November 2021
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
Explore development of expanded ARFID-related roles within primary care.

Verbatim wording from the response
“Develop workforce capability across the All Ages ARFID pathway and relevant support services”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 2 · response
Published 22 November 2021
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 a skills audit and training-needs analysis across specialist and non-specialist services.

Verbatim wording from the response
“Develop workforce capability across the All Ages ARFID pathway and relevant support services”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 2 · response
Published 22 November 2021
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
Explore workforce competencies around ARFID with Health Education England.

Verbatim wording from the response
“Develop workforce capability across the All Ages ARFID pathway and relevant support services”

Source location
2021-0391-Response-from-Nottingham-and-Nottinghamshire-CCG_Published
Page 2 · response
Published 22 November 2021
Open published response

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

Data last updated 7 September 2026

What this concern includes

Trends

Reports mentioning this concern, over time

Concerns raised1

Failure to provide onward referral to dieticians experienced in autism and ARFID

Linked response

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

Concerns raised2

Failure to establish effective cross-sector strategies for identifying and managing ARFID

Lack of professional awareness of ARFID and how to approach it

Linked responses

Stated actions An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.9

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

Concerns raised2

Failure of existing service eligibility pathways to provide support for ASD-related diet concerns

Lack of commissioned specialist long-term dietetic support for ASD patients with ARFID symptoms

Linked response

Stated actions An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.8

Stated actions 1

Stated actions 9

Respondent positions 1

Stated actions 8