Alfie Nicholls

REGULATION 28:  REPORT TO PREVENT FUTURE DEATHS 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

THIS REPORT IS BEING SENT TO:   

1) Department of Health and Social Care
2) Department of Education
3) The National Institute for Health and Care Excellence (NICE)
4) Greater Manchester Integrated Care

1  CORONER 

I am Alison Mutch, HM Senior Coroner, for the coroner area of South 
Manchester  

2  CORONER’S LEGAL POWERS 

I make this report under paragraph 7, Schedule 5, of the Coroners and 
Justice Act 2009 and regulations 28 and 29 of the Coroners 
(Investigations) Regulations 2013 

3 

INVESTIGATION and INQUEST 

On 20th December 2021, I commenced an investigation into the death of 
Alfie Anthony Kevin Nicholls. The investigation concluded on the 12th
January 2024 and the conclusion was one of Narrative: Died suddenly 
where his death was contributed to by malnutrition which was 
caused by a severely restricted diet and where the level of 
malnutrition and the consequential risk it posed was not recognised 
by professionals until after his death.  

The medical cause of death was 1a) Sudden death in child with 
features of malnutrition on a background of developmental delay 
and an autistic spectrum disorder 

4  CIRCUMSTANCES OF THE DEATH 

Alfie Anthony Kevin Nicholls was a child with autism who was in full time 
education at a special school and was under the care of the child 
development unit. He was also known to children’s services, and there 
was an allocated social worker to support him and his family. As a 
consequence of his autism and sensory issues, Alfie had a difficult 

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 relationship with food and a restricted diet from a young age. Following 
him starting school, his diet became increasingly more restricted. Health, 
Education and Social Services professionals involved in his care did not 
communicate effectively between themselves or with his family about his 
diet and so did not have a clear understanding of how severely restricted 
his diet had become and how extremely limited it was in nutritional value. 
The risk that his nutritionally poor diet could present to his physical health 
was not understood or recognised by professionals involved in his care.  

On 17th December 2021, he collapsed at his home address and was 
taken to Stepping Hill Hospital. Attempts to resuscitate him were 
unsuccessful and he died at Stepping Hill Hospital on 17th December 
2021. A post-mortem examination found evidence of significant 
malnutrition caused, on the balance of probabilities, by his severely 
restricted diet, that on the balance of probabilities, contributed to his 
collapse and death on 17th December 2021  

5  CORONER’S CONCERNS 

During the course of the Inquest the evidence revealed matters giving 
rise to concern. In my opinion there is a risk that future deaths will occur 
unless action is taken. In the circumstances it is my statutory duty to 
report to you. 

The MATTERS OF CONCERN are as follows.  –  

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. 

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. 

3.  A feature of the evidence before the Inquest was a normalisation 

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 of poor and restricted eating by children with autism. This meant 
that the impact on their overall health and wellbeing was not 
considered. Children with autism were measured against each 
other in relation to their eating with phrases such as “we have 
children with poorer diets …” being used. 

4.  Whilst there was an Education, Health and Care Plan (EHCP) in 
place for Alfie there was little evidence that EHCPs were being 
used as a holistic tool to understand the inter relationship between 
health and education. There was evidence that those writing 
EHCPs needed to consider a child more holistically for the EHCP 
to cover all the aspects that it was meant to cover and not just to 
focus on education. 

5.  The Inquest heard that the school nurse service could play a vital 

role in identifying health issues and supporting other professionals. 
This key role was significantly impacted by the high demand on the 
service and the very high caseloads school nurses working with 
complex children were being asked to carry nationally. 

6.  The role of a dietician in supporting children with eating disorders 
could be fundamental in maximising the nutritional value of what 
they consumed. Demands on the service and a limited 
understanding of how they could work to support children with 
disorders such as ARFID (nationally) meant that there was rarely 
regular input from dieticians. 

7.  ARFID, the Inquest was told, could lead to medical emergencies in 
eating disorders (MEED). The evidence given at the Inquest was 
that whilst this concept had been the subject of guidance amongst 
Psychiatrists it had been less publicised and there had been far 
less guidance by other Royal Colleges. In particular the Inquest 
was told that MEED needed to be far better understood by medical 
professionals in acute settings such as Emergency Departments 
and Paediatrics to avoid a situation where the impact of ARFID 
and the medical risk it posed was not understood until it was too 
late. 

6  ACTION SHOULD BE TAKEN 

In my opinion action should be taken to prevent future deaths and I 
believe you have the power to take such action.  

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 7  YOUR RESPONSE 

You are under a duty to respond to this report within 56 days of the date 
of this report, namely by 10th April 2024. I, the coroner, may extend the 
period. 

Your response must contain details of action taken or proposed to be 
taken, setting out the timetable for action. Otherwise, you must explain 
why no action is proposed. 

8  COPIES and PUBLICATION 

I have sent a copy of my report to the Chief Coroner and to the following 
Interested Persons namely 1) 
3) Stockport NHS Foundation Trust; 4) Lisburne School; 5) Stockport 
Metropolitan Borough Council, who may find it useful or of interest. 

; 2) 

; 

I am also under a duty to send the Chief Coroner a copy of your 
response.  

The Chief Coroner may publish either or both in a complete or redacted 
or summary form. He may send a copy of this report to any person who 
he believes may find it useful or of interest. You may make 
representations to me, the coroner, at the time of your response, about 
the release or the publication of your response by the Chief Coroner. 

9  Alison Mutch 

HM Senior Coroner 

14.02.2024  

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Stockport Integrated Care Partnership  
4th Floor, Stopford House 
Piccadilly 
Stockport 
SK1 3XE 

Date:  4 April 2024 

Private & Confidential 
Ms Alison Mutch 
H M Senior Coroner 
1 Mount Tabor Street 
Stockport 
SK1 3XE 

Dear Ms Mutch 

Inquest into the death of Alfie Anthony Kevin Nicholls – Date of Death 17th  December 2021 

I refer to the Regulation 28 Prevention of Future Deaths Report issued following the inquest into the 
death of the above named.  I am sorry to learn of the circumstances of Alfie’s death and offer my 
sincere condolences to his family. 

To support the response to the following matters of concern I will refer to the multi-agency learning 
event  that  was  completed  by  Stockport  Safeguarding  Childrens  Partnership  [SSCP]  in  July  2023 
following  Alfie’s  death.  The  action  plan  from  the  Learning  Event  is  having  oversight  via  the 
Partnerships Learning from Practice Hub model. 

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. 

A variety of training sessions have been delivered in Stockport during 2023 which includes: 

(1)  Pennine Care NHS Foundation Trust Community Eating Disorders Service [CEDS] ARFID is 

Everybody’s Business Network Event November 2023 with a plan to repeat in Spring 2024. 

(2)  Stockport  NHS  Foundation  Trust  Children  and  Young  People’s  Mental  Health  Education 
Practitioner includes ARFID in the training delivered to staff and it has been included as part 
of the Level 3 Safeguarding Children training offer. 

(3)  Stockport Dietetic Service have completed the Maudsley ARFID training in 2023. 

(4)  Spring  North  ARFID  Training  Sessions  have  been  shared  across  the  locality  and  several 
Stockport practitioners across health and social care have completed the training and there is 
currently a waiting list. 

(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. 

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 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. 

Following the SSCP Learning Event there will be a process mapping of current provision planned for 
May 2024 as there have been several developments since Alfie sadly died to support professionals 
across Health, Education and Social care to ensure effective strategies are in place to ensure those 
with ARFID or at risk of developing ARFID were identified and managed effectively. 

Recent developments include: 

•  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. 

•  Revised medical guidance for paediatricians has been put in place regarding nutritional screening 

& medical management. 

A feature of the evidence before the Inquest was a normaliisation of poor and restricted eating 
by children with autism. This meant that the impact on their overall health and wellbeing was 
not  considered.  Children  with  autism were measured  against each other  in relation to  their 
eating with phrases such as “we have children with poorer diets …” being used. 

Following  Alfie’s  death,  Stockport  NHS  Foundation  Trust  has  undertaken  a  review  of  all  children 
known to paediatricians to ensure all had a referral to dietetics, appropriate blood tests and access to 
food supplements. 

Recent evidence that there has been a ‘mind shift’ in the normalisation and medical management of 
children with autism with restricted eating has been demonstrated by 3 children having percutaneous 
endoscopic gastrostomy [PEG] to enhance their nutritional intake. 

Pediatricians and the CEDS continue to link through the monthly multi-disciplinary meetings where 
they  can  discuss  children,  they  are  worried  about,  and  refer  to  the  CEDS  ARFID  pathway  if 
appropriate. Although the CEDS ARFID pathway is for children over the age of 8 at the MDT there is 
the opportunity to discuss children under the age of 8 and CEDS advise on the management. 

There  are  also  plans  in  place  to  introduce  a  nutritional  element  to  assessments  and  plans  within 
Stockport neurodiversity pathways. 

Whilst there was an Education, Health and Care Plan (EHCP) in place for Alfie there was little 
evidence that EHCPs were being used as a holistic tool to understand the inter relationship 
between  health  and  education.  There  was  evidence  that  those  writing  EHCPs  needed  to 
consider a child more holistically for the EHCP to cover all the aspects that it was meant to 
cover and not just to focus on education. 

Stockport Designated Clinical Officer [DCO] SEND has been leading on assurance work to improve 
the quality of EHCP particularly looking at the health information which is included within them. 

There are now 2 health links with the Local Authority EHCP team who are supporting the development 
of a EHCP multi-agency audit process.  The DCO also meets with the health links monthly. 

The DCO is also leading work to ensure the use of the EHCP ‘flag’ within EMIS, the record keeping 
system for health visitors and school nursing. 

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 The  SSCP  Learning Event  Action  Plan requests assurance from the EHCP  Team that  a review is 
undertaken of children with restrictive eating or ARFID and that health information is included. 

Schools are responsible for leading the EHCP annual review, so will lead on seeking updating advice 
and  ensuring  this  element  of  the  plan  is  reviewed  in  the meeting.  If  as an  outcome  of  the  EHCP 
annual review the plan needs to be amended, they the school will provide all the information gathered 
to the EHCP caseworker to update the plan document. 

At  the  SSCP  Learning  from  Practice  Hub  it  was  noted  that  staff  at  Alfie’s  school  are  now  adding 
information in relation to restricted eating into the health section of the EHCP plan. 

Work has also commenced to update the Stockport ‘Medical Needs in School Policy’ for children who 
may have restricted eating but do not have an EHCP in place. 

The Inquest heard that the school nurse service could play a vital role in identifying health 
issues  and  supporting other  professionals. This  key  role  was significantly  impacted  by the 
high demand on the service and the very high caseloads school nurses working with complex 
children were being asked to carry nationally. 

In  Stockport  the  0-19  yr  service  is  commissioned  by  Public  Health.  Stockport  reflects  the  national 
picture  of  very  high  caseloads  for  school  nurses  working  with  complex  children.  In  2022  a  school 
nursing  transformation  was  undertaken  which  included  an  increase  to  provision  resulting  in  an 
identified school nurse covering Alfie’s school plus 3 other schools. 

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.  

There  is  a  GM  workstream  regarding  special  schools  and  nursing  requirements  exploring  a  GM 
response. 

The role of a dietician in supporting children with eating disorders could be fundamental in 
maximising the nutritional value of what they consumed. Demands on the service and a limited 
understanding  of  how  they  could  work  to  support  children  with  disorders  such  as  ARFID 
(nationally) meant that there was rarely regular input from dieticians. 

As  previously  mentioned  there  has  been  the  development  of  a  new  dietetic  referral  pathway  for 
restricted eating which includes a tool to support parents who are concerned. The aim is to have a 
consistent approach to ensuring children are nourished if they do not have a varied diet. It clarifies 
who can refer to the dietetic service including health professionals, school nurses and GPs. 

The  referral  pathway  is  currently  being  rolled  out  to  GPs,  Local  Authority  Children  Services, 
community health services and schools.  It was shared with Alfie’s school prior to roll out to ensure 
this would support them to work with families and they have reported it has been effective as they 
have been able to sign post parents to the appropriate place to support a referral. 

All  children  who  are  referred  to  Pediatricians  with  restricted  eating  are  routinely  referred  into 
Dieticians. 

ARFID, the Inquest was told, could lead to medical emergencies in eating disorders (MEED). 
The  evidence  given  at  the  Inquest  was  that  whilst  this  concept  had  been  the  subject  of 
guidance  amongst  Psychiatrists  it  had  been  less  publicised  and  there  had  been  far  less 
guidance by other Royal Colleges. In particular the Inquest was told that MEED needed to be 
far  better  understood  by  medical  professionals  in  acute  settings  such  as  Emergency 
Departments and Paediatrics to avoid a situation where the impact of ARFID and the medical 
risk it posed was not understood until it was too late. 

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

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:-

•  DCO SEND GM Professional Network 

•  Pennine Care NHS Foundation Trust provided CEDS across Greater Manchester. 

•  CEDS are awaiting the publication of National CEDS Commissioning Standards expected in 

Spring 2024 which will develop a GM plan for restricted eating. 

•  Stockport  NHS  Foundation  Trust  Pediatricians  have  shared  the  learning  across  their 

professional Greater Manchester network. 

I hope the above assures you and Alfie’s family that lessons have been learnt following the inquest 
into Alfie’s death and that there is now a clear plan in place to ensure that healthcare professionals 
recognise ARFID and have access to appropriate care pathways to best support any child with this 
condition. 

If you require any additional information please let me know. 

Yours sincerely 

Chief Executive and Place Based Lead 
Stockport Metropolitan Borough Council/NHS Greater Manchester 

Interim Deputy Chief Executive Officer and Chief Nursing Officer 
NHS Greater Manchester 

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2nd Floor 
2 Redman Place 
London 
E20 1JQ 
United Kingdom 

05 April 2024 

Alison Mutch 
HM Senior Coroner 
The Coroners Court 
1 Mount Tabor Street 
Stockport 
SK1 3AG 

Dear Ms Mutch 

Re: Regulation 28 Prevention of Future Deaths Report (Michelle Louise
Whitehead) 

I write in response to your regulation 28 report dated 14 February 2024 regarding the 
very sad death of Alfie Anthony Kevin Nicholls. I would like to express my sincere 
condolences to Alfie’s family. 

The patient safety leads at NICE have discussed the report and understand that your 
request is that we develop guidance onavoidant/restrictive food intake disorder, and 
in particular in medical emergencies in eating disorders (MEED), as is mentioned in 
paragraph 7 of the matters of concern. 

We have concluded that the request is for such guidance to be directed to ‘medical 
professionals in acute settings such as Emergency Departments and Paediatrics’. 

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. The authors stated that work is required to identify the 
prevalence of ARFID in children and young people with autism; to uncover the key 
drivers of ARFID in this population; to adapt currently available interventions for use 
with children and young people with autism; and to rigorously test these interventions 

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 in clinical trials. Until this work is done, it is unlikely that NICE will be able to produce 
useful and usable guidance in this area. 

There are, however, a number of resources available to healthcare practitioners and 
families and carers of people with ARFID, including the work of the charities ‘Beat 
Eating Disorders UK’ (ARFID - Beat (beateatingdisorders.org.uk)) and ARFID 
awareness UK (ARFID Awareness UK). The NHS webpage on eating disorders links 
to the Beat website in its section on ARFID. A position paper has been written by 
members of the ARFID Special Interest Group (ARFID SIG), which is part of the 
British Dietetic Association (BDA). Locally, a number of NHS trusts have produced 
guidance for parents and health care professionals, such as this from Cambridge. In 
2021-22, the British Paediatric Surveillance Unit, part of the Royal College of 
Paediatrics and Child Health undertook a surveillance study in the UK and Republic 
of Ireland to establish incidence rates (number of new cases) of ARFID in children 
and young people presenting to secondary health care, and also to get information 
on ARFID, specifically on referral pathways, patterns of presentation, and clinical 
features (eating behaviours, medical complications and the types of medical or 
psychiatric presentations it is associated with). This study has not reported yet. A 
systematic review of the literature by the same authors published in 2023 concluded 
that ‘The current literature on the epidemiology of ARFID in children and adolescents 
is limited. Studies are heterogeneous with regard to setting and sample 
characteristics, with a wide range of prevalence estimates. Further studies, 
especially using surveillance methodology, will help to better understand the nature 
of this disorder and estimate clinical service needs. 

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. 

In the meantime, the view of NICE is that clinicians should follow the information 
provided by specialist groups such as the British Dietetic Association and the Royal 
College of Paediatrics and Child Health as well as the specific charities.  

I hope this information is helpful. 

Yours sincerely, 

Chief executive 

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