Rose Harfleet

Care Quality Commission 
Citygate 
Gallowgate 
Newcastle upon Tyne 
NE1 4PA 
Telephone: 03000 616161 
www.cqc.org.uk 

Dr Karen Henderson,  
HM Assistant Coroner for Surrey  
HM Coroner’s Court  
Station Approach  
Woking  
GU22 7AP 

Car 

23 June 2025  

Our reference: 

Dear Dr Karen Henderson,  

Re: Regulation 28 Report following the inquest into the death of Rose Annie 
Harfleet  

Thank you for raising the Regulation 28 report with us, following the inquest into the 
death of Rose Annie Harfleet on 30 January 2024 at Royal Surrey County Hospital part 
of the Royal Surrey NHS Foundation Trust. We would like to extend our sympathy and 
condolences to Rose’s family and friends. 

We will respond to each of your concerns in turn. 

The management of children with profound disabilities within a hospital setting. 

Your concerns relate specifically to the availability of national or local guidance. We are 
unable to comment directly on this point due to it being outside of the remit of our 
regulatory scope, and there are other respondents who would be best placed to 
respond directly to this question. 

We do however, acknowledge the lack of understanding of patient needs, and poorer 
treatment outcomes for patients with a learning disability, in the acute setting, is a 
known problem. There have been a few research studies undertaken. How to improve 
hospital care for children with learning disabilities specifically focuses on children and 
Who I am matters is CQC’s thematic review into the experiences of autistic patients and 
patients with a learning disability from 2022. 

With unwarranted variation in care and the poorer outcomes sometimes experienced by 
people with learning disabilities, autism or both it has been recognised trusts need to 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 sustainably improve many of their services. NHS England introduced  the Learning 
Disability Improvement Standards for Trusts an annual benchmarking exercise to 
measure trusts performance against  a set of standards. These standards provide a 
benchmark against which all trusts, be they universal or specialist healthcare providers, 
can measure their performance in delivering services to people with learning disabilities, 
autism or both, with an aim to drive quality improvement. 

Guidelines - consultation with parents and guardians of children with profound 
disabilities within a hospital setting 

Speaking with and respecting patients’ families is a key aspect of the mandatory 
learning disability and autism training (aka the Oliver McGowan training) so all clinicians 
involved should be aware of this. A difficulty with regard to the implementation and 
regulation of providing this training has been the delay to the publication of the Code of 
Practice. This will give providers and CQC staff clearer guidance on the requirements of 
the training and for CQC to regulate. Interim guidance is available on our website. 

Nursing and Medical care on the ward 

We last assessed the Children and Young Persons Assessment Service Group in June 
2024. This was a focused planned assessment which looked at 6 priority quality 
statements. Parents we spoke with spoke positively about the team approach taken by 
those caring for their children.  One parent spoke about an awareness of the needs of 
their individual child and how it had been particularly important there had been a 
multidisciplinary approach, drawing on different people’s expertise and knowledge as 
their child had multiple needs. The assessment only reflected a snapshot of time and 
from the information provided. It is not a reflection of the experiences of Rose and her 
mother. We acknowledge this and that this may have been very distressing for Rose’s 
family. 

Rose’s case is being reviewed in line with the Care Quality Commission’s Specific 
Incident Guidelines. These guidelines describe the process for the organisation to take 
criminal enforcement action against providers, where a single specific incident, resulted 
in avoidable harm or exposure to a significant risk of avoidable harm, the incident and 
resulting harm provides evidence of a serious breach of a prosecutable regulation by 
the provider and the breach was the responsibility of the provider. 

Role and Provision of the Learning Disability Nurse  

The nursing team had access to a dedicated paediatric learning disabilities nurse, 
although this was a time limited service, which resulted in them not being available 
during Rose’s admission. 

If you have any questions about this letter, you can contact our National Customer 
Service Centre using the details below: 

 
  
 
 
 
 
 
 
 
 
 
 
 
 
 Telephone:   03000 616161 

Email:  

 Enquiries <Enquiries@cqc.org.uk> 

Write to: 

CQC Operations South  
Citygate 
Gallowgate 
Newcastle upon Tyne 
NE1 4PA 

If you do get in touch, please make sure you quote or have the reference above reference 
number to hand. It may cause delay if you are not able to provide it to us. 

Yours sincerely, 

Deputy Director

From 

Minister of State for Care  

39 Victoria Street  
London  
SW1H 0EU 

Our ref: 

HM Assistant Coroner Dr Karen Henderson 
HM Coroner’s Court 
Station Approach 
Woking 
GU22 7AP 

By email: 

10 July 2025 

Dear Dr Henderson,  

Thank you for the Regulation 28 report of 13 May 2025 sent to the Secretary of State / the 
Department of Health and Social Care about the death of Rose Annie Harfleet. I am replying 
as the Minister with responsibility for disabilities and SEND at the Department of Health and 
Social Care.  

Firstly, I would like to say how saddened I was to read of the circumstances of Rose’s death 
and I offer my sincere condolences to her family and loved ones. The circumstances your 
report describes are very concerning and I am grateful to you for bringing these matters to 
my attention.  

The report raises the following concerns: 

• 

the management of children with profound  disabilities within a hospital setting and 
specifically the lack of relevant guidance; 

•  consultation with parents and guardians of children with profound disabilities within a 

hospital setting; 

•  nursing and medical staff recognition of the importance of listening to the voices of 
parents and guardians where a patient is unable to advocate for themselves; and 
the adverse impact on care when Learning Disability Liaison Nurses are not offered 
as a matter of course. 

• 

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

The management of children with profound disabilities within a hospital setting 

Increasing knowledge and awareness of staff 

  
 
 
 
 
 
 
 
  
 
 
 
 
 
  
  
  
 
 
 To  improve  awareness  of  learning disability  and  autism  within  the  health  and  social  care 
system, under the Health and Care Act 2022, from 1 July 2022 Care Quality Commission 
(CQC)  registered  providers  are  required  to  ensure  their  staff  receive  specific  training  on 
learning disability and autism appropriate to their role. This will help to ensure that staff have 
the right knowledge and skills to provide safe and informed care.  To support providers to 
meet  the  statutory  training  requirement,  we  have  been  rolling  out  the  Oliver  McGowan 
Mandatory Training on Learning Disability and Autism to the health and adult social care 
workforce: this specifically highlights the difference that listening to parents can make. 

We are aware of the specific challenges faced by those living with rare conditions such as 
Mosaic Trisomy 17. The UK Rare Diseases Framework was published in January 2021. 
One of its four priorities is increasing awareness among healthcare professionals. With 
over 7,000 rare diseases, it is not possible for healthcare professionals to receive 
comprehensive training on every condition. It is therefore important that they are aware of 
rare diseases more broadly and are alert to considering them. This includes providing 
training and resources to enable healthcare professionals to recognise rare diseases in 
patients and be aware of potential specialist treatment needs, as well as signposting to 
support and care pathways.  

In England, we have now published four action plans setting out how we will address the 
priorities of the UK Rare Diseases Framework. To ensure delivery and accountability, each 
action lists an owner, desired outcomes and how we will measure and report on progress. 
Further information on the 2025 England Rare Diseases Action Plan can be found at 
www.gov.uk/government/publications/england-rare-diseases-action-plan-2025 

Tailored care 

We expect public services to be adhering to existing responsibilities to provide reasonable 
adjustments and tailored care for people with specific needs. For example, under the 
Equality Act 2010, public sector organisations are required to make changes in their 
approach or provision to ensure that services are accessible to disabled people as well as 
to everybody else. In addition, each Integrated Care Board must have an executive lead 
for learning disability and autism who will support the board in: addressing health 
inequalities; supporting equal access to care across all health services; and improving 
overall health outcomes. 

There  is  work underway  in  NHS  England  to  make  sure  that  staff  in  health  settings  know 
when they need to make reasonable adjustments for people. This includes the development 
of a Reasonable Adjustment Digital Flag, which enables the recording of key information 
about  a  patient,  including  if  a  person  is  autistic  or  has  a  learning  disability,  and  their 
reasonable adjustment needs, to ensure support can be tailored appropriately.   

 
 
 
 
 
 
 
 
 
 
 
 In June 2024, NHS England published a Health and Care Passport guidance and template 
which aims to support personalised care for people with a learning disability and autistic 
people, including when they go into an acute hospital.  

Long-term ambitions 

The 10 Year Health Plan will set out how the NHS needs to change to ensure everyone 
has access to high-quality care and how we can enable health and social care services to 
work better together to provide joined-up care.  

As part of the Plan’s development, we have been engaging with members of the public 
and healthcare staff for the last six months to understand what is not working as well as it 
should and what the potential solutions are. We ran seven in-person deliberative events 
across the country with the public and we held a specific workshop with people with a 
learning disability and autistic people to ensure their views were captured. The rich 
insights we have gathered from these different events and surveys are now being 
analysed and are informing the Plan to help make the NHS fit for the future. 

The importance of patient voice and parent/guardian advocacy 

All NHS bodies and private and third sector providers supplying NHS services are required 
by  law  to  have  regard  to  the  NHS  Constitution  when  performing  their  health  service 
functions. The NHS Constitution sets out rights for patients, public and staff. It outlines NHS 
commitments to patients and staff, and the responsibilities that the public, patients and staff 
owe to one another to ensure that the NHS operates fairly and effectively.  

It also details that patients have the right to be involved in planning and making decisions 
about their health and care, where appropriate this right includes family and carers of those 
receiving treatment. Alongside this right, the NHS Constitution also sets out that the NHS 
pledges  to  work  in  partnership  with  those  receiving  treatment,  their  family,  carers  and 
representatives. 

As part of the government’s 10-year plan and transforming the NHS from analogue to digital, 
the government will create a more modern NHS by bringing together a single patient record, 
summarising patient health information, test results, and letters in one  place, through the 
NHS  App.  It  will  put  patients  and  their  advocates  in  control  of  their  own  medical  history, 
meaning  they  do  not  have  to  repeat  it  at  every  appointment,  and  that  staff  have  the  full 
picture of patients’ health.  

Another  important  initiative  to  empower  patient  voice  and  parent/guardian  advocacy  is 
Martha’s Rule. This gives patients and their families who are concerned about deterioration 
in their physiological condition the right to initiate a rapid review of their case, 24 hours a 
day, from someone outside of their immediate care team. When requested, this rapid review 
will inform whether any new or additional action needs to be taken to ensure patients receive 
the most appropriate care and treatment – which may include escalation. 

 
 
 
 
 
 
 
 
 
 
 I hope this response is helpful. Thank you for bringing these concerns to my attention.   

Yours sincerely, 

MINISTER OF STATE FOR CARE

Dr Karen Henderson 
HM Assistant Coroner for Surrey  
HM Coroner’s Court, Surrey  
Station Approach  
Woking  
GU22 7AP 

Co-National Medical Director  
NHS England  
Wellington House 
133-155 Waterloo Road  
London 
SE1 8UG 

7 July 2025  

Dear Dr Henderson, 

Re: Regulation 28 Report to Prevent Future Deaths – Rose Annie Harfleet who 
died on 30 January 2024.  

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 13 May 
2025 concerning the death of Rose Annie Harfleet on 30 January 2024. In advance of 
responding to the specific concerns raised in your Report, I would like to express my 
deep condolences to Rose’s family and loved ones. NHS England is keen to assure 
the family and yourself that the concerns raised about Rose’s care have been listened 
to and reflected upon.   

Your  Report  raises  concerns  around  the  management  of  children  with  profound 
disabilities within a hospital setting, and the lack of national or local guidance to assist 
staff in appropriately managing patients such as Rose, who may be reliant on others 
to advocate on their behalf. My response to the Coroner has been supported by NHS 
England’s national Children and Young People and Learning Disability Teams.  

From the standpoint of learning disability liaison nurses, there is currently no national 
accepted protocol for how and when liaison nurses should be engaged in someone’s 
care.  This  is  due  to  the  fact  that  different  hospitals  have  a  variety  of  processes  for 
enacting secondary referrals and, to a degree, they should be afforded this autonomy. 
However, when it is clearly specified and evident that a patient has a specific diagnosis 
and particular needs arising from their disability then, in accordance with the Trust’s 
duties  under  the  Equality  Act  2010,  they  should  endeavour  to  make  ‘reasonable 
adjustments’.  In  cases  such  as  Rose’s,  the  provision  of  learning  disability  liaison 
nurses  is  one  such  adjustment,  affording  patients  and  their  families  a  level  of 
assurance  that  their  care  will  be  ‘adjusted’  as  needed.  I  am  very  sorry  to  hear  that 
Rose and her mother were not introduced to a learning disability liaison nurse during 
her time in the Emergency Department. I note that your Report has also been sent to 
the Royal Surrey NHS Foundation Trust, and hope that they will be able to address 
this issue further in their own response.  

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

                                                                                                                       
 
 
 
 
 
 
 
 
  
 
 
 
 
 disability  liaison  nurses  are  not  being  consistently  notified  when  a  patient  with  a 
learning disability is admitted to hospital.  

Oliver  McGowan  Mandatory  Learning  Disability  and  Autism  Training  being  made 
mandatory will further equip all staff to better recognise the need to provide reasonable 
adjustments. The training is named after Oliver McGowan, whose death highlighted 
the need for health and social care staff to have better training for treating people with 
learning disabilities and autism. The Health and Care Act 2022 introduced a statutory 
requirement that all CQC-registered providers must ensure their staff receive learning 
disability  and  autism  training appropriate  to  their  role,  and  the  Oliver  McGowan 
Training is the preferred and recommended training for all health and social care staff. 
On 19 June 2025, the Department of Health and Social Care (DHSC) also launched 
the  Oliver  McGowan  Code  of  Practice,  setting  out  clear  standards  for  training  on 
learning disability and autism.  

In  June  2024,  NHS  England  published  a  Health  and  Care  Passport  guidance  and 
template which aims to support personalised care for people with a learning disability 
and autistic people, including when they go into an acute hospital. 

NHS England is also undertaking further work to make sure that staff in health settings 
know whether they need to make reasonable adjustments for people. This includes 
the  development  of  a  Reasonable  Adjustment  Digital  Flag,  which  enables  the 
recording of key information about a patient, including if a person is autistic or has a 
learning disability, and their reasonable adjustment needs, to ensure support can be 
tailored appropriately.     

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

I  would  also  like  to  provide  further  assurances  on  the  national  NHS  England  work 
taking  place around  the  Reports  to  Prevent Future  Deaths.  All  reports  received  are 
discussed  by  the  Regulation  28  Working  Group,  comprising  Regional  Medical 
Directors,  and  other  clinical  and  quality  colleagues  from  across  the  regions.  This 
ensures that key learnings and insights around events, such as the sad death of Rose, 
are shared across the NHS at both a national and regional level and helps us to pay 
close attention to any emerging trends that may require further review and action.   

Thank you for bringing these important patient safety issues to my attention and please 
do not hesitate to contact me should you need any further information.  

Yours sincerely,  

 
 
  
 
 
 
 Co-National Medical Director 
(Secondary Care)

Dr Karen Henderson 

HM Coroner's Court 
Station Approach 
Woking 
GU22 7AP 

23 May 2025 

Dear Dr Henderson, 

Further  to  your  Prevention  of  Future  Deaths  (PFD)  Notice  issued  on  13th  May  2025,  following  the 
conclusion of your inquest (3rd March 2025) into the death of Rose Annie Harfleet (aged 12 years) who 
died on 30th January 2024, we would like to extend our sympathy and condolences to Rose’s family 
and friends.   

Rose and her mother attended the emergency department (ED) of  Royal Surrey County Hospital, on 
the 29th January 2024, with symptoms of intestinal obstruction. From your PFD notice it appears the 
need  for  surgical  assessment  was  recognised  but  this  did  not  happen  before  or  after  transfer  to  a 
children’s ward. 

Regarding your specific concerns: 

1.  The management of children with profound disabilities within a hospital setting 

In  September  2024,  the  Royal  College  of  Emergency  Medicine  (RCEM)  published  a  Learning 
Disabilities Toolkit [1]. This resource includes information about how best to approach the management 
of people with a learning disability and suggestions on how to make reasonable adjustments in an ED 
setting. The toolkit also makes specific mention of intra-abdominal pathology and aspiration. The RCEM 
also provide additional online educational resources related to Learning Disabilities [2]. The RCEM feel 
it would not be appropriate to comment about the care delivered in the in-patient setting. 

2.  Guidelines  -  consultation  with  parents  and  guardians  of  children  with  profound 

disabilities within a hospital setting 

The RCEM Learning Disability Toolkit [1] emphasises the importance of listening to family and carers 
of people with a learning disability in the ED. The RCEM are represented in the group developing the 
ED  version  of  the  national  paediatric  early  warning  system  (nPEWS)  with  NHS  England.    A  key 
component of the nPEWS (and the current draft of the emergency department specific nPEWS score - 
EDnPEWS) is parental/carer concern [3]. The response from the parent/carer is built into the escalation 
response. The RCEM is also supportive of the work just commencing via NHS England’s Patient Safety 
Collaborative, which is looking to test the use of Martha’s Rule in the ED setting. We would also note 

 
 
 
 
 
 
 
 
 
 
 
 that not only does the RCEM Learning Disabilities Toolkit promote specific education and training for 
ED  staff  with  regards  learning  disabilities,  we  recognise  that  this  training  is  also  a  mandatory 
requirement for all healthcare staff [4] and is often delivered very successfully through the eLearning 
for Health platform [5] as the Oliver McGowan Mandatory Training on Learning Disability and Autism. 

3.  Nursing and Medical care on the ward 

The RCEM feel it would not be appropriate to comment about the care delivered in the in-patient setting. 

4.  The Role of the Learning Disability Nurse 

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

Thank you for bringing Rose’s tragic case to our attention. I hope that the above response gives some 

reassurance that the RCEM are working to highlight the health inequalities suffered by people with a 
learning disability and providing resources for EDs to improve the care they deliver. 

Yours sincerely,  

Chair, Quality in Emergency Care Committee 
Royal College of Emergency Medicine 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 References 

1. Learning_Disabilities_Toolkit_v2.pdf (Accessed 15.05.2025) 

2. https://www.rcemlearning.co.uk/?s=learning+disability (Accessed 15.05.2025) 

3. pews-observation-and-escalation-chart-5-12-years-updated.pdf (Accessed 15.05.2025) 

4.-https://www.cqc.org.uk/guidance-providers/training-staff-support-autistic-people-and-people-

learning-disability (Accessed 15.05.2025) 

5.-https://portal.e-lfh.org.uk/Catalogue/Index?HierarchyId=0_58299_58300&programmeId=58299 

(Accessed 15.05.2025)

HM Assistant Coroner for Surrey 
Station Approach, Woking, GU22 7AP 

08 July 2025 

Dear Dr Henderson,  

Re: RCPCH Response to the Inquest Touching the Death of Rose Annie Harfleet 
A Regulation 28 Report – Action to Prevent Future Deaths 

Thank you for sharing your report with us regarding the tragic and untimely passing of Rose 
Annie Harfleet. I was very sorry to hear of Rose’s death. 

We have considered your report carefully and respond below to the four concerns noted. 

1.  The management of children with profound disabilities within a hospital setting 

The RCPCH Facing the Future standards describe how paediatric care should be delivered 
to provide a safe and sustainable, high-quality service that meets the health needs of every 
child and young person. Our Facing the Future: Emergency Care Standards apply to all 
persons up until the age of 18. These standards aim to ensure that urgent and emergency 
care is fully integrated to ensure children are seen by the right people, at the right place and 
in the right setting. We are currently in the process of review, revision and update of our 
current standards, to be published in Autumn 2025.  

Our currently available Facing the Future: Emergency Care Standards (2018) contain a 
dedicated chapter on children with complex medical needs. Three of these standards have 
particular relevance: 

•  Standard 49: Triage systems must consider the additional requirements of prioritising 

care for children with complex medical needs.  

•  Standard 50: When treating a child with complex medical needs, the need to 

consider early escalation for senior review should be included in all training and 
induction.  

•  Standard 51: When treating a child with complex medical needs, staff should ask to 

see the child’s emergency care plan. 

The revised standards are due to be published in Autumn 2025 and will be shared with all 
relevant professionals working in emergency care settings. I will share your report with the 
Chair of our Intercollegiate Committee for Emergency Care who is leading this work for their 
information.   

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 2.  Guidelines - consultation with parents and guardians of children with profound 

disabilities within a hospital setting  

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

3.  Nursing and Medical care on the ward - the importance of listening and responding to 

Rose’s mothers ongoing concerns  

Our response to point 2 above recognises the responsibility of clinicians to listen and 
respond to patients and their families. All parents are experts in their own children, however 
this is often particularly the case in those children with complex needs. 

RCPCH are actively supporting the role out of Martha’s Rule. Martha’s Rule is a patient 
safety initiative currently being piloted in England which aims to empower all staff, patients 
and their families to seek an independent medical review if they feel their concerns about a 
patient’s care are not being adequately addressed. The rule is designed to give families the 
ability to directly request an expert review by a senior clinician not within the immediate care 
team, potentially identifying critical issues before they result in harm.   

By establishing this right to an independent review, Martha’s Rule improves ability to 
recognise and respond to deterioration by incorporating parents and families as part of the 
team. It formalises an escalation route for parents, carers and families to use to ensure their 
concerns are listened to and acted on and encourages transparency and collaboration. 

RCPCH contributed to the early working groups for Martha’s Rule, sharing our members 
expertise on the unique and complex paediatric environment, in particular highlighting the 
challenges associated with paediatric ICU availability, the need for workforce training and 
capacity building in order to implement this important patient safety initiative. We continue to 
engage with NHS England as data from the pilot sites emerge 

In addition, RCPCH are committed to the introduction, embedding and appropriate 
standardisation of Paediatric Early Warning Systems (PEWS) within the four nations. PEWS 
are designed to effectively recognise and respond to the deterioration of children or young 
people in a healthcare environment. A parental escalation process is essential to any 
effectively PEWS. We have been collaborating with NHS England and the Royal College of 
Nursing to develop a single national PEWS for England since 2018 and are supportive of 
equivalent processes across the UK.  

4.  LeDeR Role   

The RCPCH has no authority over provision of access to learning disability liaison nurse. We 
do make reference to the importance of the support of these professionals in our revised 
Facing the Future Standards for Emergency Care, which are due to be published in Autumn 
2025.  

It is my understanding that the revised standards will include the following standard:  

 
 
 
 
 
 
 
 
 
 
 •  EDs should have a lead professional for CYP with complex medical needs, learning 
disability and or those who are neurodivergent and access to advice and support 
from a Learning Disability Liaison Nurse. 

Thank you for seeking our views and reminding us of the importance of this work. Our 
sincere condolences are with Rose’s family.  

Yours sincerely, 

RCPCH President

Egerton Road, Guildford, Surrey GU2 7XX 
Tel: 01483 571122  

Dr Karen Henderson  
HM Assistant Coroner for Surrey 
HM Coroner’s Court  
Station Approach 
Woking 
GU22 7AP 

7 July 2025 

Dear Dr Henderson, 

Thank you for conducting a thorough and detailed review of the care provided to Rose Harfleet at 
the inquest which concluded on the 5rd March 2025. I would like to once again take the opportunity 
to extend our sympathy and condolences to Rose’s family and friends and to again apologise for 
the  failings  in  Rose’s  care  that  were  identified  during  the  inquest.  I  welcome  the  opportunity  to 
address the concerns which you have raised in your Prevention of Future Deaths report issued on 
the 13th May 2025. 

In response to the concerns raised in the Prevention of Future Deaths Report: 

1.  The management of children with profound disabilities within a hospital setting  

Much of the national guidance refers to ‘people’ and is often based on reviews/studies related to 
adults  with  Learning  Disabilities.    Guidance  which  specifically  addresses  the  management  of 
children with profound disabilities within a hospital setting is limited and drawn from a number of 
other associated documents. 

The  Trust  has  a  Learning  Disabilities  and/or  Autism  Policy  to  Support  Children  and  Adults  with 
Learning Disability and/or Autism. This has been developed in accordance with other national and 
local guidelines, including the Mental Capacity Act 2005, Learning from lives and deaths – People 
with a learning disability and autistic people (LeDeR) policy (2021), NICE NG93 mental capacity, 
reasonable  adjustments  and  quiet  areas,  NG11  restraint,  Autism  Spectrum  Disorder  in  Adults; 
Diagnosis and Management – Clinical Guide CG142 (NICE 2016), NHSE LD&A Programme 2025 
Digital  flagging  and  hospital  passports  and  the  Equality  Act  (2010).  Specifically  the  Trust  policy 
includes an emergency admission flow chart and information about supporting carers and engaging 
with them in decision making including care and interventions.  

As  part  of  our  commitment  to  engage  in  person  centred  care,  the  Trust  also  engages  with  the 
national Learning Disability Improvement Standards Programme, led by NHS England. The latest 
annual  benchmarking  exercise  was  undertaken  in  2024-25  which  assessed  the  Trust’s 
performance  across  four  areas,  namely  respecting  and  protecting  rights,  inclusion  and 
engagement, workforce development and specialist care and support. This exercise has identified 
key areas of progress, as well as priority areas for development over the next year. 

 
 
 
 
 
 
 
 
 
 
 
 There are educational resources available nationally relating to Learning Disabilities and Autism 
(LD&A).  Locally  the  Trust  has  a  number  of  resources  available  for  staff  which  supports  staff 
awareness of both adults and children accessing services with a Learning Disability. This includes 
information about the following: 

  The Learning Disability & Autism Championship Network – the Trust has champions across many 
areas,  including  the  Paediatric  and  Adult  Emergency  Departments,  and  Hascombe  Childrens 
Ward.  The Champions receive specific training 6 times a year from the Learning Disability and 
Autism Team within the hospital. In total there are currently 49 champions in the Trust. 

  Easy read leaflets titled ‘Going to Hospital’ for children in the Emergency Department and ‘Where 

does it hurt?’ picture communication card.  

  A  pictorial  ‘Hospital  Communication  Book’  which  is  available  on  all  wards,  and  within  the 

Emergency Department and is downloadable from the Trust intranet.  

  Posters have been developed for Adult and Paediatric ED waiting areas to ask patients to let us 

know on check in if they have a neurodiversity. 

  Our digital patient record flag system provides early notification of children presenting to the Trust 

with a Learning Disability.  

There is also a specific national mandatory training package that addresses the needs of patients 
with LD&A called the Oliver McGowan Training.  

The Trust began its collaboration with Surrey Heartlands Integrated Care Board in 2023 to support 
the  implementation  of  Oliver  McGowan  Mandatory  Training  on  Learning  Disabilities  and  Autism 
across Surrey. This standardised training is required for all staff, with completion of either Tier 1 or 
Tier 2 depending on their role within the Trust. 

The first stage of both tiers consists of an eLearning module, accessible via the Trust’s My Learning 
portal, and this is mandatory for all staff, regardless of their clinical or non-clinical role. Tier 2 training 
then progresses to either a full-day face-to-face session or a one-hour interactive online training, 
both  of  which  are  delivered  by  experts  by  experience.  This  training  is  provided  by  an  external 
organisation approved by Surrey Heartlands Integrated Care Board and remains available to all 
Trust  staff  via  the  My  Learning  portal.  Availability  of  face-to-face  training  is  restricted  to  30 
candidates per session in order to support the wellbeing of the training team, some of whom have 
lived  experience  of  Learning  Disability  and  Autism.  The  Trust  has  procured  training  sessions to 
support roll out across the Trust over the next year.  

The full implementation of the training program is in its final phase, introducing the one-hour online 
interactive  session,  which  has  recently  been  made  available  through  the  training  provider. 
Completion rates are monitored by the Deputy Director of Nursing and the Adult Learning Disability 
and Autism Clinical Nurse Specialist. Training is actively promoted through internal communication 
channels, including staff bulletins, posters, and internal networks. 89% of our Paediatric staff have 
completed, or are booked to complete, the face-to-face training, the remaining 11% have recently 
started in post and have completed their on-line training and are awaiting their face-to-face training. 
In  the  Emergency  Department  100%  of  Paediatric  nursing  staff  have  completed  their  on-line 
training and are awaiting their face-to-face training. 

In addition to this mandatory training, we continue to provide Trust-specific training, integrating it 
into staff clinical induction program. The Trust Learning Disability and Autism Team also provide 
Learning Disabilities and Autism awareness training to new starters to the Trust, Foundation Year 
1 and Foundation Year 2 Doctors, International Nurses, and as part of the Health Care Assistant 
Care Certificate Course. Bespoke training is also provided across the Trust tailored to the specific 
needs of departments delivering care. 

 
 
 
 
 The  Trust  has  also  reviewed  the  Royal  College  of  Emergency  Medicine’s  (RCEM)  Learning 
Disabilities Toolkit, published in September 2024 which promotes specific education and training 
for Emergency Department staff. 

2.  Guidelines  -  consultation  with  parents  and  guardians  of  children  with  profound 
disabilities within a hospital setting 

The  Oliver  McGowan  training  and  the  RCEM  Learning  Disabilities  Toolkit  both  promote  the 
importance of engaging with, and listening to, the family or other carers of patients with LD&A and 
this guidance is equally relevant to all patients with profound disabilities of whatever cause. 

Several  of  the  nationally  available  paediatric  early  warning  scores  designed  to  detect  the 
deteriorating patient and trigger additional clinical review also contain a parameter for staff and / or 
family / carer concerns.  

The Trust is not however aware of any specific national guidance on consultation with the parents 
and  carers  of  children  with  profound  disabilities  although  the  Trust  recognises  that  this  is  an 
essential  part  of  good  clinical  practice.    Whilst  not  specifically  related  to  children  with  profound 
disabilities, the Trust is aware of Martha’s Rule, and have been selected to be part of Phase 2 for 
implementing this. Work has commenced to address the three metrics for delivery for adults and 
children. 

  Patients will be asked, at least daily, about how they are feeling, and if they are getting better or 

worse. This information will be acted on in a structured way. 

  This escalation route will also always be available to patients themselves, their families and 

carers, and advertised across the hospital. 

  All staff will be able, at any time, to ask for a review from a different team if they are concerned 

that a patient is deteriorating and their concerns are not being responded to. 

3.  Nursing and Medical care on the ward 

The  Trust  recognises  that  the  care  provided  to  Rose  both  in  the  Emergency  Department  and 
following admission to our Paediatric ward did not meet the high standards that we would expect 
and that communication with Rose’s mother was inadequate. As documented in the response to 
question 2 above the importance of communicating with, and listening to, the patient’s family and 
carers is embedded within the Oliver McGowan Training, the RCEM Learning Disabilities Toolkit 
and the national paediatric early warning scores.  

All clinical staff receive mandatory Oliver McGowan training and appropriate training for staff in the 
use of early warnings scores. In addition to this all Paediatric nurses completed training in confident 
discussions  and  raising  concerns,  pain  management,  Patient  Early  Warning  Score  (PEWS), 
escalations of care and completed simulation training. 7 overseas nurses have also completed the 
Evelina Hospital Principles of Paediatric Nursing Training Course. 

4.  LeDeR Role 

The Trust Adult Learning Disability Liaison service is provided by Surrey and Borders Partnership 
who  are  commissioned  by  Surrey  Heartlands  Integrated  Care  Board  to  provide  1  whole  time 
equivalent (wte) band 7 and 0.8wte band 6 Adult Learning Disability nurses. This service supports 
patients with a Learning Disability who are registered with a Surrey Heartlands GP who are aged 
18  and  over.  There  is  no  commissioned  service  for  a  paediatric  Learning  Disability  and  Autism 
nurse. 

 
 
 
 
 
 In addition, the Royal Surrey Foundation Trust funds 1 wte Adult Clinical Nurse Specialist (CNS) 
and  1  wte  Children  &  Young  People’s  CNS.  They  provide  support  to  patients  with  Learning 
Disability as well as autistic patients. They can provide support to patients from any geographical 
area. This provision is unique to the Royal Surrey, in that we are the only Trust within our ICB with 
a designated Children and Young People’s (CYP) Learning Disability and Autism Clinical Nurse 
Specialist.  

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

The  Trust  is  also  aware  of  the  National  Confidential  Enquiry  into  Patient  Outcome  and  Death 
(NCEPOD). NCEPOD is currently conducting a study on acute illness in individuals with a Learning 
Disability,  commissioned  by  Healthcare  Quality  Improvement  Partnership  (HQIP).  The  aim  is  to 
identify avoidable and modifiable factors in the care of patients with a learning disability who are 
admitted to hospital in a critical condition. This is mainly related to adults with a Learning Disability. 

RSFT’s  Learning  Disability  and  Autism  Clinical  Nurse  Specialist  for  adults,  an  intensive  care 
consultant, and the sepsis lead nurse have all been selected as reviewers for this study and are 
actively participating in case evaluations. During a recent review meeting, the Learning D&A nurse 
proposed  Quality  Improvement  projects,  including  the  development  of  a  Learning  Disability 
Admission  Checklist  at  RSFT.  This  checklist  will  provide  key  prompts  for  staff  when  admitting 
patients to Emergency Departments and establish a system to record reasonable adjustments that 
help ensure equitable access to Trust services. The Trust is taking this initiative forward in Quarter 
3, 2025. 

Thank you for the opportunity to respond to your concerns and I hope that the information contained 
within this letter is useful. Royal Surrey Foundation Trust will continue to promote education and 
training  addressing  the  care  of  patients  with  profound  disabilities  and  will  take  forward  quality 
improvement work such as the Learning Disability Checklist mentioned. 

Yours sincerely, 

Group Chief Executive