Alice Sloman

Respecting everyane

Our hospitais.

INHS

University Hospitals Bristol
NHS Foundation Trust

Trust Headquarters

Marlborough Street

Bristol, BS1 3NU

eb-site: www.uhbristol.nhs.uk

11 February 2020

Our Ref: UHB/INQ/18/44
Your ref: 12525

Dr Simon Fox, QC

H.M. Assistant Coroner for the Area of Avon
The Coroner's Court

Old Weston Road

Flax Bourton

BS48 1UL

Dear Dr Fox,
Alice Sloman — Regulation 28 Report

| am writing to you in my capacity as Chief Executive of University Hospitals Bristol NHS
Foundation Trust (‘UHB’) to respond to the Regulation 28 Report dated 16 December 2019.

Following on from the Inquest, the conclusion and Regulation 28 Report were considered at UHB’s
Inquest Core Group, Risk Management Group, and Quality and Outcomes Committee, attended by
the Divisional Management Teams of all 5 clinical Divisions, to ensure that the learning was
embedded beyond the Women’s and Children’s Division and the Board were sighted on the events
surrounding Alice’s death.

We have been working closely with Torbay and South Devon NHS Foundation Trust to provide you
with assurance around a timetable of actions we are collaborating on and which UHB intends to
implement in response to this report.

Extensive discussions have taken place between the two Trusts, at specialty and senior level, to
finalise the Principles of Shared Care for Endocrine referred to at the Inquest. In addition, we have
developed a patient information leaflet to ensure that patients and their families understand which
lead clinician has overall responsibility for their care when they are treated at a regional clinic. This
action is key to addressing your concern that Alice was under the care of a number of clinicians, yet
a referral to a geneticist was not made.

Furthermore, it is recognised by both Trusts that the shared care model requires the agreement of
all parties, including the patient, and the leaffet and Principles will strengthen the communication, in
the hope that concerns, such as the symptoms it became apparent Alice suffered from at the
Inquest, are brought to the attention of the team caring for her, and, in particular, the lead clinician.

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UHB is committed to finalising the Principles of Shared Care and the patient information leaflet
reflecting such principles by the end of March 2020, recognising that both Trusts are close to
adopting these within their respective organisations.

In respect of our wi igations, the Divisional Director for the Women’s and Children’s Division
at UHB met with | Medical Director for Specialist Commissioning (South West) of NHS
England on 10 December 2019 to discuss the regional clinics hosted by UHB. It has been agreed
that Service Levels Agreements will formalise the agreements in place with clear lines of
accountability and responsibility. As part of the ‘hub and spoke model’ detailed within the
Principles, we support a number of specialties in the region. The review of the governance and
operational management of the regional clinics is underway and it is envisaged that this will be
completed within the next 12 months.

We trust that the above actions provide you, and the stakeholders with which you have shared the
Regulation 28 Report, with assurance that UHB has learnt from this Inquest.

Yours sincerely,

LIM,

Robert Woolley
Chief Executive

|

Enc: Principles of Shared Care

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Frobracing chia — Se of. University Hospitals Bristol NHS Foundation Trust
Working together “¥VS 0117 923 0000 Minicom 0117 934 9869 www.uhbristol.nhs.uk

Our hospitals.

NHS)

Torbay and South Devon
NHS Foundation Trust

Trust Headquarters
Torbay Hospital
Lowes Bridge

TORQUAY

: TQ2 7AA

Dr S Fox Direct Line: 01803 655702

Assistant Coroner =-Mall: Fax Number: 01803 616334

The Coroner's Court Website: http:/Awww.torbayandsouthdevon.nhs.uk

Old Weston Road : Your Ref

our Ref:

Flax Burton Our Ref: LD/SF/016

BS48 1UL Date: 10" February 2020
Dear Dr Fox

Ref: 12525, Regulation 28 Report to Prevent Future Deaths

lam responding to the Regulation 28 report issued by you on 16" December 2019 relating to the
death of Alice Marie Sloman.

The concern that is outlined in the regulation 28 report (12525) is that during the period of
investigation and monitoring of Alice’s medical problems under the shared care of TSD and
University of Bristol Hospitals NHS Foundation Trust (UBHFT) she was not referred for a Clinical
Geneticist’s opinion.

A report summarising the findings of the investigations and the inquest into the death of AS and
the actions arising therefrom was approved at the TSDFT Board on 5" February 2020. The Trust
accepts without reservation that it would be expected that a child presenting to a clinical team at
TSDFT with the combination of problems that Alice had should be discussed with and referred to
the Regional Clinical Genetics Service in Exeter. The actions that we have taken in the Trust
relate not only to ensuring that the place of referral to Clinical Genetics is understood but also to
ensuring that clinicians providing care for children with complex problems are better aware of the
symptoms experienced by those children through closer communication with all agencies
involved in their care and with families.

The summary of the inquest into the death of Alice Sloman have been discussed with the specific
clinicians involved in her care and subsequently the broader clinical teams of Paediatrics and
Anaesthetics.

Summary of concerns identified by the inquest

Communication between teams within the Trust and with local partners in care.

’ It has been agreed that the clinicians responsible for investigating and supporting Alice did not
have access to all the relevant information about her day to day problems that would have
prompted consideration of further investigation, including referral to the Clinical Genetics service.
The leads of the Paediatric service at TSDFT have undertaken to review the processes in place

to support coordination of care for children with complex needs and to make recommendations
for improvements that will reduce the likelihood of a similar situation occurring. This will include
the support needed by consultants and other clinical staff and the Trust policies relating to
sharing of information both within and outside the Trust. This review will be presented at the
Trust Quality Improvement Group for sharing of learning and recommendations for change in
service and Trust support will be made to the Trust Board through the Quality Assurance Group.

Action 1 — Review of communications and coordination of care within Paediatrics. Leads —
Associate Medical Director and Clinical Service Lead for Paediatrics. To complete by 1 May
2020 and present at Trust Quality Improvement Group May meeting. ,

Shared care between TSDFT and specialist supporting services from UBHT

In the context of shared care between TSDFT and a specialist provider, in this case UHBFT, we
accept that it is crucial that there is clarity between the clinicians involved in the care of a
complex individual about individual responsibilities. A shared care guideline has been agreed
between TSDFT and UBHFT, based on this case, that will be used in the future to ensure that the
learning is acted upon. An equivalent level of importance is attributed to ensuring that the family
and/or carers understand the roles of members of the clinical team when care is shared between
TSDFT and UHBFT and that they understand their crucial role in sharing information about the
problems and symptoms experienced by their child. This is set out in the shared care guideline
and reinforced in information leaflets developed jointly by the two trusts.

Action 2. Development of a shared care guideline and information leaflets and communication
aids for parents and carers. Leads — Associate Medical Director and Clinical Service Lead for
Paediatrics in conjunction with counterparts at UHBFT. Action complete.

Action 3. A process will be agreed to ensure that teams adopt the shared care guidelines and |
communication aids. This will be audited to ensure compliance. Leads ~— Associate Medical
Director and Clinical Service Lead for Paediatrics. Audit of use of the documents to be
completed 1° July 2020.

Referral to the Regional Clinical Genetics Service

Detailed discussion has taken place since the findings of the inquest between the clinical leads of
the Paediatric service at TSDFT and the lead clinician of the Regional Clinical Genetics Service

_ in Exeter. A plan has been agreed to ensure that there is good understanding across the
specialty of Paediatrics at TSDFT of the place of genetic testing in reaching a diagnosis where
there are complex features. Actions include:

Action 4. Attendance by a Genomics nurse from Exeter at a Paediatric departmental meeting on
5! February 2020 to explain the Regional Genetic Service. Action Complete.

Action 5. The Head of the Regional Clinical Genetics Service is attending a meeting on 26"
February 2020 with the Paediatric clinical teams to consider the issues relating to the case of AS.
This will include review of the present referral guidelines to the genetic service and dissemination
to all Paediatric clinical team members. ;

Action 6. A twice yearly educational contact at established clinical educational meetings held by
the senior TSDFT Paediatric team starting on the 26" February and then in September 2020.
Lead — Clinical Service Lead for Paediatrics.

Action 7. Agreement that individual members of clinical teams consider their personal needs for
update in relation to the genetic aspects of paediatric care. Any additional training and its cost
will be supported by the Trust. Clinical Service Lead to assess completion by 1% May 2020.

Action 8. Establishment of a regular advice point during/after the monthly clinics undertaken by
the Regional Clinical Genetics Service in TSDFT. Commencing May 2020. Lead Clinical Service
Lead and Operational Manager for Paediatrics.

In the spring of 2019 the Trust invited the involvement of the Healthcare Services Investigation
Branch (HSIB) as we believed there was potential learning at a national level from the death of
Alice Sloman. We strongly support the recommendations that HSIB has made for review by
national bodies of practice in relation to pre-anaesthetic assessment and consent which may
reduce the likelihood of a child in the future undergoing general anaesthetic with undiagnosed
cardiomyopathy.

The learning from this tragic case has had a profound impact on the clinical teams involved in
Alice’s care.. We strongly believe that the actions described will contribute to the prevention of |
future deaths in this Trust. : ; 4
Yours sincerely

With best wishes

Yours sincerely

Liz enport
Chief Executive