Dear Dr Fox Ref: 12525, Regulation 28 Report to Prevent Future Deaths am responding to the Regulation 28 report issued by YOu on 16th 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 5th 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 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 day

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 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 f 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 andlor 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 1st 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 5th 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/h February 2020 with the Paediatric clinical teams to consider the issues relating to the case of AS. This wili 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 26th 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 1st May 2020. Action &. Establishment of a regular advice point duringlafter the monthly clinics undertaken by the Regional Clinical Genetics Service in TSDFT. Commencing May 2020. Lead Clinical Service Lead and Operational Manager for Paediatrics 7st

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. Yours sincerely With best wishes

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 Iead clinician has overall responsibility for their care when are treated at a regional clinic. This action is 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 leaflet and Principles will strengthen communication, in the hope that concerns, such as the symptoms it became apparent Alice suffered from at the Inquest; are brought to attention of the team caring for her, and, in particular; the lead clinician; Respecting everyone Emlracing change University Hospitals Bristol NHS Foundation Trust Recogiisimng success Working fogethier 0117 923 000 Minicom 0117 934 9869 www uhbristol nhsuk Disabl e Our hospitals. Area they key the the Abou7 0 1

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 wider_obligations, 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 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.