Dear Ms McCormick Thank you for your Report to Prevent Future Deaths dated 15th July 2024 concerning the death of Megan Leanne Davison on 4th August 2017. In advance of responding to the specific concerns raised in your report, I would like to express my deep condolences to Megan’s family. Hertfordshire and West Essex Integrated Care Board (ICB) are keen to assure the family and the Coroner that the concerns raised about Megan’s care have been listened to and reflected upon. Within your report you have detailed three specific matters of concern, I have addressed each in turn below;

1. On a national level there is not a system which is capable of being operated in a way which will ensure proper integrated healthcare for patients with Type 1 Diabetes with Disordered Eating (T1DE). Specifically, there is no formal diagnosis for T1DE, no treatment pathway for T1DE and no complete treatment pathway for Diabetic Ketoacidosis. We note that your report has also been sent to the Secretary of State for Health due to the national matter of concern identified. I will therefore not respond further on this specific issue.

2. At a local level in East and North Hertfordshire there is no integrated healthcare system for patients with diabetes and eating disorder as there is in the west of the county. The ICB recognises the complex needs of patients such as Megan who have both type 1 diabetes and disordered eating (T1DE), and that these needs are best identified and managed through coordinated care and case management. The development of national advice on diagnosis and

, Chief Executive

, Chair management of T1DE (as per the above item) would help to strengthen improvement locally and more widely. The ICB commissions diabetes services and in East and North Hertfordshire and there is collaborative working between community and acute diabetic teams, with a history of shared clinical posts. In General Practice, the ICB has invested in improvements in diabetic care as well as enhanced physical health checks for people with mental health conditions. Investment has also been made into Talking Therapies for people with long term physical health conditions, including diabetes. The ICB has worked with local mental health providers to improve access and care for people with an eating disorder or disordered eating, with associated additional community service transformation funding. The ICB is working closely with NHS England’s regional mental health and transformation team, to learn from recent national pilots to trial pathways for T1DE patients and apply this within the Integrated Care System (ICS). The regional team have confirmed they are happy to work with the ICB to ensure any learning from the pilots, as well as relevant national guidance, can be incorporated into our local model. Locally, Mental Health commissioners lead an implementation group with membership from all ICB partners including primary care, community commissioning, regional teams, the voluntary sector, service users, and carers to support quality improvement and delivery of eating disorder services and physical health checks. This work will inform further pathway development and improve access to physical health services for people with serious mental health conditions. Across the ICS, complex patients requiring case management are now proactively identified and managed through local Integrated Neighbourhood Teams. These bring together professionals from across relevant services to understand the holistic needs of individuals and develop joint plans. Where necessary, the ICB (via its clinical teams) can help to organise case-based discussions. We are reinforcing the availability of this support and ensuring there is a clearer process for local providers to escalate cases to the ICB. If a patient is identified as needing joint input from diabetes and mental health services, the ICB can convene a case conference as appropriate, with the relevant teams to develop an agreed management plan. Details on how local providers can access this process will be in place by November 2024, enabling clinicians to make best use of this support. To address variation in service provision within different parts of the ICS, the ICB is working with local providers to develop a new, integrated model of diabetic care reflecting the needs of all diabetic patients. This includes the management of complex cases involving multi-disciplinary case management, including mental health support.

3. Whilst there have been significant advances in developing shared clinical records systems across primary and secondary care since Ms Davison's death in 2017, none of the shared records systems extends to organisations which are deemed to be private

, Chief Executive

, Chair providers, such as The Priory. You have heard evidence from the Chief Medical Officer of The Priory that record sharing which includes private providers would help to prevent future deaths. When considering shared clinical records there are two areas that we need to review; the technological aspect and then the data sharing arrangements that are in place. The model for all shared care records is that when an appropriate clinician or carer opens the patients record on their local electronic patient record, they then click on a shared care record, and it will display any data held for that patient. Within Hertfordshire and West Essex Integrated Care System our ambition is to give access to any appropriate person providing care. However, a phased approach to implementation is required to manage this safely as well as due to the significant costs involved. To provide access to the shared care record requires a connection to each care providers system which involves technical integration, information governance process and ongoing revenue funding for that connection. Within the current phase of work, the ICB now has a shared care record with a rich volume of data being shared from a number of organisations connected; this does include some private providers such as local hospices. Our future plan is to be able to extend the roll out to as many providers as possible including private providers and we do recognise the benefit this will bring in relation to patient safety. We are mindful that national funding for this work was reduced in 2023/24 and we are awaiting clarification regarding future funding for 2024/25 and beyond; this has meant that we have not yet been able to roll out further at this stage. Hertfordshire and West Essex ICB has made our views known on this point and we hope to progress with further implementation should further national funding be identified. In relation to data sharing agreements, the East of England Region uses “MyCareRecord” which enables health and care professionals to securely access patient information, across different organisations that are part of the MyCareRecord agreement. Currently Hertfordshire and West Essex ICB host MyCareRecord on behalf of the whole region. In a similar way to the shared care records described above, there are funding challenges that we are currently looking to resolve regionally. In order to extend this to more care providers, additional funding is needed to both connect up new providers and to safely and securely maintain the technology. In the meantime, we continue to work with local providers to ensure that patient information relating to their care is shared appropriately on a case-by-case basis. Additionally, the report to prevent future deaths will be shared with the local System Quality Group, and discussed, to ensure wider learning from Megan’s death and the valid matters of concern that you have identified.

Dr Jane Halpin, Chief Executive

Rt. Hon. Paul Burstow, Chair Thank you for bringing these important patient safety issues to my attention. I do hope my response provides some assurance to you and Megan’s family regarding the actions being taken in relation to the care provided to patients within east and north Hertfordshire with type 1 diabetes and disordered eating. Please do not hesitate to contact me should you require any further information or clarification.

Dear Ms McCormick, Thank you for the Regulation 28 report of 15 July 2024 sent to the Department of Health and Social Care about the death of Megan Leanne Davison. I am replying as the Minister for Patient Safety, Women’s Health, and Mental Health.

Firstly, I would like to say how saddened I was to read of the circumstances of Megan’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. Thank you for the additional time provided to the department to provide a response to the concerns raised in the report. You have raised concerns about the treatment pathway for Type 1 Diabetes with Disordered Eating (T1DE) and Diabetic Ketoacidosis (DKA), the lack of a local integrated healthcare system for patients with diabetes and disordered eating and the development of shared clinical records across NHS and private providers. In preparing this response, departmental officials have made enquiries with NHS England and Hertfordshire and West Essex Integrated Care Board.

I would like to assure you that since Megan’s death, NHS England has provided funding for eight Integrated Care Boards (ICBs) across the country to support the development and establishment of T1DE services in every NHS region. Patients in Hertfordshire and West Essex are able to access these pilot services. To support greater understanding, NHS England invested £4.5m in pilots to test, trial and evaluate the effects of integrated diabetes and mental health pathways for the identification, assessment and treatment of people with Type 1 diabetes and disordered eating. Central to the service model delivered in the eight pilot sites, which are distributed in each region of the country, is delivery of a model treatment and care pathway that integrates various healthcare disciplines, including diabetes and mental health to address the complex nature of T1DE. Funding has been provided on a pump prime basis and the responsibility for the longer-term sustainable provision of care for these patients sits with Hertfordshire and West Essex Integrated Care Board. A nationally commissioned evaluation has shown the positive impact that the provision of T1DE services can have for patients, including reductions in HbA1c, which is linked to reduced rates of diabetes complications, and reduced rates of emergency admissions. It is expected that ICB leads should consider these evaluation findings in making decisions about the future provision of T1DE services. NHS England is drawing on learning from existing T1DE services, other emerging evidence and the findings of the recent ‘Type 1 diabetes and disordered eating’ parliamentary inquiry on the 23 January 2024, to ensure all areas of the country are supported to improve care for those identified as having T1DE. The emergence of these future plans are subject to future spending review settlements for the NHS and level of funding from the NHS England budget allocated to T1DE. Evaluation by the NHS of the initial Type 1 Diabetes with Disordered Eating service (T1DE) pilot sites (in London and Wessex) demonstrated a mean reduction in HbA1c of between
2.3% to 2.5%. Assuming that this level of reduction is maintained, the lifetime QALY gain of these services was estimated at 1.49, which would be cost effective up to a net lifetime cost of £29,800-£44,800. In response to these initial evaluation findings, NHS England expanded the T1DE programme, supporting provision of new services in an additional five sites from September 2022, expanding coverage to more areas of the country. It is expected that these services will generate further evaluation data to consolidate these early findings, which can be used to inform national and local policy decisions. NHS England is also working closely with the first wave of pilot sites including London to ensure that the newer services can benefit from their learning and experience when considering local funding options in advance of March 2025, when the national funding for the five new sites will come to an end.

NHS England is assisting ICBs to develop local funding arrangements through the provision of evaluation data, a national programme of support workshops, and an online platform to share learning and good practice. With regard to the lack of a local integrated healthcare system for patients with diabetes and disordered eating in East and North Hertfordshire, it is essential that mental health services meet patients' physical as well as their mental healthcare needs either through their own appropriately qualified and experienced staff or in partnership with other providers. This requires mental health workers to be provided with adequate training and guidance on monitoring physical health, and importantly how to escalate and respond to concerns as needed. The ICB commissions diabetes services and in East and North Hertfordshire and there is collaborative working between community and acute diabetic teams, with a history of shared clinical posts. In General Practice, the ICB has invested in improvements in diabetic care as well as enhanced physical health checks for people with mental health conditions. Investment has also been made into Talking Therapies for people with long term physical health conditions, including diabetes. The ICB has worked with local mental health providers to improve access and care for people with an eating disorder or disordered eating, with associated additional community service transformation funding. Thank you for also highlighting your important concerns about the pressures on NHS mental health services, the interface between private practitioners and NHS providers and the sharing of medical information between the two. I note that your report has also been sent to the Hertfordshire and West Essex Integrated Care Board as this is a local matter and I would expect that the ICB will want to ensure the appropriate steps are taken in response. I hope this response is helpful. Thank you for bringing these concerns to my attention.

All good wishes