Catherine Jones

Dear Mr Gittins,

Re: Regulation 28 Prevention of Future Deaths report – Catherine Lisa Jones (deceased)

I am writing in response to a Regulation 28 Report to Prevent Future Deaths (the report), which I received on 12 December 2023, following the conclusion of the inquest into the death of Catherine Lisa Jones which occurred on 10 November 2016.

I would like to offer my sincere condolences to Ms Jones’ family on their sad loss.

In the report you raise a number of matters of concern, including the absence of cohesive care and treatment for patients, and difficulties for clinicians in providing appropriate diagnosis and treatment for patients, as a result of information not being readily accessible or available within patients’ clinical records in the absence of electronic records.

You also referenced a letter of 18 October 2023 which the Deputy Minister for Mental Health and Wellbeing and I jointly sent to you and Kate Robertson, the Senior Coroner North West Wales, in response to matters of concern raised in an earlier Regulation 28 report following an inquest into the death of RGG.

In that letter, we confirmed that we aim to implement a new electronic service joining up clinical systems and data across all care sectors during the Summer of 2026. It is important to note that the programme scope and timescales described in that letter relate to community settings and would not be expected to directly impact on the circumstances described in the report into Ms Jones’ death.

I am aware that at the inquest clinicians reported difficulties in accessing records. These I believe related to in-hospital record sharing between teams, whilst our letter referenced a previous report that highlighted concerns about the sharing of data in the community and

between different organisations. We recognise these are both serious issues which we are committed to resolving.

The Welsh Government’s Digital and data strategy for health and social care in Wales sets out our ambition to improve digital infrastructure and connectivity to deliver a secure and sustainable foundation for seamless sharing of health and social care data across services and sectors. This will be delivered by working with organisations, in particular Digital Health and Care Wales, health boards and local authorities to improve how information is shared and accessed across care provider settings.

I include below several examples in Wales where digital initiatives are being rolled out at pace to effectively communicate and share information about the right patient, in the right place, at the right time:

• The Welsh Nursing Care Record went live in 2021, allowing staff to record, share and access patient information electronically across wards, hospital sites and health boards. It has also standardised information collected about patients in hospitals, eliminating variation. Patients and staff are able to move across services in Wales using this single system, ensuring consistency and accuracy. Digital assessments involved in a patient’s care journey are available to all clinical teams via the national digital patient record, the Welsh Clinical Portal (WCP).

• The Digital Medicines Transformation Portfolio (DMTP) is making the prescribing, dispensing and administration of medicines everywhere in Wales easier, safer, more efficient and effective through digital transformation and functionality. It will result in a shared medicines record for patients in Wales, ensuring that all medication information for a patient is in one place, including current and previous medicines and in due course patient-entered information on over-the-counter medicines (some of which can have a reactionary effect on prescribed medications). Primary Care digital medicines was announced in Rhyl at the end of November 2023 as being live in Wales and is now in the process of being rolled out. All seven health boards (plus Velindre NHS Trust) are in the process of planning for the implementation of secondary care digital medicines.

• Specifically for cancer care, the Cancer Informatics Programme (hosted by Digital Health and Care Wales and being run on an all-Wales basis) is replacing the legacy CaNISC software used for recording details of cancer care. The new Cancer Informatics Solution (CIS) began implementation during 2022 and makes available a number of new clinical records that can be viewed through the Welsh Clinical Portal. This includes an outpatient oncology note, an inpatient oncology note, a radiotherapy treatment summary, a systemic anti-cancer therapy treatment summary, and records of multi-disciplinary meetings. Histopathology and radiology reports are also visible through the all-Wales care repository for documents (WCRS) and an all-Wales repository for results and reports (WRRS), also within the Welsh Clinical Portal. This means all the key clinical documents can be viewed electronically in the Welsh Clinical Portal to support integrated cancer care across clinical teams. It also includes functionality to notify the clinician of any new histopathology reports they have requested, so that the clinician does not need to go into each individual patient record to determine if there are outstanding results to review.

Therefore, histopathology test results are available for clinicians digitally. In line with 'Mission 3’ of the Digital and Data Strategy for Health and Social Care we will work with NHS Wales to rationalise the number of systems that clinicians need to access to obtain the data needed for patient care regardless of the setting they present at, making it simpler for them to identify relevant data.

We recognise the need for investing in developments to digital shared care systems and services to improve data sharing between settings and organisations across NHS and Social Care sectors. Working closely with our partners, the Welsh Government will endeavour to make every effort to encourage and support the implementation, and to increase the usage and spread, of Digital Health and Care Record systems by health boards and local authorities.