Dear Mr Knox,

Regulation 28 Prevention of Future Deaths report – Pamela Singh (deceased)

Thank you for your letter of 18 September, enclosing a copy of a Regulation 28 Prevention of Future Deaths report following the conclusion of the inquest into the death of Pamela Singh. Please extend my condolences to Ms Singh’s family.

I am aware of the evidence highlighting the significantly increased mortality risk among people with a learning disability, as well as the challenges in recognising signs of deterioration. Pneumonia remains an important cause of avoidable death.

I acknowledge the importance of ensuring care staff are equipped with the appropriate resources and training to identify and escalate concerns about acute deterioration, particularly in people with learning disabilities and in a community setting.

All providers of regulated services are required, under Care Inspectorate Wales (CIW) regulations, to ensure their staff are fully competent to carry out their roles. As the workforce regulator, Social Care Wales mandates continuous professional development as a condition of registration.

It is the responsibility of the local authority or commissioning body, when setting care plans, to ensure appropriate and relevant training, such as RESTORE2, is in place for care workers to support individual’s needs.

RESTORE2 is a physical deterioration and escalation tool based on nationally recognised methodologies. It prompts consideration of presenting indications of someone who has presented as unwell and stands for Recognise Early Soft-signs, Take Observations, Respond, Escalate.

In April 2022, the Welsh Government launched the foundation phase of the Paul Ridd Learning Disability Awareness Training Programme for NHS staff. This was created in memory of Paul Ridd, a man with a learning disability who died in 2009 due to avoidable failures in hospital care in Wales. His family campaigned for better training for healthcare staff, which led to this programme becoming mandatory for all public-facing NHS Wales staff. To date, more than 80,000 NHS staff from across Wales have completed the training. The training is available through NHS Wales platforms, like the Electronic Staff Record (ESR) and Learning@Wales and is supported by the Paul Ridd Foundation. While RESTORE2 focuses on identifying and responding to physical deterioration (especially in care homes), the Paul Ridd training focuses on recognising and supporting people with learning disabilities in all healthcare settings.

The Welsh Government is working with NHS Performance and Improvement, Social Care Wales and Health Education Improvement Wales (HEIW) to adapt the Paul Ridd to roll it out to the social care workforce and to the wider public sector. In addition, we are working closely with HEIW to develop tier 2 (enhanced) and tier 3 (advanced) training for health and social care professionals who work more regularly or intensely with people with learning disabilities.

From 1 April 2025, learning disability annual health checks have been incorporated into the GP Wales core contract. Previously, these checks were only offered by some GP practices. Now, all adult patients with a learning disability who are registered with a GP practice are entitled to receive a learning disability check every year. The purpose of these checks is to aid early identification, diagnosis and treatment of health issues, helping to prevent and manage health concerns while also providing education and healthcare advice to individuals.

Health boards are responsible for ensuring every adult with a learning disability is offered an annual health check. The Welsh Government is providing health boards with additional funding this year to embed the change and support GP practices. We are also improving data reporting by requesting GP registers of learning disability patients are up to date, eligible individuals are offered a health check, and the number of people taking up this offer is recorded. Working with NHS Performance and Improvement, we are supporting enhancements to ensure high-quality checks are undertaken. This year is likely to be a transitional year while the new process beds in and staff are trained. We will be closely monitoring uptake and impact to ensure the needs of people with learning disabilities are being met.