Written question WQ89889

The Welsh Government is committed to improving the lives of those affected by rare disease in Wales. In 2022, the NHS published the Wales Rare Disease Action Plan, which forms part of the UK Rare Disease Framework, and has been supported by the Wales Rare Disease Implementation group (RDIG). A revised plan outlining progress is due in this month (December 2023). RDIG sits within the NHS Executive and their role is to oversee the national plan whilst supporting health boards to deliver their local plans. The group is currently reviewing their form and function as they transition towards a network within the NHS Executive. Their aims will be to support non-genetic (auto immune) and genetic rare disease conditions.

There are between 5,000 and 8,000 rare diseases. Relevant condition specific networks (for example cancer, cardiac, MSK, etc.) consider the services and management of specific rare diseases. RDIG work with other networks and international partners to ensure alignment and shared knowledge, whilst providing a support mechanism to health boards.

In relation to those impacted with rare autoimmune rheumatic diseases (RAIRDs) in Wales, we are committed to supporting this area of work. In October we published the Quality Statement for Musculoskeletal (MSK) Health, setting out key service priorities for the development of better MSK care throughout the life course. In the coming weeks we will publish our consultation on the Arthritis and MSK Conditions framework to further strengthen services within health boards for those living with MSK conditions, including RAIRDs. Multidisciplinary and person-centred care are recognised as key drivers for service development.

As part of the new National Clinical Framework, the NHS Executive has identified MSK conditions as one of the top priority Strategic Networks in Wales. Support for RAIRDs will be considered within this group, alongside the Rare Disease Implementation Network upon establishment.

Furthermore, following consultation with Lupus UK, the Centre for Healthcare Evaluation, Device Assessment and Research (CEDAR) have agreed to undertake an evaluation project on behalf of the Welsh Government to understand the realities of Lupus pathways and services across Wales. This evaluation is due to be completed by April 2024.

Ultimately, health boards are responsible for providing services for the whole of their population, including those with rare autoimmune diseases, and we would expect them to be delivering care in line with the latest available guidance and /or standards.