We are now entering the final six months of Mesothelioma UK Project Cymru. We have been assessing what we have learned so far and how that informs what we do next. Given the scale of the challenge highlighted in the scoping work and the example of the Scottish Mesothelioma Network, it suggests we need to secure significant funding and additional support to move forward.
The project has raised awareness of mesothelioma throughout Wales, and has emphasised the need of an all-Wales approach. The project has identified the need for increased knowledge and awareness of the disease, as well as the importance of national guidelines to ensure all patients in Wales receive appropriate access to the best diagnostics, treatments, trials and care available.
Mesothelioma is a rare cancer, with around 100 new cases diagnosed each year in Wales. As a devolved nation, NHS Wales does not have the appropriate safeguards in place as seen in NHS England and NHS Scotland, such as national service specifications, optimal pathways, and quality performance indicators for the diagnosis, treatment and management of mesothelioma.
As part of Project Cymru, Sarah Morgan, our Mesothelioma Senior Clinical Specialist Nurse and Project Lead for Wales has worked closely with (AASC) Asbestos Awareness Support Cymru (AASC) to ensure support is available throughout Wales for patients and families of those effected by mesothelioma. CafeAASC is a virtual support group via Zoom and was set up in October 2019 as a response to the COVID-19 pandemic. This monthly forum has proven to be invaluable in providing specialist support and advice on a monthly basis for all those attending the meeting.
In August 2021, we submitted an application to the Welsh Health Specialised Services Committee (‘WHSCC’) for the inclusion of mesothelioma as part of the Specialist and Tertiary commissioned services in Wales, and we hope to receive a decision by April 2022. WHSSC was established in 2010 by the seven Health Boards in Wales to ensure that the population of Wales has fair and equitable access to the full range of specialised services. In establishing WHSSC to work on their behalf, the seven Health Boards recognised that the most efficient and effective way of planning these services was to work together to reduce duplication and ensure consistency.
Project Cymru has prioritised engagement with those affected by mesothelioma, as well as all those involved in the management of mesothelioma, to advocate a voice for change in Wales.
In December 2021, Sarah Morgan, was asked to appear on BBC News Cymru to comment on the incredibly sad case of Jason, a 45-year-old father, who died within six months of receiving a mesothelioma diagnosis, resulting from occupational exposure to asbestos as an IT worker.
This story had a huge impact and the BBC were able to quote a Welsh Government spokesperson as saying: “The Welsh Health Specialised Services Committee has agreed to begin commissioning mesothelioma services to achieve a single national approach to treatment. A single multidisciplinary team for Wales will be established next year.”
We are eagerly awaiting more news on the outcome of the WHSSC discussions.
We are hugely excited about the potential to massively improve services and support for patients and their families across Wales. Giving patients a voice is key to developing these services.