Working towards equity of access for care and treatment for Mesothelioma in Wales

By Mesothelioma UK Senior Nurse Specialist and Project Lead for Wales, Sarah Morgan

We are very excited to report that we now have confirmation from the Welsh Health Specialised Services Committee (WHSSC) for the inclusion of mesothelioma as part of the Specialist and Tertiary commissioned services in Wales. WHSSC has agreed funding to establish a single multidisciplinary team for mesothelioma in Wales, to ensure a single national approach to mesothelioma management.

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 and quality of services.

Mesothelioma is a rare cancer, with ~100 new cases diagnosed each year in Wales. 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.

I have tirelessly raised awareness of mesothelioma throughout Wales, and have emphasised the need of an all-Wales approach. Mesothelioma UK 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. The project 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 to all.

The establishment of a specialist mesothelioma multidisciplinary team for Wales will facilitate a single national approach to diagnosis, treatment and management for mesothelioma. The example of the Scottish Mesothelioma Network has been inspirational for us in Wales and we look forward to using a hub and spoke model, such as in Scotland, to achieve a single nation approach in Wales.

The recent delay by the National Institute for Health and Care Excellence (NICE) in consideration of approval for first line immunotherapy with Ipiliminab and Nivolumab for use in the NHS has caused great distress for many patients in Wales – Scotland has agreed this treatment as an independent devolved nation. Wales will have a strong voice as a single multidisciplinary team approach to mesothelioma management and will ensure the best decisions are made for the best interests of patients in Wales.

One Welsh patient commented: “We are aware that immunotherapy is being used in the NHS and were hopeful that NICE would add it as a first line treatment option for mesothelioma. We knew this was up for discussion on 28 April (that was postponed). Scotland approved immunotherapy as first line treatment available via NHS for mesothelioma on 22 February. Why can [we] not have this in Wales? We feel crushed, confused and upset at the delay from NICE.

“We were able to fund the first few treatments ourselves but without selling our house we will be unable to fund any further immunotherapy.

“The optimistic future we were beginning to see has now been snatched away from us. I cannot understand why immunotherapy treatment for this dreadful disease is not a priority, this treatment [which] is clearly working for [Patient X].”

We are hugely optimistic about the potential to improve services and support for patients and their families across Wales. Ensuring a single national approach to mesothelioma management, with support from WHSSC, is critical to providing equitable, quality services for mesothelioma patients in Wales.

An update from our Mesothelioma UK ambassador

Our Mesothelioma UK ambassador, Brian Wallis shared the following update recently... The East of England Patient Support Group (CIO) supported Action Meso Day 2022 and Go Blue for Meso over the weekend of 1 July by attending the locations of Ely Cathedral,...