It’s been just over a year since Mesothelioma Project Cymru was launched, with the aim of assessing the needs of patients and to enhance mesothelioma services across Wales, ensuring that all patients receive the standards of care outlined by the British Thoracic Society and UK Mesothelioma Alliance. Much has been achieved but there is still a long way to go to ensure equitable care for mesothelioma patients in Wales.
The project has benefitted from enormous support from wide ranging groups including professionals from all health boards and specialisms, national governing bodies, charities, patient groups and solicitors. The project has raised the profile of mesothelioma in Wales and led to a significant increase in requests for support and information from Sarah Morgan, Mesothelioma UK Senior CNS and Project Lead for Wales.
This engagement with patients, carers, family, and healthcare professionals has been critical in assessing the mesothelioma pathway and needs of patients across Wales. The needs identified are further supported by a review of the latest data, reports and studies highlighting that patient experiences and outcomes suffer from regional variations, and urgently need a national approach.
It has been a very busy year, but these are a few highlights…
In conjunction with AASC, a monthly virtual support group called CafeAASC was set up early in the project and has proved extremely successful.
We’ve welcomed the second Mesothelioma CNS to Wales, Sam Williams as an adopted post in recent months. We’ve also welcomed Kim Crossman who is compiling an all-Wales patient database and distributing information packs to all patients. On a policy level, we are working on numerous fronts to develop national guidelines, most notably: work with WHSCC on an application to incorporate mesothelioma as an NHS Wales specialist commissioned service; and working with the Welsh Cancer Network to develop a National Optimal Pathway for Mesothelioma.
There will be a Patient and Carer Day in April 2022 plus a professionals’ education event in 2022. We have also translated patient information resources into Welsh and a Welsh page is being developed for the Mesothelioma UK website to meet the specific needs of those in Wales.
There are further exciting developments in the pipeline for the project in Year 2, so watch this space!