Mesothelioma

in Wales

Wales is one of three devolved nations in the UK. Setting health policy for NHS Wales and the funding for health services is the responsibility of the Senedd, in Cardiff. Wales has seven NHS Health Boards which plan, secure and deliver all healthcare services within a set geographical area.

Wales is a predominantly rural, mountainous, and coastal nation, which means patients in Wales can face difficulties accessing services due to:

  • Long distances to travel
  • Limited access to public and private transport
  • Lack of local specialist services
  • Difficulties recruiting specialist staff

Wales has a proud cultural and historical Celtic identity. Equity for patients further includes legally protected access to bilingual Welsh/English information. The Welsh Language Act 1993 is an Act of the Parliament of the UK which puts the Welsh language on an equal footing with the English language in Wales.

Approximately 100 people are diagnosed with mesothelioma each year in Wales, with 95% of those being malignant pleural mesothelioma (MPM) managed via 10 local lung multi-disciplinary teams (MDTs).¹ The numbers discussed in local lung MDTs each year is fewer than 8 in 60% of MDTs², with only one MDT² satisfying the BTS threshold of greater than 25 cases per year to maintain expertise and competence in the diagnosis and treatment of MPM.³

As a rare cancer in a devolved nation, Mesothelioma patients face significant inequity. Mesothelioma patients in Wales are not protected by national safeguards seen in NHS England and NHS Scotland, such as: Service Specifications; Quality Performance Indicators (QPIs); and a National Optimal Pathway (NOP). Patient outcomes vary by health board, including: three-month survivorship from 65% to 90%; one-year survivorship from 31% to 49%; and active treatment from 27% to 71%, with some health boards performing poorly in all reported categories.²

Sarah Morgan has been the sole Mesothelioma UK representative in Wales since April 2017, based in West Wales.

 

¹ Cancer Incidence in Wales, 2002-2019. Welsh Cancer Intelligence and Surveillance unit (WCISU). Published 15 June 2022

² National Mesothelioma Audit report 2020. Audit period 2016–18, NLCA@rcplondon.ac.uk. Published May 2020

³ BTS Guideline for the Investigation and Management of Pleural Mesothelioma 2018. http://brit-thoracic.org.uk/ Published March 2018

Ambition

Project Cymru

In September 2020, Mesothelioma UK Project Cymru was launched, led by Sarah Morgan, Senior Mesothelioma Clinical Nurse Specialist and Project Lead for Wales.

The guiding aim of the project is to ensure all patients in Wales receive the standards of care outlined by the British Thoracic Society and UK Mesothelioma Alliance, including:

  • Discussion by a specialist mesothelioma MDT
  • Access to a named specialist mesothelioma CNS
  • Access to the best advice, treatment and care, including the latest clinical trials

To achieve this, the project introduced Mesothelioma Network Cymru: a specialist national ‘hub-and-spoke’ network of mesothelioma services and specialists, designed to support patients and professionals across Wales.

CaféAASC

Patient Support in Wales

A regular support group for Wales, CaféAASC, was established in November 2020 in collaboration with Asbestos Awareness and Support Cymru (AASC). These meetings have been held monthly via Zoom, with face-to-face quarterly meetings being reintroduced in 2023.

Mesothelioma UK and AASC work in partnership across many patient and carer events held regularly throughout the year and across Wales, including annual events for Global Asbestos Awareness week, Action Mesothelioma Day, International Women’s Day, St David’s Day and December Festive Lunch.

For further information about upcoming events, please visit the AASC website www.a-a-s-c.org.uk/

Education

Inaugural Professional Education Event 2023

In October 2023, we hosted the first Mesothelioma Network Cymru educational event for professionals in Wales.

The day highlighted the challenges we face and celebrated the achievements we are making, towards ensuring equity of access to the best care, support, treatments and trials for all those affected by mesothelioma in Wales.

Presentation topics included palliative and supportive care, updates on immunotherapy and radiotherapy as well as the Scottish Network experience.

Report

Mesothelioma Project Cymru

2020-2023

Project Cymru has now completed its third year, led by Sarah Morgan, Mesothelioma UK Senior Clinical Nurse Specialist (MCNS) and Project Lead for Wales.

The Mesothelioma Project Cymru 2020-2023 report discusses what has been achieved over these past three years.

Highlights include:

  • Audits carried out to better understand the needs of those using the service and how best to meet them
  • Patient stories, feedback and case studies, helping to illustrate the lived experience of the people affected by mesothelioma in Wales
  • New weekly national Mesothelioma Multi-Disciplinary Team (MDT) meetings ensuring new cases are discussed with appropriate specialists
  • Progress to date on the creation of NHS Wales mesothelioma guidelines to create national standards of care that all mesothelioma patients can expect
  • Plans to expand the network of MCNSs, with the first MCNS due in post in December 2023

There is still much work to be done, but Mesothelioma Network Cymru has been firmly established and is looking confidently to the future.

Get in touch

 

If you have any questions about accessing care in Wales, or wish to discuss any aspect of your mesothelioma with a nurse, please call our Freephone Support Line on 0800 169 2409 or email support@mesothelioma.uk.com  

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