About the UK Mesothelioma Alliance (UKMA)

The UK Mesothelioma Alliance (UKMA) was established in 2017 to bring together mesothelioma stakeholders as one voice to raise awareness of mesothelioma through agreed projects.

In the UK about 2,500 people per year are diagnosed with mesothelioma. It is also known as ‘diffuse’ or ‘malignant’ mesothelioma. Mesothelioma is a form of cancer that affects the mesothelium.

The mesothelium is a thin membrane that lines the inner surface of:

  1. The chest wall, where it is known as the pleura
  2. The abdomen where it is known as the peritoneum
  3. The testicles

The mesothelium also surrounds organs within these cavities for example the heart, lungs and intestines. It is far more common to have mesothelioma in the chest than in the abdomen. There is approximately 1 case of peritoneal mesothelioma to every 12 cases of pleural mesothelioma. Mesothelioma is more common in men than in women and nearly half of the people diagnosed with the disease are over 75 years old. (Source: https://www.mesothelioma.uk.com/what-is-mesothelioma/)

 

Illustrations courtesy of Mesothelioma UK

Exposure to asbestos is responsible for up to 9 out of 10 mesothelioma cases. There are thought to be other rare causes of the disease but none are fully understood at this time. The disease has been described in medical literature since 1870 although the first suspicion linking asbestos and mesothelioma did not appear in the UK until 1935 and a definite link was not reported until 1960. (Source: https://www.mesothelioma.uk.com/risks-and-causes/)

Membership and Meetings

Membership of the UKMA is open to all non-commercial mesothelioma stakeholders including but not limited to mesothelioma patient/carer advocates and campaigners; mesothelioma charities; asbestos support groups; asbestos campaigners and trade unions. Other organisations may be co-opted onto the UKMA from time to time e.g. for the duration of an asbestos-related campaign.

Anyone wishing to become of a member of the UKMA can send a formal request via the UKMA Chair using the email adddress info@UKMesoAlliance.org. Members will meet 4 times/year – 2 in person and 2 by teleconference.

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UK Mesothelioma Alliance Terms of Reference

Key Beliefs and Objectives

The UK Mesothelioma Alliance believes that:

  • Equitable access to treatment and care wherever patients are in the UK is crucial to improve outcomes
  • Raising awareness of mesothelioma and the dangers of asbestos is vital to both increase early diagnosis and reduce exposure to asbestos

 

Terms of Funding

The UKMA has agreed that initial funding for agreed projects and first actions will be provided by charitable funds.

These include donations from members of the UKMA and from external charitable trusts. Ongoing funding considerations will be discussed and agreed as required to ensure that the UKMA always remains impartial.

Any funding received will be ring-fenced in a separate budget line held by Mesothelioma UK on behalf of the UKMA.

The UKMA are grateful to the following who have provided funding:

£10,000 HASAG

£5,000   June Hancock Mesothelioma Research Fund

£10,000 Mesothelioma UK

£10,000 The John Pickering Trust (provided a grant to help fund the service specification project)

The British Thoracic Oncology Group (BTOG) provided support in kind from 2017 to 2023 in the form of Dawn Mckinley, BTOG Senior Executive Officer’s time to chair UKMA and Gina Stevens, BTOG Executive Officer’s time to provide the secretariat for the UKMA.