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Asbestos- related disease support groups: a survey of their organisational structures and activities. July 2016

Objectives

Mesothelioma is a devastating disease that has a high emotional impact on patients, their families and carers. Patient organisations play an important role in the supportive care of patients with asbestos-related diseases (ARDs), especially those with mesothelioma. The psychosocial sequelae and complex benefit and compensation claims associated with mesothelioma have resulted in a need that is not met by standard health and social care services. The Asbestos Victims Support Groups (AVSGs) were founded in response to this unmet need. Members of the AVSG UK Forum adhere to a set of principles that includes specifying the nature of relationships with lawyers.

The aim of this study was (1) to provide a comprehensive picture of the way Forum AVSGs are set-up, their day-to-day organisation and operational activity and (2) to develop a survey instrument that could be used to monitor and support group development and impact in the future.

Methods

A survey form, developed by the authors in collaboration with the ASVG UK Forum, was distributed by email in December 2015 to all 20 Forum support groups . Nine responses (45%) have been received to date. The survey remains open until 31 January 2016 and it is predicted that the response rate will rise when reminders are sent out in mid-January.

Results

The 9 groups were located in areas traditionally associated with high industrial use of asbestos. They were set up between 5 and 20 years ago (5-10 years: n=3, >10 years: n=5, 20 years: n=1) by independent health and safety organisations (n=2), trades unions (n=2) or relatives (n=3), occupational health (n=1) and in one case a doctor, in response to unmet needs of people with ARDs particularly mesothelioma. All the groups provided expert advice and practical assistance with State benefits, usually in people’s homes and by telephone, sometimes on group premises and occasionally by email. All supplied details of expert solicitors. Four held regular meetings for people with ARDs at which benefits advisors, specialist nurses and sometimes solicitors were present, 3 offered medical information and 4 offered bereavement support. Six held annual educational meetings open to patients, healthcare professionals and lawyers. Three groups expressed concerns around sustainability due to insecure funding.

In 2015 these 9 groups supported 2460 people including 963 with mesothelioma, 242 with asbestos-related lung cancer, 451 with asbestosis and 359 bereaved relatives.

Conclusions

Forum AVSGs provide essential psychosocial and practical support for a large number of people affected by ARDs, particularly in offering expert assistance.