Asbestos-Related Disease Support Groups: a survey of their organisational structures and activities Dr Helen Clayson MD, FRCP, FRCGP Chair/founder of CARDS (Cumbria Asbestos-Related Disease Support) Visiting Research Fellow, Centre for the Social History of Health and Healthcare, Glasgow & Dr Kate M Hill PhD, MSc Trustee, June Hancock Mesothelioma research Fund Visiting Senior Research Fellow, Leeds Institute of Health Sciences, Leeds Disclosure: The authors declare no conflicts of interest

Background Survey of groups in the Asbestos Victims Support Groups Forum UK (AVSG-UK) Forum: started in 2005, N England, umbrella body 16 independent, not-for-profit support organisations+ 4 research funding bodies or campaigning organisations. Activities: benefits/compensation advice, support, campaigning, fundraising Forum Constitution and Principles Survey sent to 16 Forum members: 10 responders, 3 of the 6 non-responders not primarily patient support organisations

Who started the AVSGs, why, when and where? Occupational health, health and safety organisations, trades unions, benefits advisors, victims of asbestos diseases, or, less frequently, bereaved relatives Awareness of injustice and suffering experienced by people injured by asbestos (mainly at work) Unmet needs for advice and support recognised by people involved with asbestos victims Public consultation in 1 case: request for expert information on illnesses, benefits and compensation, family support and education of healthcare professionals Most running 10+ years (6/12 – 20 years) Mainly in northern UK, in areas of high incidence of ARDs (asbestos use in heavy industry)

How are they organised? Funding: Donations from public, trades unions, several solicitors, grants from charitable trusts and local authority (n=1) Fundraising –huge variety of sponsored activities + events eg Action Mesothelioma Day and International Workers’ Memorial Day, educational events eg Asbestos and the Law conference Annual income: 5 larger groups £60k-100k+, 3 smaller groups £5k-30k (these 3 run by volunteers alone) Staffing: 5 larger groups employ 1.5 - 4 fte (mostly benefits advisors and some bereavement counsellors) 9/10 report increasing numbers using their services 3/10 indicate concerns re sustainability Services free of charge Referrals mainly via specialist nurses

What do AVSGs do? (n=10) Support people with asbestos-related diseases 10 provide advice & support re State Benefits (7 offer representation at benefit appeals tribunals) 10 offer advice re civil compensation claims 6 provide information about the illnesses (of these 6, 5 have specialist nurse available & 4 have a doctor available) 6 provide written information or refer to other providers eg Mesothelioma UK, Macmillan Cancer Relief, British Lung Foundation 6 hold monthly meetings for victims, others hold annual events Most hold open yearly educational/promotional meetings

Diagnoses of 2019 people supported by AVSGs in 2015 - NB UK mesothelioma ~ 2500 pa Plus 359 bereaved relatives

What do AVSGs do? 2. Support families of people affected by asbestos Most benefits and compensation advice is provided in people’s homes Most groups hold open educational meetings at least yearly 6 hold monthly meetings open to bereaved relatives Bereavement support offered by 7, 2 groups have trained bereavement counsellors, 5 refer to bereavement services Memorial services held by most, usually on Action Mesothelioma Day Formal impact assessment undertaken by 6 with very positive comments

What do AVSGs do? 3. Campaign via the Forum (‘one voice for asbestos victims’) eg: Mesothelioma Charter, Alimta (pemetrexed) Changes in law eg veterans’ compensation Research funding for mesothelioma Support other asbestos hazard campaigns eg for a global ban on production and use of asbestos, the Asbestos in Schools organisation

Challenges facing AVSGs The changing geographical and demographic distribution of asbestos-related diseases suggests a need for new models of service delivery across the UK Unmet support needs of people with asbestos-related lung, ovarian and laryngeal cancers raise questions around access and expertise All charities face reduction in volunteering and funding alongside reduced support from the state

Finally Around 40% of people suffering from mesothelioma in the UK each year are supported by the 10 AVSGs in this survey AVSGs contribute significantly to the supportive care of people with mesothelioma and their families There is great commitment evident in the knowledgeable and skilled AVSGs’ workforce, despite limited, and sometimes insecure, resources Varied activities and differing structures of Forum AVSGs have developed over time. This survey has commenced the building of a comprehensive database, useful for activity monitoring, promotion and also, potentially, to researchers Streamlining organisations, collaborative working and efficient use of technology should equip AVSGs to address the challenges ahead Thankyou to all those who participated in the survey Helen Clayson and Kate Hill, IMIG, Birmingham, 2nd May 2016