Tony Walter drew two circles to demonstrate how a person with cancer is simultaneously at the centre of a team of health, social care and voluntary sector professionals – the multidisciplinary team (MDT) and at the centre of their own ‘natural support network’ comprising their family members, friends, neighbours, work colleagues, congregation and wider acquaintances. While I felt comfortable as a paid charity worker sitting in the MDT circle I felt that a volunteer advocate is different.
Tony Walter is Director of the Centre for Death and Society at the University of Bath and he was speaking at the annual conference organised by Lewis Manning Hospice in Poole. Tony explained that there is not yet enough research into the support available to family carers from naturally existing networks as opposed to the support from health and social services. He described some projects around the world which seek to mobilise communities or to mobilise a person’s natural networks.
In an ideal world, Tony concluded, natural support networks are strong and people need medical expertise not holistic care from an MDT. However, Tony argued somewhat controversially to my mind, palliative care programmes that continue to expand holistic care of patient and carer without also helping to mobilise natural support networks risk further professionalising dying and disempowering communities’ own capacities to provide support.
Volunteer advocates work to the brief of their advocacy partner but they do inevitably come into contact with members of their partners informal network. Should the advocacy partner wish to explore how to talk to family or other network members about their illness and the support that they would like from them then a volunteer advocate can do this with them. In this way the volunteer can help a person to mobilise their own network. Advocacy support is also available to the carers and family members of a person with a diagnosis who are also ‘affected by cancer’. Needless to say our advocates are also frequently called upon to help people get a grip on who is who within their MDT.
Our volunteer advocates considered where they felt themselves to fit in the scheme of two circles. Owing to the voluntary nature of their work and the type of trusting relationship that they can build with their advocacy partner they seem to fit in the ‘natural support’ circle even though they come from a project operating in the other circle! Some felt the circles should overlap creating a Venn diagram with a section just for volunteers and others felt they should be free floating satellites.
It was immediately obvious that volunteer advocates could be instrumental in helping to meet one of the challenges which Tony identified, that is; how to integrate natural and professional support networks. In the meantime Dorset Macmillan Advocacy is contributing to the work of Dorset Compassionate Communities and planning for Dying Matters week in May.