Two self help and support groups recently invited me to talk to them about the advocacy support offered by the volunteers at Dorset Macmillan Advocacy. I described the origin of the service, how it operates and how to refer but the hardest thing to get across is what advocacy support actually is since it is tailored to the needs of the person affected by cancer or their carer. Reading out a case study of someone’s story is a good way to illustrate advocacy support in practice and soon there will be films that we can use as well. This time I asked the group members to reflect on their own cancer journey and to note down a feeling and a need. The Dorset group of Myeloma UK thought about the time around diagnosis and the HANDS cancer group considered the period during active treatment.
The main theme running through the feelings noted by both groups that we later shared was worry, fear and anxiety. Around the time of diagnosis most people felt shocked and fearful. During treatment people felt overwhelmed, confused and angry, uncertain about how long their treatment would go on and how long side effects would last.
The needs that people noted around diagnosis were a need for immediate reassurance, to hear about other patients’ experiences, information about the cancer that was comprehensible, information on sources of support, to know what would happen next. During treatment people identified emotional needs – company, someone to listen, someone to talk to who has been there, a hug – and practical needs such as transport options.
We then talked about how having a trusting relationship – or partnership as we call it – with a peer volunteer advocate who could listen with empathy, visit and speak on the phone, be objective and non judgemental, go with to appointments and find things out might help people in dealing with these issues. A few days later I read that an analysis by Macmillan Cancer Support of the most pressing concerns for people living with cancer listed worry, fear or anxiety as the most frequent.
People attending self help and support groups already understand the power of peer support and I see 1 – 1 advocacy support as being complementary to the support offered at groups. Some participants having understood advocacy support said that they wished it had been available to them, others said they could see the benefits but had themselves felt completely supported by their health care professionals and own social networks. Advocacy support is not for everyone and some said that they would not be comfortable opening up to someone they did not know, but we are glad to offer it as an option for older people and carers in Dorset.
Kathleen Gillett, Dorset Macmillan Advocacy