What information and support needs matter most to people affected by cancer? Today Kathleen Gillett of Dorset Macmillan Advocacy, (DMA) tells us about changing needs and a greater requirement for emotional support:
Cancer Information and Support Services (CISS) are changing – at least that is the finding of a recent study of the Macmillan CISS which has involved a partnership with the Mental Health Foundation. A workshop at last autumn’s Macmillan Professionals Conference presented the findings of research into the role of provision of information and support. Macmillan CISS services are very varied with some operated by teams of staff and volunteers in large purpose built facilities, often on hospital sites, and others provided by a single part time worker.
The trend has been for people affected by cancer to be less in need of information and more in need of emotional support. A YouGov survey found that 83% of patients said that ‘being listened to’ is the most important thing. If people are seeking more emotional support how are the CISS services reflecting this change and how are the service providers (staff and volunteers) themselves enabled to give this support without a negative impact on themselves? Answers to these points continue to be developed by a working group of Information Managers within Macmillan.
Discussions during the workshop revealed a range of interpretations as to what constitutes emotional support and how to offer it. A weekly coffee morning style drop in could offer low level psychological support in the view of one participant from a community palliative care team. Ensuring that ‘all the patients have my phone number’ was seen by a nurse as being a way of providing emotional support. Another participant noted that patients with identified needs may sometimes decline a referral to psychological support because of unfamiliarity with the term and fear of the word ‘psychological’.
I made sure to explain to the participants of my discussion group the way in which peer volunteer advocacy can provide low level and ongoing emotional support. Not only can advocacy partners ventilate on occasion and be sure of being listened to but they can build a trusting relationship over time with their volunteer and know that they will not be judged as they share their worries and feelings.
Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy