With a limited number of volunteer advocates available the length of time that they can support any one individual inevitably has to be limited. At the same time we wish to support people for as long as they need support but will also aim to refer them on to other local services such as befriending if and when appropriate.
One particular challenge for advocates in a partnership lasting a relatively short time is how to assist with advance care planning. Advocates are skilled at building the deep level of trust needed but they must follow their partner’s lead. Jo Lee, Senior Macmillan Advocate who has joined the team here at Help and Care described advance care planning as a Pandora’s Box that some people may fear to open. We would hope that once advance care planning is embarked upon with the support of an advocate then the fear would be much less. We are planning in depth training for our volunteer advocates on these issues in the coming year.
Unlike cancer, dementia is always progressive but, like cancer, people can live well with the condition for many years. The recent evaluation of a post-diagnostic support project for people with dementia in Scotland by the University of Stirling and Bournemouth University Dementia Institute commented on the difficulty in supporting people with advance care planning. Some people ‘just did not want to think ahead’ which underlines ‘the highly sensitive nature of the topic…and the lengthy timescales require to support people to think ahead, if they do actually wish to.’ People get used to the idea of having a particular illness or condition at different rates and that affects their ability to move forward on their journey. The same report notes ‘reluctance in thinking too far ahead while still adapting to the diagnosis’ and emphasises ‘the importance of recognising that decisions on difficult topics, particularly advance care planning, will take time and of allowing people to arrive at their own position in their own time.’
Advocacy support helps people in different ways at different times on their cancer journey. Some people contact us for support around the time of diagnosis or for help in coming to terms with a change in their situation. They may then say that they wish to end their partnership as they aren’t yet ready to think about advance care planning. They know that they can contact us again in their own time.