We are collecting advocacy stories as part of the national project and hope to hear from both volunteer advocates and advocacy partners about the difference our work has made to them. I visited one of our advocacy partners to chat about what would be involved in sharing his story and to preview the questions that I would be asking him at our next meeting. After the questions which asked for some detail on his own particular situation and how he had experienced the advocacy support came a question about the ‘wider impact’ that he considered his involvement with our project to have had.
I said it was not important if he felt at this time that there had not been any wider impact. He responded that he was very keen to contribute to the work that we are doing and he knew already what impact he would like to have. He would like people affected by cancer to have support already from the time of investigations and tests throughout the process of diagnosis.
Having been referred by his GP and seen a specialist he had gone alone to hospital to have some tests. The health professional had displayed the result on a screen, pointed out in a very matter of fact way a large tumour, and said he would be making a referral back to the specialist. The ensuing weeks of waiting for the next appointment were for that patient ‘a void’. He felt strongly that people should not have to face that void which, for him, was a time of great worry despite having family support. Sources of support should have been suggested ahead of time and the uncertainty which defined that period, which he finds it difficult to look back on, could have been alleviated by advocacy support.
As a result of this advocacy partner’s cancer journey his life has completely changed. When the story is told there will be more lessons to be learned but until then we will share his experience of the ‘void’ and seek ways to raise awareness of the benefits of advocacy support at the very start of the journey.
Kathleen Gillett, Dorset Cancer Advocacy
Older People Living with Cancer 
November 30, 2013 at 7:04 pm
I recognise that ‘void’. I recognise the uncertainty. I am curious as to how advocacy would alleviate either the void or uncertainty – it is the nature of having such diagnosis no matter how many people are around you. What evidence do you have that the advocate makes a difference?
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December 6, 2013 at 12:05 pm
We hope to gather this evidence in the next year. To date we have not had any referrals during investigations either from patients or from health professionals however members of a support group and attendees at Macmillan Cancer Voices conference told us that they would have welcomed having someone with them at diagnosis. One person that we are supporting said that he tried to find someone to go with him to the appointment where he received his diagnosis. He asked several local organisations before he remembered the support that our organisation had given his mother some years ago. We were able to start supporting him from shortly after his diagnosis and matched him with a volunteer advocate living with the same cancer while he was making treatment decisions. He said ‘I am so glad I have found you. I was feeling very vulnerable but now I feel I can take this on knowing there is a nucleus of support there for me’.
I have described before how independent advocacy can be a preventative service. I feel that having an advocate at a time of great uncertainty pre diagnosis would alleviate some worry and be empowering as the advocate can say ‘If cancer is diagnosed I will be here to help you understand the implications, find the information you need, make treatment decisions that you are comfortable with and ensure that your voice is heard.’ From the very start a patient who has an advocate can plan for whatever the future may hold thus reducing anxiety and the possibility of crises for themselves, the people who care for them or for the people they care for.
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