Engaging with decision makers

An important facet of the Older People’s Cancer Voices programme has been developing stories and resources, and identifying opportunities to support older people affected by cancer to talk to decision makers (commissioners, health and care professionals) about cancer advocacy.

This aspect of the Older People’s Cancer Voices programme has several aims:

  • To better understand the issues that are important to older people affected by cancer
  • To explore opportunities for older people to talk to decision makers about their experiences
  • To explore how their experiences could be used to influence change, support service delivery or encourage others
  • To develop a pool of resources, stories, films that advocacy projects can use to demonstrate the impact of cancer advocacy

Here we reflect on our experience delivering Older People’s Cancer Voices to help you think about some of the challenges and opportunities this type of engagement with older people can bring about.

KEY LESSONS

Being brave about telling stories

  • We were conscious of the potential for conflict of interest, this was most apparent when the older person affected by cancer had a negative experience that they felt they wanted to be heard. Again we tried to handle this sensitively, supporting them to explore ways to tell their story constructively.  If stories are to have a positive impact, shaping local services and pointing to potential for improvement then these stories about poor experiences need to be heard.  We worked with these volunteers to channel their poor experiences into constructive feedback, so that they were able to have their say and open up a conversation that drew a focus to how their experience could have been improved.
  • We couldn’t shy away from the realities of cancer for older people and so the stories we have supported older people to tell have included alcoholism, end of life, family estrangement, in depth discussions of treatment, a breadth and depth of issues older people tell us are important to them.  Some of the stories we explored were captured on film, others were shared verbally with health and care professionals.
  • In seeking to amplify the voices of older people affected by cancer and do justice to the great advocacy practice Cancer, Older People and Advocacy staff and volunteers deliver we felt Older People’s Cancer Voices had to be brave about telling stories.  We didn’t avoid difficult topics, working alongside older people to bring these issues to light sensitively. We ensured that the person telling their story considered the potential impact on their audience. It’s important that the person’s right to privacy is not impinged upon because we can see a good story in the making.  These privacy issues are discussed further in this blog post about a story teller who decided not to continue her participation in our filming project:

Initially when I asked ‘x’ if she would like to participate in the film she was excited at the prospect and consequently I arranged a meeting with Justin the film maker.

At the meeting we discussed various issues and ‘x’ was very open about her experiences and how I as an advocate aided her. Throughout the discussion ‘x’ was very complimentary of the advocacy service and it was only after the meeting that I was able to help ‘x’ recognise that the changes actually came and were directed from her and I was able to merely facilitate them. Ultimately after the group meeting when I spoke to ‘x’ there was a sense of genuine self-acknowledgement at how far she had come.

Unfortunately soon after ‘x’ decided that she did not want to participate in the film citing that she was not comfortable and that she recognised that her privacy was important.

The old ‘x’ would have been to uncomfortable and would have attempted to appease myself and Justin in fear not to offend or inconvenience anyone by going along , when deep down it’s not what she would have wanted.

Ironically it is just the fact that she was confident to say ‘no’ to the film that made me realise that as an advocate my job was somewhat complete as her privacy was a ‘boundary’ and the new ‘x’ confidently put it into place!

The interface between advocacy and storytelling

  • Handled sensitively participation in storytelling can bring a chance to reflect.  We should be sensitive to the wishes of participants, but not shy away from asking them if they still want to be involved. It’s more important that they feel empowered to say no, than it is for us to get what we need.
  • Empowering older people to tell their stories means being open to encouraging them to do so.  Sometimes this felt in conflict with the advocacy role.  We might back off from asking whether an older person still wants to participate if we know from the advocacy support we are offering that they are going through a difficult time.
  • One of our partner organisations received interesting feedback. A talk which older people affected by cancer felt had been poorly received actually had an impact on how the Clinical Commissioning Group who received the talk now work with patient experience visitors invited to share their experiences. This feedback showed that the talk did have an influence on local practice.
  • Sometimes we had feedback from older people that they felt decision makers were not interested or not listening to their experiences.  We made sure that this was fed back to those professionals, but whilst some older people continued to deliver sessions, others decided they no longer wanted to continue.
  • Participants also needed support to reflect on their involvement.  Positive feedback was received from many health and care professionals, and there were positive outcomes, including new referrals and in some cases volunteers being recruited following sessions where older people shared their stories.
  • Participants needed encouragement too when audiences were harder to engage.  The majority of talks that were delivered by older people affected by cancer were very well received, but there were some where time constraints placed on meetings meant that our volunteers had very short slots on an agenda, this felt rushed and was not a positive experience.  We provided reassurance to volunteers, acknowledging that was disappointing but not a reflection on them or the way they presented their experience.

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Providing sensitive support to storytellers

  • Some project partners had more success than others in recruiting older people to be ‘older people’s cancer voices’ (volunteers interested to work with decision makers).  During the course of engagement participants may fall ill again themselves, have to resume caring responsibilities, come up against memories that make it difficult for them to deal with.  All of this requires sensitive support.
  • Support is needed to draw a focus to a story for different audiences, and it’s important that the older person feels their whole story has been heard, even if the outputs focus on just one part of that experience
  • Sometimes this meant reaching a compromise.  In one of the case studies we developed, the storyteller had a negative experience of a service, this negative experience was very important to them and they wanted it to be heard.  The story was important, as was our partnership with the service.  We made sure that the storyteller was listened to and the story was told in context but the public telling of the story did not include the contentious issue.  We felt comfortable with this because we ensured that with the storyteller’s permission, the service was made aware and given the opportunity to explain or apologise. The storyteller was able to accept this compromise so that their story could be told.

Digital materials to support storytelling

  • We developed digital resources, films and images to support the development of presentations to decision makers.  We worked with a small development group of older people affected by cancer. They told us that they wanted to see images that were positive about ageing.

  • Traditionally we’ve used images of older people’s hands to convey advocacy partnerships or older people’s issues. They wanted us to develop resources that reflected older people like them coming together, portraits or action shots that depict the diversity of older people and their lives, with a good mix across age groups, including ‘younger old’ and ‘older old’ people.
  • We took many photographs during the lifetime of the Older People’s Cancer Voices programme. Advocacy stories were also complemented by images taken from free stock photography site “Unsplash”. OPAAL curates a small selection of these images here.

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