Older People’s Cancer Voices
OPAAL’s Department of Health funded Older People’s Cancer Voices (OPCV) project runs alongside our Cancer, Older People and Advocacy (COPA) programme.
We are working alongside 4 project partners, Beth Johnson Foundation, I-CANN, Dorset Advocacy and Help & Care, to try to build relationships between advocacy organisations and local health and care professionals and commissioners.
This is about amplifying the voices of older people affected by cancer into health and care settings; OPCV is all about “making the advocacy for older people affected by cancer that we are passionate about really sing!”
These influencing resources have been developed in partnership with our four project partners, and co-produced alongside older people. Our aim is to give COPA partners and the wider advocacy sector the ideas and tools to:
- increase health and care professionals’ and commissioners’ understanding of advocacy
- increase referral numbers
- increase numbers of peer advocate volunteers and
- support the longer term sustainability of COPA
Supporting older people to engage with decision makers
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.
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.
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.
My Cancer Advocacy Story Films
Older People’s Cancer Voices project is about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision. These films help you to show advocacy in action, to help your stakeholders understand how it works, the benefits of advocacy and the outcomes it achieves for older people affected by cancer.
You can see more stories and films from year one of OPCV on our Youtube Channel
Outcomes for older people affected by cancer
An introduction to Cancer, Older People and Advocacy Outcomes
This introduction to cancer advocacy outcomes sets out some of the challenges we have found in defining and capturing outcomes from our Cancer, Older People and Advocacy programme. It is intended to get services thinking about the ways in which they can meet these challenges, sharing learning from one of our partner projects, I-CANN, who have undertaken a research project exploring COPA outcome data collection.
As indicated in OPAAL’s Cancer, Older People and Advocacy’s Quality Standards an effective service has effective monitoring and evaluation processes in place and reports on key outcomes for clients. The Standards set out that a quality COPA service:
“Has effective monitoring and evaluation processes in place, using nationally agreed templates to gather information. These monitoring and evaluation processes provide feedback from clients to help inform the following:
- The level of satisfaction with the service they have received, whether or not they would recommend the service to others
- How far their desired outcomes, expressed at the start of the advocacy relationship, have been met
- If the service has enhanced their ability to speak up for themselves”
This standard is met when:
- Feedback is gathered regularly from clients in the most appropriate way for the individuals involved
- Information on feedback forms is routinely analysed in order to assess client satisfaction
- Changes to service delivery are made that reflect feedback and the use of identified best practice
- Areas where clients are dissatisfied are appropriately addressed with the individual in compliance with organisational policies and procedures
- Outcomes achieved are identified, recorded electronically and analysed
- Feedback information is shared with OPAAL and COPA partners so that best practice can be shared and success celebrated
Defining outcomes for Cancer, Older People and Advocacy services
These quality standards hint that advocacy outcomes can be multifaceted. They can be specific to the individual, for example how far the individual’s goals set out at the start of the advocacy intervention have been met.
They can be about the many benefits that can come from accessing an advocacy service, for example the individual feeling more able to speak up for themselves, or feeling less isolated. They can be about changes to service delivery, both in terms of reflecting changes to the advocacy service as a result of client feedback, or about changes to local statutory service delivery/design where advocacy services identify issues within health/care or wider service delivery which could be improved, changed or challenged.
In defining COPA outcomes we tried to define outcomes that are user focussed, but projects are not limited to these measures, we encouraged project partners to track individual outcome measures that are personal to the advocacy partner, and to capture service satisfaction feedback, and casestudy evidence both of which complement this outcome data.
COPA programme outcomes
As a programme we have drawn up the following outcome measures to support the delivery of quality cancer, older people and advocacy services. These are captured on our programme database, SAM, when the advocacy case is closed, and are measured with a simple ‘yes’, ‘no’ or ‘partially achieved’.
Although this scoring system may mean that we find we do not get as much granularity to our data, the advantage of this simple system is that it makes it easier to be consistently applied across advocacy partner projects. Also advocacy partners are not asked to ‘grade’ the improvement or reduction across each outcome domain, something we know people who access advocacy services can struggle with, and it can be difficult to track across multiple partner projects who might present outcomes to clients in different ways.
Many of the outcome measures we have selected are aligned to Macmillan’s Nine Outcomes, the things that matter most to people affected by cancer, the Macmillan outcomes they link to are shown in brackets beside outcome measures:
- Increased/regained/maintained independence
- Increased confidence
- Increased access to support (Macmillan outcome: I know what I can do to help myself and who else can help me)
- Reduced dependence on health services (Macmillan outcome: I know what I can do to help myself/who else can help)
- Improved quality of life
- Improved health and emotional wellbeing
- I am able to contribute more to my local community (Macmillan outcome: I feel part of my community, I am inspired to give something back)
- Those around me are better able to cope (Macmillan outcome: those around me are well supported)
- Involved in decision-making (Macmillan outcome: I understand so I make good decisions)
- Been treated with dignity and respect (Macmillan outcome: I am treated with dignity and respect)
- Expressed End of Life wishes (Macmillan outcome: I want to die well)
- Reduced isolation (Macmillan outcome: I know what I can do to help myself and who else can help me)
- Improve knowledge and understanding (Macmillan outcome: I understand so I make good decisions)
- Improved financial situation
- Understand and access care services (Macmillan outcome: I get the treatment/care that are best for my cancer and my life)
- Understand and access treatment (Macmillan outcome: I get the treatment and care that are best for my cancer and my life)
Cancer, Older People and Advocacy services are in the main delivered by peer advocates, supporting older people affected by cancer. This cohort comes with its own specific issues which can have an impact on outcome monitoring. We are not saying that these issues are exclusive to older people affected by cancer, but they are relevant to this programme. These issues can include the advocacy partner finding their cancer journey so challenging that they find it difficult to identify the outcomes they wish to achieve, or they find it hard to say what the advocate has done for them at the end of the intervention. In some cases the advocacy partner becomes unwell and the advocacy service feels it inappropriate to follow up on outcomes, or the advocacy partner dies during the advocacy intervention, here services wrestle with issues including whether to follow up with family/carers.
I-CANN are continuing to explore these issues, and one avenue they are exploring is whether it would be appropriate to consider advocacy outcomes, as reported by the advocate, or even from the viewpoint of the advocate. This could be very useful where project partners are unable to elicit the client’s viewpoint for example when their work with an individual has ended at their death. This could also add to the picture if the older person struggles to say what benefit the advocacy intervention has had.
What older people affected by cancer say about COPA support
Soundbytes and qualitative feedback from clients complement outcome monitoring and help partner projects understand what older people affected by cancer value about the service. I-CANN recorded comments from service users, this feedback further highlights some of the complexities of seeking feedback on outcomes of a service, including service users who do not always remember what support they have received, and those who engage with the service for only a short while. This type of feedback can help a service demonstrate its value to funders, complementing outcomes data, and can also help to build a strong picture about why it is not always possible to capture outcomes data for all clients:
- Advocacy helped me and my partner sort our life out both emotionally and financially. We now feel able to face whatever we need to
- We only really spoke over the phone, as my husband died shortly after, so I did not continue with the advocacy service, but I found it very useful to have a listening voice
- I can’t really remember exactly what help I was given!
- It was ok using advocacy for someone to talk to, but I can manage on my own
Conclusion: an early view of advocacy outcomes for COPA
Though I-CANN found it proved quite difficult to get client feedback from COPA clients they reflect that it has been a worthwhile learning exercise. I-CANN’s outcome report concludes that advocacy support has a much wider impact than just health and social care; COPA referrals have been related to finances, benefits, accommodation, practical aids social isolation and many other non-clinical areas. Positive outcomes have been achieved for older people affected by cancer and the outcomes achieved well demonstrate that the service is providing quality advocacy support which is commensurate with the general principles of advocacy. The five outcome areas where the greatest improvements in outcome scores were seen were:
- Better able to understand and access care services
- Less isolated, better relationships
- General improved knowledge and understanding
- Better able to understand and access treatment
- Maintaining dignity and respect
These five domains, when looked at alongside comments and feedback from users of the service start to build a strong picture of the impact of independent advocacy on the lives of older people affected by cancer.
 For this pilot study I-CANN considered all clients who they and KPAIS (Knowsley Pensioners Advocacy & Information Service) worked with from commencement of service, (August 2014 for I-CANN -July 2014 for KPAIS) and whose cases had closed prior to 1 November 2015.
Defining advocacy cases as complex
This discussion paper sets out the wide range of issues that might give rise to an advocacy case being defined as a ‘complex case’ drawing on academic research, advocacy casework in action and a recent training pack commissioned by OPAAL from Dorset Advocacy (2016) on complex cases.
Some of the issues discussed here pertain particularly to cancer advocacy service delivery, though many apply to generic older people’s advocacy too. This discussion paper is intended to help you think about the range in the complexity of advocacy cases you support people with, as we’ve found this can help with making the case for cancer advocacy, and can help in identifying advocacy cases that make persuasive casestudies, which we later used in the COPA programme as the basis of social return on investment analysis.
Cases with more than one issue
Currently OPAAL are defining as ‘complex’ cases where there are three or more issues, and partners are reporting that complex cases are on the rise.
In cases where there are multiple issues it can be a key function of the advocacy partnership to spend time supporting the advocacy partner to explore these issues with a view to trying to prioritise them.
June (68 years old) has been supported by peer advocate Michael with six advocacy issues 1) support to access information, 2) isolation, 3) liaison with health professionals, 4) emotional support 5) housing and 6) benefits
Cases with problems and dilemmas (can also be cases that draw on a lot of advocacy time)
Donnison (2009) talks about advocacy dilemmas and suggests this advocacy casework might best be defined as advocacy ‘on the hoof’ – where the advocate must pick a path through dilemmas requiring them to pay close attention to advocacy principles.
Donnison (2009) includes in this definition of dilemmas working with clients who present with challenging behaviours, clients who make a big call on the advocate’s time, cases where there is a conflict of interest, and cases where the casework involves wishes around euthanasia and/or complex end of life issues. OPAAL would add to this list of topics casework involving support to make unwise decisions, safeguarding vulnerable adults, treatment decisions, casework involving court processes and supporting clients with grief and loss.
Some of these cases can also be cases that take a long time or require more resource by virtue of the complex statutory systems they are engaged with, for example cases involving court processes or cases where the advocate is challenging statutory decisions on behalf of and/or with their advocacy partner.
Supporting advocacy partners with high support needs
Cases might be defined as complex when the person needs a lot of support. This might be because they don’t communicate with words or they might have significant barriers to communication. This could include people whose first language is not English, people who have learning disabilities, cognitive, physical and sensory impairment, people with autism or mental health needs, or those with fluctuating capacity. This could also include people with hidden disabilities, who can need more support to access services and experience barriers to accessing information and support.
Advocacy support might be needed to access materials in other formats, to explore options using talking mats, to explain treatment options in easy read formats and to challenge practice where professionals are not investing time to fully involve the person in their care and support.
People who are hard to engage, who disengage
Sometimes cases can present as complex because there are barriers to engaging advocacy partners or difficulties achieving what the individual hopes for. It’s not uncommon for advocates to work with older people who are hard to engage or who have disengaged and might need support to re-engage.
This can include working with older people who have a chaotic lifestyle so here we might be working with someone who is affected by cancer and is also having issues maintaining a tenancy, addiction, severe mental health issues, who may be living on the fringes, homeless or who can’t access support due to aggressive behaviour.
There can be issues affecting engagement including institutional barriers, attitudes of professionals towards advocacy, conflicts within the family, possibility of coercion by family or others.
Isolation can impact on engagement with services. As well as the challenges that social isolation presents in accessing services, physical isolation can prevent engagement. So too can being in a caring role and not having access to respite or other support services to enable the carer to be able to fully engage with advocacy support.
As was discussed recently by COPA members, the advocate often goes the ‘extra mile’ to maintain engagement, something other services don’t tend to do. This can mean anything from providing transport to hospital appointments, to supporting the person to re-engage with services that they have been declined access to because of frequent missed appointments or aggressive behaviour.
Donnison D. (2009) Speaking to Power (Bristol: Policy Press)
Dorset Advocacy (2016) Complex Cases Training (commissioned by OPAAL UK, delivered to COPA partner projects Feb 2016)
What older people told us about their experience of cancer
Between June 2015 and February 2016 OPAAL trained ten older people affected by cancer to share their cancer experience with health and care professionals with the aim of raising awareness of the advocacy role and the benefits to older people affected by cancer.
We learned that the trainer role is a special role, we recruited older people affected by cancer with the confidence to tell their story to health and care professionals and with the skills to condense their own story and be able to adapt this to different audiences.
We delivered an intensive one day training programme followed up with support to develop their stories and we worked alongside project partners to identify appropriate audiences for sessions. We found that trainers felt more confident to deliver sessions when they were buddied up together to deliver their stories in pairs, offering each other peer support.
During the lifetime of our Older People’s Cancer Voices programme we’ve built on this and have been having conversations with older people affected by cancer, gathering their stories and amplifying the issues that they tell us are important to them, their words are a powerful insight into the impact of cancer on older people’s lives.
“You know what, the doctors and nurses that cared for me were brilliant, but talking to other patients I was one of the lucky ones, I had a family and a support network around me, an understanding employer, so many people don’t have that and I want to help make doctors aware that they don’t always have the full picture maybe, who is at home with your patient? So if they live alone is anyone going to call this person after treatment, just to see how they’re coping? I can’t imagine going through cancer alone, I find it difficult to think about…”
“Our normal lives stopped at the point he was diagnosed as having cancer, our hopes and dreams had to be put on hold”
“Appointments with doctors become something you look forward to, isn’t that funny? It’s the days where you’re waiting, nothing is happening, you’re on the “watch and wait” that you really hit rock bottom, because there’s no progression, only you trying to live your life, which is quite different to the life we lived before cancer”
“Reading was a dangerous thing for me, I read all of this information about cancer, I couldn’t work in those first few months so I made researching my diagnosis and prognosis my new full time job, it was lonely, I missed the workplace. Perhaps if I’d had someone who’d been through it to talk to I might have taken a different path, I became very depressed and anxious instead. That said, I didn’t reach out for help because I thought I could handle it on my own”
“Living with cancer can be lonely…yes, peer support is essential even when family and friends are at hand, they needed me to be strong when I didn’t always feel like it…there were things I wanted to say, to ask, and I held back.”
“The diagnosis was such a shock to me but then it started to sink in, my husband couldn’t deal with it, he didn’t have the words or know how to react and by the time I was ready to face it, to be there for him, he was really very low”
“I wish advocacy had been available at that time, they could have supported me a lot… I didn’t always feel I was making an informed choice, even just a bit of support during appointments would have helped me take it all in”
“I’m a few years down the road now, what did someone say earlier? A Survivor? I can’t agree with your there, you can move on but you never forget, I always feel I’m looking over my shoulder, will it come back? But now I am better equipped I suppose and sadly as I’m growing older more and more of my friends seem to be affected to, I feel useful I suppose, being able to help them make sense of it all”
“My role as an advocate is very small, I’m not doing very much at all, but it’s a privilege to be accepted into someone’s life, for them to accept you when they’re at their most vulnerable takes a lot of courage, it’s a true partnership”
“I think the message for health professionals has to be “you have nothing to lose from referring to advocacy but your patient has everything to gain””
Finally, you can read our latest collection of stories, featuring peer advocates talking about their experience, Time: Our Gift to YouTrain the trainer key issues handout
The best way to share an advocacy story is to show it. We developed a wide range of resources alongside our Older People’s Cancer Voices trainers, designed to be used in reports, presentations and on social media.
Download a set of backgrounds for your own use, and our train the trainer pack to help you to support older people to tell their own stories to decision makersImages and training materials