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
Engaging with health services and establishing advocacy on the cancer pathway
Traditionally advocacy services have interacted with the social care sector, so delivering cancer advocacy into health settings was a new experience for most of our Cancer, Older People and Advocacy (COPA) partner projects.
This paper sets out 5 key lessons from Older People’s Cancer Voices project partners in engaging with health services, and seeking to establish a place for advocacy on the cancer pathway.
1) Establishing a Local Cancer Champions Board can be a springboard for building local influence
Each of our COPA partner organisations convenes a Local Cancer Champions Board (LCCB) which helps to steer local project development. LCCBs are made up of a wide range of people, including but not limited to local volunteer co-ordinators, representatives from Macmillan, representatives from the health sector, academia, peer cancer support advocates, carers, older people affected by cancer and local authority professionals.
We asked project partners about the impact LCCBs are having in building local relationships; whether this equates to having greater local influence. Generally they present a similar picture; in summary LCCB members are opening doors for project partners locally but membership of LCCBs is developing and changing all the time and there is an issue about local (mostly primary) healthcare professionals not being able to commit the time to attend.
I-CANN found that they started off with a really strong membership, this was built up organically with I-CANN writing a brief terms of reference for the LCCB, and then providing their LCCB Chair with a list of potential contacts to approach to join the Board. Partner projects agreed that LCCBs are a good mechanism for consultation with older people affected by cancer, and this is positive in ensuring older people’s voices are heard in service design. What seems to be working well is ad hoc relationship building and door opening. In Dorset one LCCB member provided “a vital link to local GPs and has supported the group with practical initiatives such as writing to medical colleagues and making introductions to the CCG lead for cancer.”
Another member “has offered invaluable input around service development and most recently, in exploring future funding options. She has been instrumental in arranging a Bitesize education event for local Macmillan professionals (including many clinical nurse specialists (CNSs), where the advocacy service enjoyed a prime presentation slot.”
2) Building relationships with Health and Care Professionals is resource and time intensive
Project partners have been trying lots of different approaches to build relationships with local health and care professionals with varying degrees of success. All project partners have reported that they are finding it difficult to engage with local GPs and primary care staff, despite support from their LCCBs, and all report that it takes a tremendous amount of time and resource to build relationships, there’s widespread agreement though that time spent building these relationships is essential.
One project partner said “we are really struggling to engage with health professionals, approaches have been tried through practice managers, and with CNSs, via lead CNSs and also presenting at CNS team meetings, none of this has resulted in any referrals.” As one project partner said: “our challenge seems to be showing where our support for an older person affected by cancer will align with a Health Professional’s job description
This sense of alignment is reflected by another project partner in terms of health professionals making links for themselves about situations when an advocacy referral might be appropriate: “individual hospital departments within oncology appear to value our service more, but some of this has been via evidence of benefit seen by working with existing clients, which has led to further referrals, but only where there are similar circumstances. For example early on we received a referral from our local Cancer Information Centre for a client with throat cancer who also had a learning disability, the upper gastro-intestinal department themselves have since sent us 3 further clients, who have also had a learning disability or mental health issues”.
Furthermore the ‘shifting sands’ of the environment partners now operate in means that service reviews, service restructures and changes in personnel all impact on partners’ ability to create meaningful relationships that result in referrals.
Naturally some partners have questioned whether resources might be shifted from relationship building with health and care professionals, particularly where they have stronger relationships with local voluntary and community sector groups which yield referrals; however on reflection they would still like to build on referrals from health and care professionals with a view to raising the profile of advocacy support within clinical settings. OPAAL created a Health Engagement Strategy to support COPA partners to develop their own local engagement plans.
What has worked well has been intensive interaction with health professionals. We’ve had very positive feedback on the talks that older people affected by cancer have given to professionals, both locally and nationally. This has yielded new referrals, and also new project volunteers; when Dorset Macmillan Advocacy volunteers delivered a talk to Macmillan’s helpline and support teams in January 2017 we saw an 84% increase in referrals on the previous year from these teams (Jan – March 2017 comparing with Jan – March 2016) with the helpline team lead reporting that “teams have been exploring the advocacy that is available in their local areas”.
Feeding back on his experience of delivering these talks one volunteer told us that these talks have indeed led to interest in the service, and to new referrals, and a really unexpected outcome has been “health professionals themselves hearing about the service and deciding to volunteer with us”, testament to the power of advocacy stories then, health care professionals hearing about the service and wanting to give their time to get involved too.
A presentation by Help & Care’s OPCV volunteers to the Lead Cancer Nurse meeting at one hospital resulted in referrals and the recruitment of a retiring CNS to the volunteer team. CNSs asked questions about the training and support given to volunteer advocates. Afterwards a breast nurse commented ‘we feel so much more confident referring to your service now we have met some of the volunteer advocates’.
We see strong potential too for developing influence where health professionals tell their peers about advocacy services. Indeed, having people with a health background involved in service delivery seems to have an impact on referrals from health settings. Our partner project, Beth Johnson Foundation (BJF) has staff from a health background, although levels of investment in COPA projects vary widely, it is significant that BJF had 80 referrals from health professionals in a 12 month period, against a total of 79 across all other COPA partners in the same period.
3) The commissioning environment is changing and opportunities to develop relationships with commissioners are shrinking
Some COPA projects enjoy strong links with health and social care commissioners by virtue of them being well established generic advocacy organisations. Across the four Older People’s Cancer Voices projects it’s fair to say that in relation to exploring commissioning arrangements for COPA, there’s a strong feeling that despite shifting sands, we are a step ahead of the commissioning environment in delivering person-centred and cost effective support.
As the OPCV project has developed we’ve explored different pathways, including how the integration of health and social care might influence the direction we try to take with this, although we’ve made strong progress establishing advocacy on the cancer pathway, funding has not yet followed. Partners have recently been exploring potential for advocacy within Sustainability and Transformation Plans but there is widespread agreement that older people, and/or cancer are a very small part of the plans, and budgets are reducing, so it will be further challenging to secure interest. Furthermore, we see potential for future influencing opportunities with the new Cancer Alliances rolled out from September 2016, but these have been slow to get off the ground in local areas:
“The size and shape of these Alliances are still being determined in conjunction with local teams, but will follow natural patient flows in cancer services. They will be crucial in driving change for clinical quality and outcomes at appropriate population levels for cancer pathways, and will be able to provide cancer specific leadership for the new Sustainability and Transformation Plan (STP) footprints.” (National Cancer Strategy, 2016)
On not having secured continuation funding for COPA, project partner I-CANN reflected “the new (Macmillan funded) cancer pathway service are very upset that we will no longer be delivering COPA, as they saw us as an integral part of their service, and that we could work in partnership to give more extensive support to a small number of individuals that they identified, however the CCG are unable to commit funding to allow us to continue the service.”
We have however seen some direct commissioning of services. Dorset Macmillan Advocacy (DMA) have been working with Royal Bournemouth Hospital (RBH) since November 2016 to pilot the use of advocacy for people who are undergoing diagnostic tests for lung, colorectal and urological cancers; the Dorset Appointment Advocacy Service.
Royal Bournemouth Hospital themselves are part of a national pilot that is looking to reduce timescales for diagnosis across these three cancer streams and approached DMA following receipt of a proposal to provide advocacy on the lung cancer pathway, to provide independent advocacy for those people who might like support to navigate the diagnostic processes and ensure their voice is heard within it. RBH have confirmed their funding of staff hours on this pilot until April 2017, but are currently considering the possibility of extending and widening the pilot beyond this. DMA hope to demonstrate the value of advocacy for the people they support who are undergoing diagnostic procedures, as well as demonstrating the benefits of advocacy to health care professionals.
4) There’s added value to outreach and building local connections so older people’s voices are heard
The OPCV project explored whether there were lessons to be learned from making and building on relationships with local Healthwatch, or from engaging with local health and wellbeing boards. Generally project partners reported enjoying good relationships with local Healthwatch, but these relationships did not yield the strategic influence we hoped for. In terms of the interactions project partner have had with local health structures, there has been a strong feeling that the health environment has been in a state of flux over the lifetime of this project, and so, like relationships with health professionals, good working relationships have been enjoyed, but these have proved difficult to sustain.
The OPCV programme has very much sought to amplify the voices of older people affected by cancer into health and care settings and so has had a strong focus on valuing older people as local assets and exploring how local communities can work together to promote COPA, share information and create stronger local networks for older people. To this end we have explored asset based community development approaches to giving older people a stronger voice, and generally projects have had strong community based relationships within their own local networks including local councils for voluntary services or similar local infrastructure bodies.
One project, the Beth Johnson Foundation used their annual conference to explore Cancer and Hidden Groups, theming their conference around how cancer is experienced by people with learning disabilities, LGBT, prisoners, and the homeless with a view to reaching out to provide advocacy support to these groups. One of our filming participants requested a DVD so he could share his filmed story with his local Church at Christmas, which resulted in a donation being made to the project, an example of older people being empowered to have their stories heard, making a contribution to their communities too.
5) There’s real potential for establishing advocacy on the cancer pathway, this system change takes time to embed
Where local cancer pathways are being developed partners are working to find a place for their advocacy services within service development. Sometimes this is about looking at the whole cancer pathway; as one partner explains “there is a much greater emphasis in both health and social care on ‘supported self-management’ which is illustrated by the Wessex Strategic Cancer Network’s ‘Rehabilitation, Reablement & Recovery Quality Guidance’ document that provides guidance and advice to commissioners for future services and should illustrate the need to commission services that can support an adult when recovery and rehabilitation may falter”. BRAP’s evaluation (forthcoming) of the wider COPA programme indicated that “at a national level, there are opportunities to argue that advocacy should be better integrated at key points of the care pathway. The case could usefully be made with both Cancer Alliances but also the National Cancer Vanguard which is currently piloting whole pathway approaches to commissioning and provision.”
Some COPA partners have had success in working on parts of the local cancer pathway, as this casestudy from Sandwell COPA project shows:
“The prescription Pads were introduced as part of our strategy of establishing referral pathways with professionals. During our initial meetings with health professionals a common theme that emerged was that they are so pushed for time that was a challenge for them to have to complete lengthy referral forms or take 20-30 minutes getting hold of someone on the phone and having to deal with the whole referral process with regard to passing on all relevant details that we might require. As part of our on-going discussions we identified that health professionals would be incentivised to refer into the project if the referral process could be made as simple and least time consuming as possible.
This went hand in hand with a range of other measures to encourage them to refer into the project such as raising awareness of what we do and developing their trust in our service to refer their patients as part of a broader referral pathway strategy. To this end we worked in collaboration with some health professionals, taking into account what would be the minimal amount of information we would require, and hence the Referral Prescription Pads were introduced.
We ensured that all relevant health professionals were given pads which could be easily carried with them and completed as they identified potential referrals. The pads included our fax number (as well as other contact details) to make the process as convenient for them as possible.
One of the other areas identified regarding reluctance to refer into other services by health professionals was that they told us that their referrals were rarely acknowledged and/or they were never informed as to whether the referral had been accepted, we adopted both procedures as part of our standard referral process.
Since we implemented use of our Referral Pads 28% of our referrals have been made on the Prescription Pads, predominantly from the CNSs.”
And we’ve made headway in working with health professionals to understand how advocacy can complement their role, as this clip also shows:
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
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.
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