Since 2012 we’ve been delivering a Cancer, Older people and Advocacy programme in partnership with Macmillan Cancer Support. We recruit and train people aged over 50 affected by cancer to become peer advocates, supporting their peers to express their views and wishes, access and retain important information to make informed choices and provide flexible support to return voice, choice and control
What We Did
Since 2012 we’ve been delivering a Cancer, Older people and Advocacy programme in partnership with Macmillan Cancer Support. We recruit and train people aged over 50 affected by cancer to become peer advocates, supporting their peers to express their views and wishes, access and retain important information to make informed choices and provide flexible support to return voice, choice and control.
Since April 2012 in 11 areas in England and one in Wales we have trained 265 Volunteer Advocates who have supported 1827 older people affected by cancer.
The people we support present with a range of issues which include loneliness and isolation, caring for someone else in their life whilst facing their own cancer diagnosis, fear in the face of the transitions that occur and decisions to be made in later life, deterioration in mental health and the capacity to make choices relating to their health. It is estimated that around half of people living with cancer have one or more moderate or severe unmet needs (such as mental health issues) six months after their treatment ends (Independent Cancer Taskforce 2015a). We provide flexible support that extends after treatment ends, providing practical and emotional support to face these transitions.
We’ve motivated staff and volunteers by publishing their advocacy stories and featuring them in our films, promoting the service, sharing their learning and thanking them for their involvement (http://opaal.org.uk/app/uploads/2017/02/Time-our-gift-to-you.pdf
Earlier this year we developed our impact practice working alongside Macmillan with Patient Powered Medicine, and EY to explore social and financial return on investment for the COPA programme. Using OPAAL data EY’s SROI analysis of COPA shows that for every £1 invested, between £6.20 and £8.60 is returned to the public purse. In addition to this qualitative evidence base we amplify the voices of older people affected by cancer using storytelling approaches.
In our latest film Mike talks about the difference advocacy made to him – Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer. He describes feeling terrified and disillusioned, sometimes suicidal. His peer advocate volunteer Bob was someone he could talk to, someone who really knew cancer, Mike says he feels it is essential “to talk to someone who has had similar experiences”. Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis. (https://www.youtube.com/watch?v=l2KPasvjbiI)
Wider Active Support
We have three types of partners on our COPA programme:
1) our funding partners are Macmillan Cancer Support and The Big Lottery
2) COPA has 12 partners delivering cancer advocacy services across 11 areas of England and 1 in Wales. OPAAL leads COPA supporting partners by- co-producing Quality Standards, policies and strategies; developing a cancer advocacy framework, a continuous improvement national database, and training, publications, films and conference presentation and exhibition materials.
3) Our strategic partners: COPA also works with national partners who bring in expertise we do not have in house, including Huddle Digital, Opening Doors London, LGBT Foundation, Helen Sanderson Associates, EY (formerly Ernst & Young) and Patient Powered Medicine of Cambridge University. Such partners support us to reach a wider range of older people, tell their stories and evidence the social return on investment (SROI) of the COPA programme.
OPAAL recognise that those who use a service are the best placed to design it, and older people affected by cancer are involved at every level from service design, to delivery and evaluation.
Each service has set up a Local Cancer Champions Board comprising of older people affected by cancer, health/care professionals and service delivery staff; the assets of all members are valued; these boards harness the energy of their participants in shaping services, solving problems and agreeing how resources are used to best meet the needs of older people affected by cancer. These Boards send representatives to the National Cancer Champions Board so older people affected by cancer are directly co-producing at national level.
This programme of work aims to improve the experiences of older people affected by cancer by acknowledging and supporting the expertise of peer advocates and by working with older people as individuals, respecting individual needs, preferences and values. This makes COPA services more responsive to the needs of older people affected by cancer. Older people tell us that they value highly the knowledge, experience and empathy peer advocates bring to their support.
As well as being equal partners in service design and delivery, older people have been encouraged to take over some of the development work being done by practitioners. The project is evolving and reflexive in reflecting on the skills and assets older people bring to the table. In 2014 OPAAL achieved the SANOFI Gold Patient Award and used this award to develop a train the trainer programme. Recognising that older people affected by cancer are best placed to share their experiences and influence practitioners to make referrals to COPA projects, this work supports older people to explore their skills and experiences and develop a programme for delivering COPA training to health/care professionals.
Older people affected by cancer have been involved as co-researchers in research programmes with Birmingham and Manchester Universities.
Volunteers have been supported to explore different ways to tell their stories, building their confidence by first delivering training alongside OPAAL, then delivering independently.
Finally, the programme strives to give frontline staff alongside older people a greater role in the planning of services. OPAAL engaged Helen Sanderson Associates in their Working Together for Change programme, this work involves careful listening and understanding of people’s experiences, exploring what’s working and what’s not for older people and co-designing creative solutions to meet these needs.
OPAAL is a learning organisation and as such the programme continues to explore approaches to co-production to support older people affected by cancer to have a positive experience of peer advocacy.
Looking Back/Challenges Faced
Our pilot evaluation identified issues around the buy-in of health professionals, we found that there was a reluctance to refer into advocacy services, we needed to explore this reluctance further to understand how to build the trust and confidence of health and care professionals. We learned that we needed to develop a clear message about advocacy that educates as well as informs target audiences about how it works.
We have overcome these challenges by:
Setting up a National Health Professionals Board with a remit to improve links to and referrals from health professionals.
Giving talks to clinical nurse specialists, building a knowledge base including stories, films and presentations to raise awareness
Inviting them to sit on our local cancer champion’s and national cancer champion’s Boards
Developing tools to make the process of referring easier for example we developed referral pads for ease of referring
Training older people affected by cancer to share their stories with decision makers, building their confidence to develop talks and build new relationships
Our project plan is supported by a carefully developed advocacy costing model and advocacy framework, and welcome pack for new project partners – we invest time in reviewing plans, responding to change where appropriate and seizing opportunities to work with new partners and grow our work. These resources are an investment for the advocacy sector, shared with our members so that new services can come on stream. We work with a group of research and development partners who have expressed an interest in developing their own cancer advocacy services, our investment in developing resources alongside these partners ensures that knowledge is developed alongside and stays within the sector.
We’re using our robust evidence base to start a different conversation with funders and stakeholders, one which starts with the financial returns and evidenced impact. We’re investigating funding to further upscale our cancer, older people and advocacy programme, before now we had a strong feeling that advocacy produced robust returns on investment, we can now put a figure to that. International interest is evidenced by our hosting of a group of 25 academics from Egypt in April keen to learn how we support older people in the UK. We aim to use this opportunity to expand our partnerships overseas.
Evaluation (Peer or Academic)
We’ve invested heavily in evaluating our work, with impact data being analysed in 2016/17 by Manchester University, TwoCan, Brap and EY (with Patient Powered Medicine).
We have case work data relating to over 1,600 advocacy cases which we’ve used to develop intelligence relating to good practice and demonstrate the effectiveness of advocacy interventions, evidence our members can use as leverage to support the sustainability of advocacy services for older people.
We’ve quantitative evidence of advocacy’s SROI – a £6 to £8 benefit on every £1 invested in advocacy and evidence that advocacy provides strong social impact, meets complex needs and covers a wide ranging patient challenges.
The COPA Management Board identified 16 specific outcomes/targets for older people:
1. Understand and access treatment.
2. Understand and access care services.
3. Improved financial situation.
4. Improved knowledge and understanding.
5. Reduced isolation.
6. Expressed End of Life wishes.
7. Maintaining dignity and respect.
8. Involved in decision-making.
9. Those around me are better able to cope.
10. I am able to contribute more to my local community.
11. Improved health and emotional wellbeing.
12. Improved quality of life.
13. Reduced dependence on health services.
14. Increased access to other support.
15. Increased confidence.
16. Increased/regained/maintained independence.
The five outcome areas where the greatest improvements in outcome scores were seen in a pilot review from one of our project partners (evaluation of 60 cases) show that older people 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
We built on this learning by exploring outcomes in relation to our more complex cases with Patient Powered Medicine (Cambridge University) and EY, demonstrating that advocacy support returns to older people affected by cancer their voice, choice and control. Our latest storytelling work goes further to demonstrate how advocacy makes a difference, in our most recent film Mike describes how advocacy saved his life, previously we would not have had the confidence to say advocacy saves lives because we didn’t have this evidence; we’re building on these stories developing press releases and using them to strengthen policy development work we engage in. A recent evaluation found that “overall, the evaluation identified many examples of outcomes and positive benefits achieved through the COPA programme for both advocacy partners (those who access advocacy) and health and social care systems. In some cases, advocates supporting people to increase their voice, choice and control helped in achieving other outcomes (such as health outcomes or improved emotional wellbeing).”
The programme also yields benefits to the wider health and care system, Using OPAAL data EY’s SROI analysis of COPA shows that for every £1 invested, between £6.20 and £8.60 is returned. Evaluation of the COPA programme by Brap presents evidence that advocacy highlights wider system failures, we are thus exploring potential to extend our evidence to work more closely with policy makers,
As a membership organisation we are committed to sharing our findings to build capacity in the advocacy sector, we:
• Developed a national advocacy management database and use this to gather data on advocacy services
• We share anonymised data with strategic partners to evidence service impact
• Circulate a bi-monthly bulletin that includes learning from our programmes
• Contribute to NICE Quality Standards consultations using material from members
• Use training events and a number of professional networks to receive and disseminate information e.g. CHAIN, AGENDA, National Voices, Independent Age, AAA, SCIE, CQC, SIAA, NCVO, Common Ground
• Are the advocacy sector leader in use of social media having engaged with 1200+ local organisations and 1000 + via social media; published over 450 blog posts; and are finalists in UK Blog Awards 2017 under the Health & Care category
• Publish books, films evaluation and other reports involving service users and health professionals;
• Use national conferences, recently delivering presentations to: Big Lottery, Macmillan, UKONS, Primary Care, Compassionate Care, National Advocacy Conferences, BGS, Kings College. From March 2017 we will speak at AAA, Kings College, Healthcare Scotland, Macmillan and the BGS conferences.
• Use our web site, e.g. recently responding to an enquiry from Cairo to host 25 people now visiting us in April to learn how we care for older people in the UK.
• Have been involved in the 2016 Apeldoorn conference in Holland and hope to do the same in 2017
Is there any other information you would like to add?
Links to our films and publications:
Our blog, finalist in the National Blog Awards (to be announced Spring 2017) www.opaalcopa.org.uk
Evidence of positive practice in:
OPAAL works to broaden understanding that the benefit of advocacy is in viewing the health system from the older person’s perspective. Together we experience the whole system, all of the transitions of ageing, from diagnosis, treatment, to end of life and the wide range of issues outside of health that ultimately impact on health. We work with the most overlooked older people, those least likely to have a say in service development. Recent evaluation of our COPA work found evidence that “advocacy had helped in responding to some of the known causes of health inequality, particularly symptom awareness/reporting and inequalities in service provision/access to treatment.”
Diversity and Equality:
We expand our work in under-developed areas leading the advocacy sector to develop diverse services. Our CEO attended the first event on needs of transgender people affected by cancer in Manchester and was able to successfully network with prospective new partners. Our Board supported work we have done with AWOC on ageing without children issues. We continue to explore best practice in reaching BAME communities. Our development group is currently co-designing a set of promotional materials featuring BAME, older LGBT people, and also ‘younger’ older people as the group felt they were underrepresented in our materials.
As outlined above, we bring health care professionals together with older people affected by cancer through our local and national cancer champion boards
Innovation is at the heart of the COPA programme working with peer volunteers, allowing us to provide a flexible, high impact service to older people affected by cancer at a low cost. This innovation extends to the way we work with volunteers, we invest in them, supporting them to set up local cancer champion boards so that they are directly involved in influencing decision makers and shaping local services for their peers. We won a Sanofi Gold Award for innovation in our patient engagement work in 2014.
Staff Leadership/staff wellbeing/experience
We’ve invested in staff and volunteers, bringing them together under the Working Together for Change programme; this work involves careful listening and understanding of people’s experiences, bringing together staff and volunteers, exploring what’s working and what’s not for older people affected by cancer and co-designing creative solutions to meet these needs. We’ve motivated staff and volunteers by publishing their advocacy stories and featuring them in our films, promoting the service, sharing their learning and thanking them for their involvement.
We’ve shown a commitment to enterprise in building on the success of our COPA pilot, scaling up to work with 12 project partners and a wide range of strategic partners who are supporting our impact practice. With the Board’s backing our CEO secured an additional £120,000 investment by Macmillan to resource our impact programme, working with EY to produce a SROI model for advocacy. We invested in a costing model for the advocacy sector, to support the development of responsive, accurately and fairly costed funding applications. Partnerships yield support in kind i.e. free meeting rooms in London, free/low cost training.
Outlined in detail above
Patient Safety and patient outcomes, improving access:
Brap’s evaluation of our COPA programme found that advocacy highlights wider system failures in responding to inequalities. Recent evaluation of our COPA work found evidence that “advocacy had helped in responding to some of the known causes of health inequality, particularly symptom awareness/reporting and inequalities in service provision/access to treatment.”