Ours is the story of an unexpected conversation with incredible results; 30 minutes that led to the largest ever grant investment in advocacy services in England, a partnership that is changing lives for older people affected by cancer, and trailblazing advocacy service delivery in new areas of the health and care sector.
We’re the Older People’s Advocacy Alliance (OPAAL), the only national organisation supporting independent advocacy services for older people. Independent advocacy is an often misunderstood and undervalued but vital support service. It’s also a neglected area for funding, and older people are losing out because of this.
Statutory advocacy services aren’t especially well funded, but there’s a perception that because statutory advocacy, the bare minimum, is being commissioned, the vital community advocacy that supports older people in all aspects of their daily lives is a 'nice to have'. Additional factors of isolation, multiple comorbidities and marginalisation means that the people who need advocacy the most are those least likely to get it.
An unexpected conversation back in 2011 led to OPAAL taking up the challenge to help older people affected by cancer to achieve better outcomes for their treatment and care. As well as opening up advocacy services to this new group of beneficiaries, this presented an opportunity to put advocacy in the spotlight within clinical settings; increasing health professionals’ exposure to advocacy and improving their understanding of its outcomes for patients and carers.
That conversation, between OPAAL’s CEO Kath Parson and a Macmillan Officer, went something like this:
Macmillan officer: Do you think independent advocacy could help older people with cancer achieve better outcomes for treatment and care? Kath Parson: Without a doubt, this is an area we’ve a lot of experience in, what it is you’d like to achieve? MO: We’ve just had a report on cancer inequalities, “Walking Into the Unknown”, which tells us older people seem to get a raw deal when it comes to their experience of cancer and we’d like to change that KP: OK I think we could help you, how about older people who have been affected by cancer themselves supporting their peers? MO: Great let’s set up a meeting to discuss this further with my team.
This short meeting was the catalyst to OPAAL upscaling its operations, building up from a pilot to working with project partners in ten areas of England and one in Wales.
Today OPAAL delivers a Cancer, Older People and Advocacy programme worth £3 million, including a £1 million investment from the Big Lottery, the largest grant investment ever made in advocacy in England, and is looking to expand into Scotland and Wales.
In short, our small five-staff strong organisation is leading a Flagship programme funded by Macmillan and the Big Lottery, and since 2012 has provided advocacy support to 1,600 older people affected by cancer through 200 volunteer peer advocates, helping people aged 50+ to deal with 3,258 different issues.
Peer advocates walk side by side, every step of the way, providing whatever support the older person needs, from emotional support, support to understand information and make informed choices, support with housing, benefits, social care, treatment needs, to planning for end of life. They aim to be the ‘voice’ of the older person, are non-judgemental and make sure those they support are heard and their views and opinions are acted upon. Our unexpected conversation means that health professionals are having better informed conversations with older people about their health, care and other needs related to cancer diagnosis; and older people report feeling less isolated, better supported, and better able to make choices about their future care and support needs.
And more unexpected conversations have sprung from here. OPAAL are working with a growing team of strategic partners including academics, health and care professionals, LGBT organisations, survivorship networks and other new networks to help make sure advocacy is better understood. We have learned that even a small organisation can punch above its weight using social media, which provides opportunities to talk directly to decision makers and influencers; more conversations leading to new opportunities to support and develop the advocacy sector.
When you watch our new films featuring older people talking about the relationship they’ve built up with their advocates you see the unexpected conversations we’re supporting that arise from a cancer diagnosis, and the difference advocacy makes, giving older people and voice, choice and control.
What a journey we’ve been on since that short conversation opened the door to these new opportunities!
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