The film we are highlighting today from our Older People’s Cancer Voices project has a call to action for health and care professionals – your local Cancer, Older People and Advocacy project needs you to refer older people affected by cancer.
We wanted to use this film to highlight both the strong outcomes of independent advocacy support for older people affected by cancer, but also the benefits to health and care professionals, both in terms of cost effectiveness and saving time, but also in strengthening service provision and therefore improving experiences for older people affected by cancer.
Our programme steering groups, cancer champions and the health professionals that we have strong working relationships with tell us that trust is a key issue for professionals making referrals outside the boundaries of their own services. Having trust in that referral, knowing the organisation you are referring to is a high quality service and will deliver strong patient centred outcomes, these are understandable barriers to referring into an independent advocacy service if you haven’t experienced these services before. We hope this film brings to life for health professionals what they, and their patient or the carer they are supporting can expect from a professionally led volunteer peer advocacy service, supported by experiences of the health and care professionals who already do make referrals:
We hope this film leaves you wanting to start a conversation with your local Cancer, Older People and Advocacy partner project, see the About Us page for details, we’re back tomorrow with a film aimed at commissioners.
This question formed the basis of small group discussions at the recent Networking Forum for peer volunteers of Dorset Macmillan Advocacy at Help and Care. Our volunteers come together every other month to share experiences and learn from one another. In November there was a real buzz as our newly inducted team met our volunteers who have already had several partnerships. The groups formed for this particular discussion included a mix of experienced and rookie advocates so the question could be considered from a theoretical angle and looked at in practice.
There was enormous energy in the room and fierce engagement with this topic. Jo Lee, Macmillan Senior Advocate, invited feedback from the discussion and we captured many interesting points including those shown below. One volunteer commented afterwards that she felt that participants had been ‘courageous’.
‘A partner may have other issues such as social issues or co-morbidities which are of greater concern to them.’
‘By getting to know your partner you allow their priorites to become clear.’
‘Guard against saying “I know how you feel” – we all feel differently’
‘The practicalities of how we personally cope could be more relevant that how we ourselves feel or felt.’
‘It could help a partner to know that their peer volunteer advocate has come through difficult times.’
‘Create a safe space for your partner to think and speak in.’
We were very glad to be joined on the day by Rosie Young from Oxfordshire Advocacy (see Rosie’s recent post). Rosie stated how valuable she felt advocacy support had been for her and described her experience to us. Help and Care and Oxfordshire Advocacy are linked as part of the mentoring scheme for new delivery partners and Dorset Advocacy are similarly linked with AgeUK Bristol.
Rosie Young, Cancer Champion, Oxfordshire Advocacy, and Marion Summers, Peer Volunteer Advocate, Dorset Macmillan Advocacy
ICANN held a Flagship Event around Cancer and Older People, in conjunction with our AGM on the 1st October 2014, at St Cuthbert’s Church Hall, Fulwood, Preston.
The event was to promote our new Cancer Older People & Advocacy project. Invited guests included volunteers, cancer champions, service users and representatives from other local organisations.
ICANN AGM with Denise Partington CEO of ICANN, with Kevin Wright, Chair of Trustees
Our two guest speakers were Kath Curley from Beth Johnson Foundation and Paolo Dey from the Department of Health at the University of Central Lancashire. Kath talked about experiences and learning from being a Cancer, Older People and Advocacy pilot project partner, and how with the support of Macmillan Cancer Support, Beth Johnson Foundation had successfully extended the service to cover the county of Staffordshire. Paolo has a specialist interest in epidemiology relating to health inequalities and informed us about local statistics in relation to older people with cancer, and how this compared to national statistics along with those for other age groups.
Kath Curley
Local organisations including Age Concern, Alzheimers Society, Healthwatch, Help Direct, and Connect 4 Life, joined with Rosemere Cancer Information Centre, Vine House, our local Clinical Commissioning Groups and UCLAN in hosting display stands to raise awareness of their services. This provided lots of great networking opportunities for all participants and am sure will enable us to work better together in the future.
We concluded with a luscious cream tea, which was enjoyed by all our guests.
The OPAAL – Macmillan Cancer Support Partnership is thrilled to announce an additional investment of £1,000,000 by the Big Lottery’s Silver Dreams programme in Association with the Daily Mail to their Cancer Older People and Advocacy Programme – COPA.
During the last two years OPAAL and Macmillan Cancer Support have worked hard to make sure that over 170 older people are supported and enabled to exercise their rights, express their views, explore and make informed choices about their treatment and care.
The Flagship £1 million over the next three years will ensure we are able to extend our service to reach many more older people across England adding Bristol, Sandwell, Knowsley, Oxfordshire and Lancashire to pilot services in Sefton, Staffordshire and Dorset. Together over the next three years our new services will add over 300 new volunteers supporting over 1,000 older people affected by cancer to our national cancer support programme. So successful is our pilot three original partners secured three years continuation funding to expand their work in Dorset and Staffordshire.
This is a huge boost for OPAAL and we are deeply indebted to Macmillan Cancer Support who provided this funding as our new delivery partners will receive expert coaching and advice from these partners to get their new services off to a flying start. They will be the first to benefit from all the learning generated by our pilot.
Jagtar Dhanda, Head of Inclusion, Macmillan Cancer Support said: “We’re extremely proud of what this partnership has achieved. Securing this funding is a validation of how important this work is. This funding will ensure that the project goes from strength to strength, by reaching an even greater number of older people affected by cancer. It’s also a reflection of how partnerships can truly make a tangible difference.”
More than one in three of us will get cancer, and for most of us it will be the toughest fight we ever face. People living with cancer are starting down a journey into the unknown. Attempting to navigate a complex system whilst making speedy decisions about treatment choices and rights, the experience of accessing health and social care services can be confusing, isolating and frightening. Older patients and carers often experience a loss of choice and control.
Since July 2012 with the Silver Dreams Pilot fund and additional funds from Macmillan we supported over 170 older people affected by cancer across Dorset, Stoke on Trent, Gateshead and Southport. We recruited and trained older people who themselves have been touched by cancer, to provide advocacy support to their peers. Since then OPAAL and Macmillan Cancer Support have proved that for some older people, particularly those who have no one else to speak for them, having an advocate can be a real life-saver.
Consider the statements below from just a handful of those we’ve helped speaking about the volunteer advocates who supported them:-
Ron ‘I will not have to go to another appointment alone’
Alec ‘Janet and I are now making plans for when I’m gone’
David ‘I still don’t think I’d be here if I didn’t have your support’
Elaine ‘When you say you are going to be there for me I know you will be’
These people along with 173 other older people we’ve supported faced emotional trauma, anger, isolation, and the complete disorientation experienced by so many upon hearing a cancer diagnosis. They revealed real worries concerning caring responsibilities for loved ones, how to cope with the after effects of surgery, how to tell family members, find suitable accommodation, secure benefits, sort out debt, speak with health professionals to agree treatment and care and for the terminally ill how to plan for the end of life. These are just a handful of the issues faced by the older people we’ve helped.
Our deeply committed 62 Local and National Cancer Champions have done an amazing job promoting advocacy services and supporting our amazing 56 Volunteer Advocates. All advocates took time to build that all important trusting relationship enabling older people to confide worries and concerns. Our advocates, all of whom have experienced cancer themselves, understand the impact of a cancer diagnosis on the individual and are able to address worries and concerns with skill and sensitivity. We are indebted to them and the staff and champions who supported them.
Older Volunteer Advocates also gain a great deal from their advocacy work. They told us:-
“It’s working directly with older people affected by cancer that’s the best part of volunteering. I can see first-hand how cancer advocacy is improving the lives of individual older people affected by cancer who might otherwise not have been supported. It’s that which makes it all worthwhile.”
“As a volunteer advocate I was asked to be a cancer champion representative at national meetings alongside other project partners under the leadership of OPAAL. As well as opportunities to share good practice these meetings established the National Cancer Champions Board and agreed terms of reference, project plans and evaluation methodology and also supported applications to further develop and expand the cancer advocacy service. It’s great to think that I can feed in ideas and suggestions that directly influence national service delivery and I can take back ideas to consider locally.
I am thrilled that we are able to extend our work to more and more older people up and down the country. When older people hear of our services the first question is often ‘Why don’t we have an advocacy service like this?” now thanks to the Flagship Silver Dreams Fund and the continued support of Macmillan Cancer Support we can offer more older people the support and help they need.
We believe we have gone some way to proving that together we can support older people affected by cancer in real and meaningful ways to improve their understanding and management of the impact of cancer and also help them achieve lasting change and improvement in their every day lives.
That we have enjoyed this level of success is entirely down to the dedication and commitment of ALL our partners. We will continue to work with our eight strategic partners, six new Resource and Development Partners and our Local and National Cancer Champions. We will also create a new Health Professionals Board to help us work more closely with our health colleagues. Together we number 23 organisations plus many more represented on local and national cancer champions boards, over the next few weeks we will feature articles on the role of each of these partners supporting our project. I’d like to thank them all for their continued support, we simply would not be doing this work were it not for you.
On behalf of the Beth Johnson Foundation I would like to congratulate OPAAL on the Silver Dreams Flagship Application and wish you all the best for a successful outcome. The Beth Johnson Foundation has been one of the original pilot sites for the peer advocacy for older people affected by cancer project and we have enjoyed working with both OPAAL and Macmillan Cancer Support.
The pilot has been successful in North Staffordshire and Stoke on Trent supporting 35 clients over the last 12 months. We have learnt from the process and this has enabled us to be successful in securing funding to upscale the project to cover the whole of Staffordshire. The model used during the pilot will continue with invaluable support and local knowledge from our Local Cancer Champions Board.
The Foundation looks forward to being a strategic partner with OPAAL through the National Cancer Champions Board (NCCB) in the future.
Once again congratulations on the bid and best wishes for a successful outcome
Older People Living with Cancer 