This is the blog of the Cancer, Older People and Advocacy programme. Advocacy is all about Voice, Choice and Control and our programme is about putting that into practice.
We began our innovative project in July 2012 recruiting older people affected by cancer then training and supporting them to advocate for their peers. Between July 2012 and March 2014 we trained 56 peer advocates who in turn provided independent advocacy support to 174 older people affected by cancer. We also recruited 62 older people affected by cancer as National and Local Cancer Champions, these people are now very influential helping us shape and guide our project. On 25th March 2014 we published our first book ‘Every Step of the Way“: 13 stories illustrating the difference independent advocacy support makes to older people affected by cancer. Click here to find out how to download or order your FREE copy.
From May 1st 2014thanks to continuing support from BIG Lottery Fund and Macmillan Cancer Support, the project expanded to include 9 delivery partners across England and for the first time 1 in Wales.
You can learn more about our work by following this blog, just add your email address in the Follow box on the right hand side of this page. We update the blog regularly with news and stories covering cancer, older people and advocacy. Find out more by reading below…
Following our Silver Dreams Flagship award from BIG Lottery and additional funding support from Macmillan Cancer Supportour newly expanded project gets under way officially from tomorrow.
In this video Kath Parson, Chief Executive of OPAAL, talks about the launch of our Flagship project. A number of new delivery and strategic partners will be joining partners from the original pilot project to expand our support for older people affected by cancer to a number of new locations. We’ll give more details on partners from tomorrow.
Someone to rely on- Dorset Cancer Advocacy offering support to older people with cancer
Dorset Cancer Advocacy is an innovative service that offers support and information to older people with cancer.
Marion, Nina’s advocate
Here Nina, 69, a Bournemouth widow who has been battling breast cancer, explains how it helped her cope
“Before my diagnosis I was enjoying retirement and keeping active by walking and cycling, I had never felt so well. I was diagnosed with breast cancer following a routine scan and have undergone nearly a year of treatment since then, including two courses of chemo-therapy, surgery and radiotherapy.
I feel lucky that the cancer was found, but when they say cancer it knocks you flying. I’ve told some of my friends just the details that I want them to know, I don’t want to burden them.
I was taking part in a clinical trial during my chemotherapy course. The Research Nurse suggested I try the Dorset Macmillan Advocacy service as it offers home visits.
MAMOGRAM: Screening is to be extended in older women
The service co-ordinator came to meet me at home and then supported me for a short time, including with hospital appoint-ments, before introducing my volunteer advocate Marion Summers to me.
I could share my feelings about the cancer and what has happened to me with the co-ordinator and Marion. I knew they were there to support me. The effects of the chemo-therapy meant I would forget what people said; I felt turned inside out. Other side effects meant that I stopped driving and lost the confidence to use the bus and to go out.
Marion took written notes at hospital appointments for me to refer to afterwards. When I was offered surgery I felt stunned; I wasn’t sure how I would manage at home alone afterwards.
Before my operation Marion gave me information on getting extra help at home and meal deliveries, in case I needed it after my operation, and she also looked into local health walks.
After my operation Marion called to see how I was and find out when I would be going home.
I felt more confident with someone behind me. I was quite afraid of one particular health professional and, when we went in for the appointment, Marion said ‘We’ll do it together’ which helped a lot. I feel listened to.
Now I am getting out more, driving my car again and using the bus for local trips.
It is good to have someone else to rely on when you are alone. After my operation Marion said ‘We’ll be there for you’. It gives you a warm feeling someone saying that.”
One in three are over 70
There are around 1.3 million older people (65+) living with cancer in the UK One in three cases of breast cancer – and more than half of deaths – are in women who are aged 70 or older. Despite this, the age group is not routinely screened, although the cut-off age for screening is to be extended to 73 by 2016. One study has found that elderly women are being denied life-saving breast cancer surgery routinely given to younger patients.
You can read Nina’s story and Marion’s take on advocacy support in Every Step of the Way, our new publication.
Following our successful funding application to BIG Lottery’s Silver Dreams Flagship Fund we recently held a celebration event to look back at the many achievements of the pilot project and to launch the newly expanded Cancer, Older People and Advocacy project which will kick off in earnest on 1st May.
At the event hosted by Macmillan Cancer Support, Jagtar Dhanda, Head of Patient Experience at Macmillan, explained why our project is so important for older people affected by cancer. Find out what Jagtar had to say by watching the short video clip below.
Recently we launched Every Step of the Wayour new publication with 13 stories about the benefits of independent advocacy as told by older people affected by cancer. Funded by our partners Macmillan Cancer Support, you can find out more about it by watching this short video clip of Kath at the launch event.
You can download a copy of Every Step of the Wayhere
“Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer is now available to download.
Funded by our partner Macmillan Cancer Support, Every Step of the Way features the stories of 13 older people who have been supported by their peer advocates along the cancer journey. The stories are moving and help explain the significant difference being supported by someone close to you in age and experience, who themselves have been touched by cancer, make to everyday life.
Every Step of the Way is FREE as we wish to expand awareness of our work supporting older people affected by cancer. A pdf copy is available to download here but if you would like a hard copy you can order it via Macmillan Cancer Support by clicking here, registering and completing the order form
Tuesday 25th March sees the launch of our new project publication “Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer.
Funded by our partner Macmillan Cancer Support, Every Step of the Way features the stories of 13 older people who have been supported by their peer advocates along the cancer journey. The stories are moving and help explain the significant difference being supported by someone close to you in age and experience, who themselves have been touched by cancer, make to everyday life.
Every Step of the Way is FREE as we wish to expand awareness of our work supporting older people affected by cancer. From 25th March a pdf copy will be available via this blog site but if you would like a hard copy please send £5 to cover administration, postage and packaging to OPAAL (UK), c/o 14 The Green, Handsacre, Rugeley, Staffs, WS15 4DP. Cheques should be made payable to OPAAL (UK)
Join today’s live Guardian discussion on the financial cost of cancer.
Today from 12 Noon until 2 pm the Guardian are hosting a live online discussion with a panel of experts in the field and cancer survivors to discuss how patients can manage with what is sometimes a reduced income and higher expenses.
Cancer leaves in its wake not only a host of physical side-effects, but also potentially crippling financial costs.
Four in five cancer patients are hit with an average cost of £570 a month as a result of their illness, according to research by Macmillan Cancer Support.
Why is cancer so expensive? People living with cancer often have reduced earnings and need to find money to cover extra costs such as hospital travel costs and increased fuel bills, amid a gloomy economic climate.
One in three lose on average £860 a month in earnings because they are unable to work or have cut down their hours. Six in seven cancer patients see monthly expenses shoot up by £270 on average.
The financial burden of cancer is not the same for everyone. Those in work, and those with children, are more likely to bear the cost of their illness. The impact for those on low incomes is twice that for those on the highest incomes. And those with a rarer cancer are hit with a bill twice the size as that of someone with colorectal or prostate cancer.
How can employers help? What benefits are available? How can patients deal with the financial cost of cancer?
The panel so far …
Jo Salter, researcher, Demos Neil Shadbolt, customer diversity manager, HSBC Sarah Preston, welfare rights adviser, Macmillan Cancer Support Richard Exell, senior labour market expert, TUC Neal Southwick, financial support programme lead, Macmillan Cancer Support Paul Elkins was diagnosed with stage 3 Lymphoma in November 2010. He lost his job, had issues with benefits and incurred direct and indirect costs as a result of his diagnosis Cynthia Allan was diagnosed with breast cancer in October 2008. She has been unable to return to work after experiencing extreme fatigue and she struggles to pay her bills Linda Isted, communications manager, Debt Advice Foundation
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.
This is my first week in the full-time post as Project Lead for the Staffordshire (Macmillan) Cancer Peer Advocacy and Support Project as reported in my blog of 16th December. We have recently publicised the project locally and were fortunate enough to have one of our clients, David, talk to the press and participate in local radio interviews. The links are below:
We have appointed our first 2 Volunteer Co-ordinators, one for Staffordshire (North) covering Stoke on Trent, Newcastle Borough and Staffordshire Moorlands District and one for Staffordshire (Central) covering Stone, Stafford and Uttoxeter Districts. One of their first tasks will be to recruit more Volunteers.
This initiative for people of Staffordshire is thanks to Macmillan Cancer Support and OPAAL and I will keep you all informed with developments and progress. Hopefully more advocacy projects will be able to provide this specialised, much needed service for older people.
Marion, Nina’s advocate
Older People Living with Cancer 