Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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How do we tell our stories?

Today Janet Cullingford, Services Manager at ICANN, wonders how we can best relay the stories of those we support:

Alongside our participation in the Cancer Older People and Advocacy programme, ICANN is a delivery partner and member of the Older People’s Cancer Voices project steering group.   I have been musing of late on the subject of how we can best tell the stories of the people we have been working with and promote the fantastic work our advocates, especially our peer advocates, have been carrying out to improve the lives and experiences of older people affected by cancer.

ICANN staff and volunteers have started a series of workshops to increase and improve our social media presence. In the first one we gathered our thoughts to develop a strategy and plan for how we can best promote our work, and are going to do further workshops to improve our Facebook and Twitter skills.

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We started a Twitter account very recently and have already gained 75 followers, come and tweet with us @ICANN_Advocacy. Andy one of our younger volunteers manages our Facebook page for us www.facebook.com/ICANNLancs. It would be great to see you on there!

The words we choose can be very important, do we TELL our stories or even SING about them. Whilst talking to many of the people who access our services, some like to ‘Tell a Tale or two….’

UntitledMany people talk about their cancer journey, however others do not feel that this truly reflects their experiences, and a journey implies a destination.

As advocates we are there to be a voice for our clients, when their ability to voice things may be wavering due to illness, age or vulnerability, but we must be sensitive that when we tell their stories it is in a way that they are comfortable with.

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Margaret and Vivian from ICANN

ICANN took part in the series of films that OPAAL produced last year to promote Cancer Older People and Advocacy. One of our clients enjoyed participating so much he treasures the picture he was presented with and has requested a copy of his entire interview prior to it hitting the cutting room floor!

Janet Cullingford, ICANN

What’s the best way of telling stories that reflects the value of the support our advocates provide? Tell us what you think.

Marie, OPAAL


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Smarter communicating is the name of the game

Last Tuesday OPAAL Trustees and staff came together to look at how we could develop our individual and collective social media skills. We were tutored by a very patient Jude Habib of Sound Delivery who managed to get the best out of what was a ragtag bunch, all of us it seemed at different experience levels.

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We looked at how we made use of Facebook, Twitter, our website and this blog.  We discussed how we could do things smarter and make everything we produce more eye catching and attention grabbing. We’re absolutely delighted that our newest member of staff, Angela Broadbridge, comes with a whole range of social media skills. Skills we’re sure to make good use of in the coming months and years.

As you can see from our photo taken at the end of the day, a good time was had by all.

This is how we looked at the end of the day!

This is how we looked at the end of the day!

We left tired but invigorated and also determined that we’ll all contribute to better telling the stories that matter; the stories of the older people our members support and the wonderful work that advocates do every day. We have a follow up day for staff next month and are really looking forward to it.

Our thanks go to BIG Assist for funding our social media skills training.

Marie McWilliams, National Development Officer, OPAAL


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The Changing Face of Cancer Support by Chris Lewis

I would like to start this piece by thanking Marie and the OPAAL organisation for inviting me to write a guest blog. My own experience got me into cancer support, and I would like to explain how that happened, and a bit about what I do now.

In 2007 I was a self-employed business consultant, specialising in the ladies fashion business. I was flying around the world buying and selling, and generally enjoying myself. The landmark of fifty had been passed without any health issues at all, so I was looking forward to a few more years of work, then early retirement, to travel with my wife.

Unfortunately I got sick soon after those decisions and I was told I had a rare incurable blood cancer, (Mantle Cell Lymphoma) and it was stage 4. I had aggressive chemotherapy followed by a stem cell transplant in an attempt to give me more time. This has left my immune system compromised and I now suffer from a regular onslaught of infections and viruses, meaning I have required treatment constantly since.

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Chris Lewis

Realising I would never be able to return to work, as my health had now become unreliable, I decided I wanted to focus on a project. I had seen for myself the total lack of effective support for people after treatment and decided I would try to improve that. I was so shocked at how bad things were and I felt that too many people were just happy to accept that as reality for people after a cancer diagnosis.

I needed to understand better how the current system works, so did a lot of volunteering with local and national charities, and in between also spent a year on a course to learn more about cancer and its effects. This was a fabulous fit for me, because with my unreliable health I could volunteer when able, and it gave me the focus I craved.

After several years, people were noticing my work and I won some national awards and my profile in the cancer community was raised. I was doing a lot of public speaking but I knew that there were so many more people I couldn’t reach. My friends suggested that I take to the internet and write a blog, to help contact more people, and this I did. Very slowly things progressed and the audience grew, and today we are read in most countries around the world. Not only by people affected by cancer but also clinicians and people working for large health organisations.

Social media has helped me work with so many people I could never have imagined, and my reach is larger than I could ever have achieved without it. I still work ‘face to face’ with support groups regularly, but I am finding more people are enjoying the freedom of social media. On these platforms you are not constrained by time, weather, transport and health etc. You can also be anonymous if you choose. But I am also aware that there is still a part of our community that is not yet used to that method of communication.

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My work covers people affected by any cancer, as many of the issues we face are common with every disease. I also work with all ages and I am delighted that the popularity of my work is now increasing in the teenage and young adult area. I do my best to collaborate with existing organisations, as resources are scarce so no need for duplication. However there are currently many gaps in service and I do my best to fill some of those.

I was interested to see the work that Cancer, Older People & Advocacy does with peer support, and reading the criteria I realise that I fall under your umbrella myself! It is such an important aspect of my work, but of course there is only me, so couldn’t work in the way that you do. One of the biggest issues I have seen with cancer is that it makes people feel isolated, and I do my best to connect with as many people as I can to help with that issue.

My experience also shows me that there are many organisations out there doing fabulous things, but are not being found by the people that need them. Many of the larger ones seem loathe to signpost to services that are not associated to them. Therefore I do my best to share resources and encourage people to collaborate much more.

That is a brief idea about the work I do. Please feel free to visit my site where there is a lot more detailed information. You will be able to see videos etc explaining more, and you can read from the back catalogue of my own blogs.

Chris Lewis


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Twitter: our most recent (successful?) foray into social media

A few weeks ago OPAAL Chief Executive Kath Parson wrote a blog post about an amendment being put forward in the House of Lords by Baroness Barker. The amendment seeks to have independent advocacy included in the new Care Bill which is currently before Parliament. We at OPAAL haven’t been that great at getting to grips with social media as an influencing tool but this seemed like too good an opportunity to miss.

Putting my very new tweeting skills to the test, I tweeted to Baroness Barker to thank her for putting forward her amendment. Amazingly, almost instantly I got a response from the Baroness pointing out that she was not alone in her efforts to get the amendment passed.  She mentioned both Norman Lamb and Paul Burstow as supporting this important issue so I tweeted to thank them too. Before I knew what was happening I was getting tweets back from these prominent politicians thanking OPAAL in turn. Why not give it a try? If you’ve got a message to get across Twitter may be the way to go, I’m certainly impressed.

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Twitter feed

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