Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Max Neill

Last week we heard the sad news that one of our Older People’s Cancer Voices steering group members passed away. OPAAL’s Ang Broadbridge shares her thoughts on a recent blog post of Max’s that struck a chord with the steering group:

I met Max Neill in the summer of last year at a Coalition for Collaborative Care event; Max was sitting at the same table as me and he shared with us copies of his one page profile during the break.  I’ve worked with one page profiles with adults with learning disabilities, and our Cancer Older People and Advocacy partners were also exploring them with Helen Sanderson Associates so I was interested to know more.  Max told me about his bowel cancer diagnosis and how his profile helped him express his wishes; it’s always good to get chatting with someone who ‘gets advocacy’ and so I followed him on twitter.

Some time later, when we came to look for representatives for our Older People’s Cancer Voices steering group, my colleague Janet Cullingford from I-CANN suggested Max.  I hadn’t made a connection between his role at Connect4Life being based in the same locality as I-CANN but was really pleased when our paths crossed again and he agreed to join us.

Although he didn’t manage to make a steering group meeting we kept in contact via social media and the telephone, Max signposted me to lots of great resources and kindly said that he’d be happy for us to share aspects of his story from his blog as part of our Older People’s Cancer Voices storytelling.

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I found that everyone I came into contact with who knew Max spoke very highly of him, and his generosity of spirit, so at our last steering group meeting in January his ears must have been burning because we were talking about his latest blog post which we’re sharing with you today.  This post appeared on Max’s blog at the end of December 2015:

Christmas in the Hospice

I didn’t expect to be waking up on Christmas morning in a hospice.

But my life’s like that now. The results of one scan can throw all my plans up in the air.
And the results of my last scan weren’t the best I could have hoped for.

I’m far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.

I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.

So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.

And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.

Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!

Christmas was lovely here.

It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.

As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.

Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.

I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of  ‘professionalism’ or for countless other persuasive reasons.

The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.

I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”.  I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!

I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of  CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”

Time with family. Time with the people special to me. That’s what I’m focussing on right now.

Our thoughts are with Max’s family and friends.


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OPAAL’s 5 take-aways from Social Media Exchange 2016

In this post OPAAL’s National Development Officer Angela Broadbridge tells us about her recent attendance at Social Media Exchange:

Earlier in February I spent the day at Sounddelivery’s Social Media Exchange; an action packed training day themed this year around storytelling. The agenda spoke directly to the aims of our Older People’s Cancer Voices project:

“#SMEX16 puts you at the centre of the story. Find the right social media strategies, story telling skills and latest technologies to get your message out there and make sure it’s heard” (SMEX16 website)

We all had the opportunity to attend four structured training sessions, interspersed with bitesize stories from charities who are at the cutting edge of service user storytelling. I shared some of the stories we’ve been working on throughout the day:

OPCV

These are my five top take-aways from the day:

  • Respect and Integrity

Rachel Jasper from Coram led a hugely thought provoking session on Managing Your Incredible Content – when talking about the challenges of managing often complex and challenging stories Rachel reminded us that whilst the content might be sensitive we shouldn’t assume that our beneficiaries won’t want to share their difficult or emotional stories. This echoed Soundelivery’s Jude Habib earlier in the day “we need to be braver at telling the stories of the people we champion.”

We might have to negotiate the content and work together to safeguard the identity or sensitive aspects of these stories, but it’s our responsibility to make these stories real, in OPAAL’s case to give a voice to older people affected by cancer, “as long as we help them to share their experiences with integrity and respect.”

  • Content for commissioners

I took the opportunity during a session with Darren Murinas from Expert Citizens to ask Darren and Jude’s advice about choosing content for commissioners. Often we’re given a very short time slot with commissioners and we need to make a big impact to make sure we get invited back for further discussions. Darren and Jude suggested using short 30 second soundbytes to maximise impact, and reminded us of the power of short audio recordings. We’ll be trying to do more of this in supporting older people affected by cancer to tell their stories (Darren recommends using the Audioboo app for this).

  • Youtube channel strategy

We got lost in Youtube for an hour with one of Youtube’s audience development strategists Olga Goodman-Stephens; my top takeaway for advocacy organisations with a Youtube channel is to check out the Creator Academy’s 10 Fundamentals for great advice on personalising your channel. We’ve taken on board some of the tips to give our own channel a new look, including using personalised thumbnails to give our channel a more inviting look. One fact from the day that really surprised me was that more and more of us are using Youtube as our primary search engine instead of Google, so if we want our content to be seen film will become increasingly important.

  • Blogging as a way to empower

We’ve been blogging stories for a long time on this site, it was really nice to get a reminder of how writing and storytelling can empower people who use our services. Darren from Expert Citizens talked in depth about his story which you can read here and how blogging brought new opportunities to him and opened doors; he went on to say “every bit of experience in my life was worth it because of those blogs.”

Seaneen Molloy-Vaughan from Mind who led the blogging masterclass set us a great challenge, to take five minutes to write five points on a topic and then draft a blog in five minutes. This take-aways blog post was borne out of my five minutes and reminded me to try to blog on the go more!

  • Explore new tools for storytelling

In our case exploring Storify as a great tool for curating social media content around a theme and turning it into a story – and here’s our first story, tweets and re-tweets of interest from Social Media Exchange 2016!

Ang Broadbridge, OPAAL

 


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Amplifying older people’s cancer voices into clinical commissioning groups

The final film in the series we have been sharing all this week sets out a rationale for clinical commissioning groups (CCG’s) to engage with local cancer, older people and advocacy projects. The aim of this engagement is two-fold.  Firstly, we are keen to support the voices of older people affected by cancer into local commissioning practice to support service pathway developments.  Supported by OPAAL and the Cancer, Older People and Advocacy programme partner projects older people affected by cancer are actively engaged in starting conversations with commissioners, getting involved in local service design and developing better services for their peers through our local cancer champion boards and our Train the Trainer project.   Secondly we are using this film to help us to make the case for long term commissioning of peer advocacy services for older people affected by cancer by CCGs.

This film features older people affected by cancer talking about the effectiveness of peer advocacy support, alongside health and care professionals and commissioners who are building strong relationships with their local cancer, older people and advocacy projects:

Our Older People’s Cancer Voices project is about taking these messages out into local communities to start, and to support, conversations between older people affected by cancer and local commissioning groups, we look forward to making contact with you soon.

Ang Broadbridge, OPAAL


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Encouraging health professionals to refer to us

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.

Ang Broadbridge, OPAAL


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Volunteer peer advocates on film

We think that the second of our Older People’s Cancer Voices films really well captures the passion, experience and knowledge of our volunteer peer advocates, as well as giving a flavour of what to expect when becoming a volunteer yourself.

We recently had two guest blog posts on the Big Lottery Fund blog featuring volunteers talking about their motivations for getting involved in the Cancer, Older People and Advocacy programme, and how they themselves benefit from their volunteering role.

We wanted to bring to life this unique volunteering role, and OPAAL and our project partners could not deliver the Cancer, Older People and Advocacy programme without the support and dedication of our volunteers, so this films is about highlighting and celebrating all that they do:

A big thanks to all of our volunteers, and we hope to welcome new older people affected by cancer on board, to find out if we have a service in your area see the About Us page of this blog.

We’ll be back tomorrow with our film aimed at health professionals.

Ang Broadbridge, OPAAL


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Cancer, Older People and Advocacy on film

The first of our Cancer, Older People and Advocacy films provides a strong introduction to the Cancer, Older People and Advocacy programme. It’s a short film intended to give a flavour of the programme, demonstrating the difference independent advocacy makes for older people affected by cancer.

This film also brings a focus to the support we offer to older people affected by cancer who don’t have cancer themselves. It features Mike Pochin from Dorset Advocacy talking about the emotional pressures that carers feel, the role peer advocates can play in being a listening ear for carers and helping give clarity about the help they feel they need and the additional services that they might access to get that support.

This film features older people affected by cancer, and volunteer peer advocates talking about the need for independent advocacy, the benefits having the support of an advocate can bring for any older person affected by cancer and encourages you to find out more about our programme:

We’ll be back tomorrow with a film aimed at encouraging new volunteer peer advocates to join us.

Ang Broadbridge, OPAAL


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Amplifying Older People’s Cancer Voices through film

Do you want to see our Cancer, Older People and Advocacy (COPA) programme brought to life in film? Then stay with us all this week to find out more!

Our Older People’s Cancer Voices project is funded by Department of Health to September 2017. This project is about amplifying older people’s cancer voices into a wide range of settings to bring to life the effectiveness of independent advocacy support for older people affected by cancer.

Margaret and Vivian

Margaret and Vivian

A key output of the project is a set of films featuring older people affected by cancer, together with their volunteer peer advocates, and health and care professionals and commissioners, talking about the difference advocacy makes.

Working with Cancer, Older People and Advocacy project partners Beth Johnson Foundation, I-CANN, Help and Care and Dorset Advocacy we are delighted to see the release of our year one films.

Throughout spring and summer 2015 these project partners worked alongside OPAAL and our filmmaker Meirion Harries of Webenable to bring together older people affected by cancer who wanted to use their knowledge and experience to develop better services for their peers. In addition to securing a fantastic team of volunteers and advocacy partners who were willing to go in front of the camera our project partners themselves participated. They were able to secure a wide range of health and care professionals and commissioners whose experiences will support and encourage their own professional peers to see the value of advocacy for older people affected by cancer.

As project partner Janet Cullingford from I-CANN reflected in a recent blog post:

 Everyone who took part commented on how much they had enjoyed being a part of it, and were made to feel at ease by both the interviewer and Meirion. It also provided fascinating insights into the way that films are edited, cuts used, even the importance of lighting.

OPAAL’s Ang Broadbridge reflected on her experience of the filming process:Web

This series of films forms part of a package of capacity building support that cancer, older people and advocacy project partners can use to promote and develop their services. Each film has a call to action; for example to encourage new volunteers, to support health and care professionals to make referrals, and we are excited about showcasing these films and getting these key messages heard. I’m hugely grateful to the project partners and participants for their support in making these films a reality, I want to say a big thank you for all your support!

Thanks also to Meirion who has captured so well the experiences of older people affected by cancer, the motivation, commitment and passion of our volunteer peer advocates, and the understanding of advocacy that the professionals we work alongside have developed. Meirion’s own understanding of advocacy and sensitive approach to storytelling has helped us to really capture and amplify the voices of older people affected by cancer.

We’ll be releasing a film each day this week on the blog, starting with an introduction to the Cancer, Older People and Advocacy programme tomorrow, make sure you visit us again to be the first to see it.

Ang Broadbridge, OPAAL