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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A Big Thank You to ICANN Volunteer Cancer Advocates

To celebrate Volunteers Week 2015, ICANN arranged a Volunteers Celebration Event in conjunction with Dobbie’s Garden Centre

We all enjoyed watching an informative demonstration about potting herbs, their uses, and how to look after them. Even gaining some new recipe ideas in the process!

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This was followed by a scrumptious luxury cream tea, giving plenty of time to chat, and catch up with other volunteers and staff.

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During the afternoon we also introduced the idea of One Page Profiles for Volunteers, and will be continuing to work on this at our next Volunteer Team meeting/Group Supervision.

All volunteers received a certificate thanking them for their contribution to volunteering with ICANN during the last year.

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Dobbie’s also kindly donated a planted herb collection in a terracotta pot which was raffled and won by one of our volunteers.

Janet Cullingford, ICANN


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One page profiles: a learning event

I attended the recent workshop in London run by Helen Sanderson Associates and led by Helen herself. HSA is working in conjunction with OPAAL on the Cancer, Older People and Advocacy project.

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The main focus of the day was for all Cancer, Older People and Advocacy delivery partners to learn more about Helen’s pioneering work in the use of One Page Profiles, and how we can make best use of them within our work with Older People. We had the opportunity to look at profiles that Helen’s team had done on some of our Cancer, Older People and Advocacy staff, along with other samples of this and how  they have been used  for example by Derby Hospitals NHS Foundation Trust. Together we then explored how we could build their use into our referral and recruitment processes.

By developing one page profiles for our staff, project volunteers, as well as the Older People Affected by Cancer we are providing advocacy support to, we hope that we can work together better. It is not just about matching advocates with clients, but about looking at what is important to people, and how that means we can best support them.

Janet Cullingford

Janet Cullingford

ICANN is currently recruiting for new volunteers for our Cancer, Older People and Advocacy project, and have some upcoming training sessions in March. We will be introducing the concept of one page profiles with these new volunteers, from when we first meet with them, do some exercises using conversation and attribute cards, as part of the training sessions, and hopefully continue to build their profiles together with them whilst they are in the process of shadowing.

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Volunteers themselves, need to be supported in their roles, along with our staff team. Working on the Cancer, Older People and Advocacy project can be extremely rewarding but also challenging and quite emotive at times.

If this is successful then we can roll this out to all our volunteers and hopefully make profile work an integral part of our good volunteering practices, along with the current on-going support and supervision package we provide.

Janet Cullingford,  Services Manager, ICANN


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5 benefits of using one-page profiles with volunteers

Helen Sanderson of Helen Sanderson Associates, project Strategic Partner tells us about a recent meeting of project delivery partners.

Last month I met with a room full of managers, who lead voluntary organisations supporting older people living with cancer. My brief was to explore the potential benefits of one-page profiles for the volunteers. I think that the best way to learn about one-page profiles is to do your own, so that is what we did. Working in pairs, using the ‘FINK’ questions, people developed their own one-page profiles.

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Back row, L-R: Naomi Karslake, Keri Harrison, Pat McCarthy, Ben Sansum, Phil Vining, Karen Pierce Front row, L-R: Janet Cullingford, Marie McWilliams, Juanita Williams, Helen Sanderson, Dave Bradshaw

 How can one-page profiles be useful for volunteers? This is what we thought about together, here are the five potential benefits of using one-page profiles with volunteers:

1) Knowing what matters to the volunteer makes it easier to match them to the older person.

A one-page profile has a section describing what matters to the volunteer, what is important to them. You may learn about family and friends, hobbies, passions and interests. My friend Gill is passionate about football, and loves dogs.  She has a fluffy cocker-poo. Gill would be great to match with someone who also loves sports and animals, and they would instantly something to talk about, to start their relationship.

 2) It can help to build relationships quickly

Having shared interests and knowing more about the volunteer will make it easier for the older person experiencing cancer to develop a connection and a relationship. We joke that a one-page profile is like spending three nights in the pub with someone! The volunteers for this work with OPAAL will also have personal experience of cancer. Having a one-page profile demonstrates that they are more than their cancer experience, and they are not defined by it.

3) The manager knows how to support the volunteer

The last section of a one-page profile is how to support me as a volunteer. The Golden Rule – treat people as you would want to be treated – does not apply here. Yes, you want everyone to be treated with kindness and respect, but we also need to learn the very specific and individual ways that people want support.

If you want to contact me about something, the best way to do that is by email or text. If you want to contact my colleague Michelle, her preference would always be that you phoned her. We need to learn the best ways to communicate and support each others, and recognize difference. By treating volunteers in this individual way, they are are more likely to feel valued and supported and therefore stay longer.

 4) It helps the volunteers connect with each other

We have just had two new people join our team. We work acorss the country, so our new interns, Ross and Heather, will mostly connect with other team members over the phone and by email. It can be hard to quickly build trusting relationships when people are not based together or sharing an office. We try and help by having a ‘meet the team’ book in our office, which has all of our one-page profiles in it.  If volunteers had this information available about each other, even in they did not spend a lot of time actually in an office together, it helps people feel connected.

5) It helps the volunteer feel valued, as a person.

Taking time to talk and learn about what matters to the volunteer and how to support them well, will make new volunteers feel welcomed and valued.

 The managers were concerned about the amount of time it could take to develop a one-page profile. So my next task, as part of the OPAAL work, is to map the ‘volunteer journey’ from hearing about the organization, right through to induction, and see how we can ‘grow’ a one-page profile naturally.

Whilst I was finishing this blog I had a tweet from one of the managers at Knowsley Pensioners Advocacy and Information Service, It said

“The introduction to one-page profiles went really well, got everyone talking and will be a work in progress as we go forward!”

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We will share our work in progress as we go.