Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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Patty Doran: research and evidence to support advocacy services

Evidence of the impact of small, community-based services is often hard to convincingly portray.  We can tell stories about the people who have used our services.  These stories generally generate positive responses about how “obviously” a good service is being provided.  However, when it comes to securing on-going funding for services, more robust evidence is required.

This is the situation I was in a few years back when I was a Macmillan Information and Support Service manager of an innovative service based in Manchester’s community libraries.  We were lucky, after 3 years of Macmillan funding, I was able to secure another 3 years of funding from The Big Lottery.  My experience of running the service, and the endless task of proving its worth, spurred me on to complete a MSc in Social Change at The University of Manchester.  I enjoyed the experience of returning to study, and now I am researching full-time towards a PhD focussing on the social support needs of older cancer patients.

Through my research I have maintained contact with Macmillan and established new links with OPAAL and the Cancer, Older People and Advocacy project.  The work being carried out by the Cancer, Older People and Advocacy delivery partners directly parallels with my theories about the support needs of older cancer patients.  The stories that are shared through this blog highlight the important and valued role that the cancer advocates are playing.

Patty

Patty

I am now in the position to support the evaluation of the Cancer, Older People and Advocacy project by conducting independent research into the impact of advocates on the experiences of older cancer patients.  I am hoping to travel to several of the Cancer, Older People and Advocacy delivery services to carry out interviews with older cancer patients who have used the services, hear their stories, and draw together an analysis of the impact of advocacy.

So far, I have interviewed two people who have used the ICANN service.  Recruitment of participants for this research involves the support of the advocacy organisations involved, and I am very grateful for the support from Janet Cullingford from ICANN for her support in arranging the first two interviews.  Recruitment is dependent on the organisations’ advocates and workers, and requires negotiation and in some cases persuasion on their behalf to get participants on board.  However, the potential benefits are high.  Hearing the stories of older people affected by cancer who have used an advocacy service provides a contrast to the more common ‘expert patients’ used in many other qualitative studies.

Patty with Janet from ICANN

Patty with Janet from ICANN

Listening to the stories of older cancer patients provides important insight into personal experiences of having cancer treatment.  From these experiences we can learn about how the principals of shared decision-making are applied in treating cancer, if indeed they are.  Initial findings suggest that from the patient’s perspective there are limited decisions to be made, and health professionals are trusted and relied upon to make the treatment decisions.

Support during the cancer journey is highly appreciated, especially post-treatment.  One older person said that “without [my advocate’s] support I don’t think I would have got through it”.

However, more interviews are needed to explore these initial findings further. I am now hoping to recruit several more older cancer patients to be interviewed. For more information, contact Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester,  patty.doran@postgrad.manchester.ac.uk

Patty Doran


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Lights, camera, action!

Janet Cullingford, Services Manager at programme partner ICANN tells us about recently becoming a film star.

As part of the Older People’s Cancer Voices project running alongside the Cancer Older People and Advocacy Service, ICANN were recently asked to host some filming with Meirion Harries from WebEnable.org. 

Filming took place at a variety of venues in the Preston area, ICANN offices, Rosemere Cancer Information centre at Royal Preston Hospital and in a client’s home.

Margaret and Vivian

Margaret and Vivian

A series of interviews were carried out including clients of service, volunteers, local cancer champions board members, a Carer of an older person with cancer, project staff and a commissioner of advocacy services from our local authority.

Carol is an advocate

Carol is an advocate

 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.

 

Janet and Tony

Janet and Tony

It was a busy, exhausting but very enjoyable 2 days, and I’m sure that any of the other Delivery Partners who are joining in with the filming will find the same.

There are 4 separate short films, which will be developed from the filming that Meirion is carrying out. They’ll accompany the toolkit which is currently being designed to accompany and complement the Cancer Older People and Advocacy Programme.

The films will be shown to promote the service to potential clients, attract volunteers, promote the service to referrers especially health professionals, and also to future funders of the service.

Especial thanks to willing client Tony who allowed us to rearrange part of his kitchen, even turning off his freezer to allow best filming conditions.

Once completed we’re planning to use these films to showcase our work . How do you showcase what you do? Please do let us know.


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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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ICANN Flagship Event – Cancer and Older people

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

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

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.

ICANN staff enjoying the cakes!

ICANN staff enjoying the cakes!

 

Janet Cullingford, Services Manager, ICANN    


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Leslie’s story

Leslie was referred by a family member as he was diagnosed to have cancer of the lungs and bowel. It was also recognised that he had moderate learning difficulties which affected him in making informed choices, he also struggled with reading, therefore found information hard to access. Initial contact was at his home to ensure that he felt able to voice his concerns in a safe and familiar environment. During the first meeting we were able to discuss all the various areas of his life, in order for me to ascertain any areas that the advocacy support could assist him in. Over the next couple of meetings we were able to establish that he was having difficulty in retaining the medical information that he was given via his monthly hospital consultant meetings. It was therefore agreed that I would attend and we would, prior to the meeting, write down any pending concerns or medical problems Leslie was experiencing.

Upon attending the appointment I became aware that Leslie’s nutritional calorie intake was a grave concern. We therefore agreed that I would assist him in exploring different types of liquid nutrition that he could take to enable his weight to remain fairly steady. Consequently until his health deteriorated considerably he was able to maintain his weight at a satisfactory level.

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Unfortunately due to the nature of Leslie’s illness, his cancer being untreatable and terminal his needs have been continuously changing. As an advocate I have been able to accompany him on his journey. I was able to assist him with acquiring walking aids and having modifications made to his property such as extra railing support along the stair case.

More recently sadly, Leslie has deteriorated considerably and his social isolation has meant that he has been unable to meet his basic care needs. As a result I was able to help him identify various care package options. He is now receiving a care package at home, and I am still supporting him with his numerous hospital appointments. As his needs evolve my advocacy support will change. We are now currently identifying accommodation options, looking at various care homes and discussing his wishes with regards to palliative and end of life plans.

This clearly has been a very challenging journey for Leslie, particularly as he has been socially isolated and felt very alone. Advocacy support has allowed him to voice his fears and concerns and crucially ensure that he understands the procedures and transitions which sadly are imminent. Although advocacy support hasn’t altered the eventuality it has ensured he maintained his personal dignity and had respect and independence through a difficult time.

Aneesah Bana – Cancer Advocate, ICANN


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What’s been going on in Lancashire

We have been very busy here in Lancashire since the launch of our Cancer, Older People and Advocacy project on the 1st of August 2014.

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Pat, Aneesah, Carol & Janet

7 volunteers have already attended Cancer, Older People and Advocacy training to add on to their existing volunteer advocacy skills, and with the help of our local press we are starting to recruit the next cohort of volunteers for proposed training at the end of September/beginning of October.

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We publicised our project launch in the Lancashire Evening Post and the article can be viewed here. Another local newspaper printed an article about us around volunteering which has successfully attracted a response from 5 potential volunteers.

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ICANN have received quite a few enquiries from health professionals, potential service users, their carers, friends and family members, resulting so far in 13 referrals to the service, which we are allocating to volunteers with support from myself and Aneesah our paid advocate.

Janet Cullingford, Services Manager, ICANN