Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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As Volunteers Week draws to a close…

Our Cancer, Older People and Advocacy programme would never have achieved what it has without our amazing volunteers. They’ve supported us as peer volunteer advocates as well as local and national cancer champions.

Those who have been directly affected by cancer themselves have determined to give something back, to support others going thorough the same trauma and to help ensure older people don’t face their cancer journey alone.

Some of their stories are told in Time: our gift to you, our most recent publication. Today, as Volunteers’ Week draws to a close for another year, we’d like to share Claire’s story with you:

I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.

Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

One of the older people affected by cancer that I’ve supported is Sally (not her real name). She was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Sally lives alone, struggles to get out and had become very isolated and depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

In the first few weeks when I visited Sally at her home, we often would just talk and share experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

Since then, I have been able to help Sally in a number of ways. For example, I contacted Breast Cancer Care, I knew how good they were from my own experience, and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Sally suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Sally had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the Macmillan Cancer Support website. Sally doesn’t have a computer or access to the internet. I took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.

Most recently I was able to help Sally with her application for a one-off Macmillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her and I could use my experience to help with the spellings of all the drugs she was taking! She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

I hope that I have managed to convey that working with Sally has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system and how to get support. I am really glad to be able to put my experience to good use.

Our final thought this Volunteers’ Week is the adage: “Volunteers are not paid, not because they are worthless but because they are priceless.” So thank you to volunteers everywhere.

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Time: our gift to you

We’re absolutely delighted today to be launching our new book of volunteer stories from the Cancer, Older People and Advocacy Programme. Telling 19 different stories of peer advocates and cancer champions, it’s called “Time: our gift to you”.

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We’ve spent lots of time on this blog telling you about the difference our volunteers make to the older people affected by cancer they support. We thought it was about time we gave those volunteers an opportunity to tell their own stories.

Prior to developing this new publication our peer volunteers told us some of the reasons they’ve chosen to become involved:

“It makes a real difference to those we support. It ticks lots of boxes for me, I wanted to continue to use skill, experience & knowledge to help others, to make a positive difference to people’s lives.”

“I want to help people affected by cancer, and am happy to help people through the ‘cancer experience’. For me it’s all about putting something back, I was well cared for and I’m aware that a lot of other people are not so fortunate.”

“Because I believe I can make a real difference, I can help people practically & personally. I have a good idea of what people are going through. I can help them with their concerns or fears for the future. I enjoy being part of a team, and I enjoy the training offered to us all.”

“I feel I can relate to my advocacy partner very well due to my own experiences. I find it useful to have something in common with my partner in addition to the cancer. I am an empathetic person, a good listener and able to support others to express their concerns and worries.”

In addition to making a difference for others, Cancer, Older People and Advocacy volunteers also tell us they themselves benefit from their volunteering role.

You can read and download all 19 stories and find out why cancer advocacy volunteering is making such a difference by clicking here

Marie McWilliams, OPAAL


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A Bristol perspective…

Ben Sansum from delivery partners AgeUK Bristol gives us his take on what delivering a Cancer, Older People and Advocacy service has been like so far…

The Cancer, Older People and Advocacy project is a serious piece of work, which often involves working with people in very difficult situations. Despite this one of the joys of the project so far has been how keen different organisations are to partner with us at Age UK Bristol to make sure that the project reaches those older people who are most in need of help and support.Age UK Bristol Logo RGB

From the beginning we have been very lucky to have significant help from our local Macmillan Cancer Support services. At a regional level, the Regional Involvement Coordinator, Tracey Street, has been invaluable in introducing us to other parts of Macmillan. Closer to the front-line we have developed a very good working relationship with several Macmillan services that work directly with the public. The coordinator for our local Macmillan ‘Buddies’ scheme, Piers Cardiff, sits on our Local Cancer Champions Board, and has been great at identifying training opportunities for us, as well as referring ‘Buddies’ clients who need more in-depth advocacy to us for us to help. Through Piers we have been introduced to the staff and volunteers at the Macmillan Wellbeing Centre at Southmead Hospital, which directly led to us recruiting our first volunteer who has actually committed to doing the training and becoming an advocate.

BHOC Voice magazine

 

Between them Tracey and Piers have helped spread the word about our project to the huge range of Macmillan services across the city, including the CAB/Macmillan Welfare Advice service, and the Cancer Information & Support Centre at the Bristol Haematology & Oncology Centre (BHOC). These links have led to us having a large article in the BHOC ‘Voice’ magazine, which will be circulated among patients and staff for the next six months, giving us a very high profile among those people most likely to need the support of our Cancer, Older People and Advocacy project.

 

 

Beyond Macmillan we are building very useful partnerships with all kinds of organisations, from the social services department in the local authority to the human resources department at Bristol University. Most pleasingly we are starting to build a good rapport with a range of NHS services, including district nurses and home visitors, and the Long-Term Conditions Team at one of our largest inner-city health centres. It is always encouraging to meet with hard-pressed, time-poor professionals working on the most difficult cases, who still find time to meet with us because they think it will be beneficial for many of their patients.

Ben Sansum

Ben Sansum

 

 

Partnership working has a cumulative effect – the more you do it, to more word spreads, the more other people and organisations want to talk to you. It has proved key in the work of the Cancer, Older People and Advocacy project in Bristol so far, and we hope it continues to develop.

Ben Sansum, AgeUK Bristol