Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Be Bold for Change on International Women’s Day

Today is International Women’s Day and the campaign theme is Be Bold for Change.  Big Lottery Fund are speaking to women who have made a big change in their lives and their communities.  Our volunteer peer advocates make a tremendous contribution, choosing to give their time to support their peers because they know that they can use their personal experience of cancer to make a difference to other older people’s lives.

 

Today we’re focusing attention on Claire’s Story, from our recent publication Time: Our Gift to You, which features volunteer peer advocates talking about why they volunteer, and what they themselves gain from their volunteering experience.  Claire has used her own experience of breast cancer to support Sally, her advocacy partner who has the same diagnosis.

Claire’s volunteering story:

“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.”

Read more about the inspirational volunteers who are being bold for change on behalf of and alongside their peers here

Marie McWilliams, OPAAL


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Meanderings of a Male Advocacy volunteer

In the second of two blogs from Dorset Macmillan Advocacy, produced for and published by BIG Lottery Fund last week, we hear from Bob Smith, a volunteer cancer advocate.

Bob Smith

recent report funded by the Big Lottery Fund revealed that men over 50 have a tendency to volunteer less than women of the same age. I think there are a number of reasons for this; for example, one is the fact that more men than women over the age of 50 tend to still be working, and therefore have less time available than their female counterparts. Also, many within this age group were brought up in an era when volunteering was seen as more of a woman’s domain; thank heavens this is no longer the case!

Volunteering can be so rewarding for those who give their time freely. We all have experiences, talents, and skills that can be used for the benefit of others. None of us know when we may need the help of others and it’s great to play our part whilst we can.

I have generally tried to help others if I have the opportunity but never more so than since I contracted cancer for the first time in 2007. By 2012 I had had the illness three times, plus a stem cell transplant. I was in remission again and looking for somewhere that I could really make a difference. I heard that a new project providing one-to-one advocacy support for older people affected by cancer was looking for recruits  so I applied along with my wife, Maddy, and we were both accepted.

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Being a volunteer advocate enables me to use my experiences to help others struggling with their cancer journey. A diagnosis is devastating to the patient, their loved ones, and their friends. Any of these people might need help and support. Having someone who is supportive, impartial, and empathetic (not just sympathetic) can be invaluable, and this can be especially relevant to the older person.

Advocacy doesn’t just benefit the person affected by cancer; I have learnt so much about how to support people with so many different needs. Each of my advocacy partners has been different and taught me so much. They have ranged from very positive to depressed and helpless to very capable, but all in need of someone to confide in.

Being a male advocate will obviously involve supporting men and women partners. However, certain types of cancer are very personal to a man (as are some to a woman). Having male volunteers also adds a different dimension to the advocacy;. a man affected by cancer might- open up more to another man as they will have had similar life experiences and views. Some say they can treat you more as ‘an impartial brother’.

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I would very much recommend that other men who have had experience of cancer volunteer as advocates. The emotional rewards are enormous and it’s a real blessing to be able to help others using the first-hand knowledge you have. I have every intention to carry on as an advocate and am finding new ways to help cancer patients in other ways as well. Cancer advocacy is the most important volunteer role I’ve had to date.

Dorset Macmillan Advocacy are parallel partners in Older People’s Advocacy Alliance (OPAAL)’s Cancer, Older People and Advocacy project which is funded through the Big Lottery Fund’s Silver Dreams programme.


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Encouraging more men to volunteer

Last week Cancer, Older People and Advocacy programme co-funder BIG Lottery Fund published two guest blog posts we provided for them. In case you missed them here is the first. The second will follow tomorrow.

BIG Lottery Fund’s recent Foresight report revealed that men volunteer far less than women. In the first of two blogs, we hear from a spokesperson at the Dorset Macmillan Advocacy about Graham, a male advocacy volunteer who supports people living with cancer…

At Dorset Macmillan Advocacy, both our steering group and our team of volunteer advocates have good male representation, although we don’t manage to recruit as many men as we do women.

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When three former service users were asked if the gender of their advocate was important to them, all three said it did not make a difference and that they simply wanted a good one. Of course, in some cases people might actively want an advocate of the same gender; for example, if they had a gender specific cancer. It is true that some of our male volunteers do seem to engage with their male advocacy partners in a particularly effective way. One partner even referred to his as being ‘like a brother’.

Graham-Willetts

Graham Willetts is on the steering group and Board of Trustees. As someone living with cancer himself, Graham was keen to help people in the same situation and joined the advocacy a year after his diagnosis. Having been an active member of his Parish Council for many years, he wanted to concentrate on developing cancer advocacy in Dorset. Graham has a professional background as a social worker, working in particular with disabled and older people.

Another reason Graham wanted to get involved was that because he was retired he missed the personal contact he used to have with people and the opportunity to challenge bad practice. Although he has learned how to be assertive in relation to his own care, he feels the nature of the disease means that even confident people can struggle and that it’s really useful to have someone else at appointments to ask questions.

Like Graham, volunteer advocates are generally motivated by wanting to help someone have a better experience than they themselves might have had. There are benefits for both parties and volunteers often report feeling ‘a lift’ as a result of their role.

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Looking back, Graham feels that without the support he received, and his own ability to research his condition, he would have been ‘in a mess’. Having more male volunteer advocates join our service can only be a good thing and Graham and our other male volunteers would encourage other men to join.

Dorset Macmillan Advocacy, are parallel partners in Older People’s Advocacy Alliance (OPAAL)’s Cancer, Older People and Advocacy project which is funded through the Big Lottery Fund’s Silver Dreams programme.

 

 


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Central Staffs Launch 23rd July 2014

23rd July saw us at Rising Brook Baptist Church in Stafford for the launch of our project in Central Staffordshire. We were joined by guests from across the sector, including VAST, Disability Solutions and  Katharine House Hospice,  along with our own colleagues from the Beth Johnson Foundation.

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Project Lead Kath Curley delivered a presentation outlining the history of the project so far.  Following a successful pilot project in Stoke on Trent and North Staffs, we now work in partnership with Macmillan Cancer Support, who are supporting and funding our expansion over the coming three years.

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Kath Curley

Kath used visual imagery including a snakes and ladders board to illustrate the highs and lows over the project’s journey. A jigsaw diagram showed how the four elements of the project – OPAAL, the Pilot Site, Macmillan and the Big Lottery – came together

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Kath was followed by Anna Lynall from Macmillan Cancer Support, who talked the audience through some sobering statistics about cancer and older people that really demonstrated the need for this valuable project.

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Anna Lynall

Our Volunteer Coordinator for Central Staffordshire is Amanda Carter, who joined us in May and is brimming with enthusiasm. Unfortunately, Amanda’s recruitment coincided with an unfortunate accident in which she broke her arm. This was something of a setback as we waited for her recovery and doctor’s permission to drive again. Luckily for us, she’s a trooper and has now healed well and is raring to go. Amanda is looking to recruit Volunteer Advocates in Stafford and the surrounds, aged 50+ with some experience of cancer related issues. If you would like to learn more, you can reach her at amanda.carter@bjf.org.uk

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Amanda Carter

If you would like to make a referral to the project, you can email macmillan@bjf.org.uk or call our office on 01782 844036. We accept referrals from medical staff and professionals as well as carers and relatives, or even self-referrals. If there is a need for an advocate to help someone navigate the difficult life issues that a cancer diagnosis brings about, we’re here to help.

 

Kath Curley, Project Lead, Staffordshire Cancer Advocacy

 


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About Cancer, Older People and Advocacy

This is the blog of the Cancer, Older People and Advocacy programme. Advocacy is all about Voice, Choice and Control and our programme is about putting that into practice.

We began our innovative project in July 2012 recruiting older people affected by cancer then training and supporting them to advocate for their peers. Between July 2012 and March 2014 we trained 56 peer advocates who in turn provided independent advocacy support to 174 older people affected by cancer. We also recruited 62 older people affected by cancer as National and Local Cancer Champions, these people are now very influential helping us shape and guide our project. On 25th March 2014 we published our first book ‘Every Step of the Way“: 13 stories illustrating the difference independent advocacy support makes to older people affected by cancer. Click here to find out how to download or order your FREE copy.

From May 1st 2014 thanks to continuing support from BIG Lottery Fund and Macmillan Cancer Support, the project expanded to include 9 delivery partners across England and for the first time 1 in Wales.

These partners have been delivering services from the outset: Beth Johnson Foundation in Staffordshire; Dorset Advocacy and Help & Care in Dorset and Sefton Pensioners’ Advocacy Centre in Sefton.

These new partners began delivering services during 2014: AgeUK Bristol; Knowsley Pensioners Advocacy Information Service (KPAIS); Oxfordshire Advocacy; Independent Community Advocacy Network North (ICANN) in Lancashire; Sandwell Advocacy;  and Age Connects Cardiff.  In 2015 we’re delighted to welcome new delivery partner Impetus who will be delivering services in Brighton and Hove.  If you click on the names of our local partners above you will be taken to their websites where you can find out their contact details.

You can learn more about our work by following this blog, just add your email address in the Follow box on the right hand side of this page. We update the blog regularly with news and stories covering cancer, older people and advocacy. Find out more by reading below…


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Find out why Macmillan is supporting our project

Following our successful funding application to BIG Lottery’s Silver Dreams Flagship Fund we recently held a celebration event to look back at the many achievements of the pilot project and to launch the newly expanded Cancer, Older People and Advocacy project which will kick off in earnest on 1st May.

At the event hosted by Macmillan Cancer Support, Jagtar Dhanda, Head of Patient Experience at Macmillan, explained why our project is so important for older people affected by cancer. Find out what Jagtar had to say by watching the short video clip below.