Kathleen Gillett from Cancer, Older People and Advocacy programme partner Dorset Macmillan Advocacy considers the relationship between the older person affected by cancer and their peer advocate:
He analyses why we have a natural tendency to try to give advice or at the very least to try to ‘say the right thing’ in difficult situations. Then he explains why we should not.
‘Talking at someone with cancer about what they should do, rather than being with them in a morass with no easy answers, is not you helping them’ argues Thrasher.
The relationship of a peer volunteer advocate with the person they are supporting (their ‘advocacy partner’) is not the same as the relationship between relatives or friends. Relatives and friends may be asked for and may offer their opinions. Advocates do not offer opinions or advice but they can listen and be present. They can, as Thrasher writes, ‘Just be with them in the unknown’.
In Dorset we have been fortunate to attract highly motivated volunteers. We find during our informal interview that most of them have a fair idea what advocacy is about even if they were unfamiliar with the term itself. During our induction training we see them gain a much deeper understanding while taking part in the discussions about the ethos of advocacy and examples of advocacy in practice.
To volunteer to be with someone ‘in the unknown’ is not an easy thing to do and it is the volunteers’ ability to empathise that gives them the determination to fulfil this difficult role. ‘Would you like to make a difference?’ is a familiar term on volunteer recruitment material. ‘Would you like to be with someone in ‘a morass with no easy answers’?’ is a phrase we would be unlikely to use on our recruitment posters but our volunteers are undoubtedly up to the challenge.
In today’s post John, one of our dedicated peer advocates tell us his story:
I came to volunteering following my retirement. I wanted to use some of the skills I had acquired during my working life in hospitals and my own personal experience of cancer to support others.
As a volunteer advocate for Age Connects Cancer and Older People Advocacy project, I provide non-judgemental support ensuring that the older people’s views and wishes are represented. As a volunteer advocate I ensure there is a better understanding of the clients’ needs, and follow instruction solely from my client; confidentiality and trust is key to this role.
One call was to support a lady with her decision about moving. I went to visit her at home and found she lived in a top floor flat with no lift. She had difficulty walking so was finding herself increasingly staying at home and going out less as she couldn’t face the thought of struggling with all the stairs.
She asked if we could gain some information from her Housing Association, so with her consent they were contacted and the information was obtained on her behalf. This information was discussed when I met with her face to face and we chatted at length about her possible options. She liked living in a flat as it was small and manageable. She also liked living on a higher level as she felt safe. However, she understood that with no lift and an impending operation which would incapacitate her even further, life in her top floor flat was going to become even more isolated and difficult. We talked further about the possibility of improvements she may find in her daily life if she moved to a property that had access to a lift and following this she felt more confident to phone the housing association to discuss her options and take it further. Having someone to talk to was vital for this lady, she had limited family and initially she didn’t know how to start the process of enquiry about moving, or even whether it was a viable option. Having spent time with her talking this through, I feel this empowered her to then make the next step on her own.
Another call was to visit a lady in Llandough Hospital. She had battled hard against her cancer and was now receiving end of life care in hospital. There was an absence of relatives so she was pleased to see a visitor. I had previously assisted her with some paperwork when she was at home, so it was nice to see her again, albeit in sad circumstances. I sat with her, held her hand and waited to see if she wanted to talk. When someone’s very unwell they may not want to listen to a chatterbox! Just being there and holding hands can help a person feel better.
She said she had declined physiotherapy because she was frightened in case she should fall. I spoke with the ward nurse and voiced the clients concerns – we arranged that the physiotherapy would start again. I enquired about my clients care as there had been some queries about a move to another hospital, at that point in time she was too poorly for a move to take place and going home was not an option as there was no one to take care of her. The process of what was currently happening was explained to my client and she understood why these decisions had been made. I made arrangements to visit again the following week, but very sadly my client passed away.
Through my volunteering work I support older people who have been touched by cancer with a range of issues, and hope to continue to do so. I can’t help with everything but I do my best. I make the extra effort to give my time and listen – I always listen.
John, peer advocate, Age Connects Cardiff & the Vale
Living in Cardiff and the Vale? If you or someone you know over the age of 50 is affected by cancer and could benefit from our service, please get in touch to discuss how a volunteer advocate could help you.
A problem shared really is a problem halved! Cancertalk Week 20-26 January 2014
Project partner Macmillan Cancer Support is running Cancertalk Week – Dealing with cancer is hard enough without worrying about it all yourself. If you’re embarrassed, worried about upsetting other people or just unsure about speaking out for whatever reason, Macmillan Cancer Support are here to help.
If you want to find out more information about your type of cancer or cancer therapy and treatment they have all the information.
As many people worry about financial support, specialists will be available to offer advice about your own personal case. Just give them a call on: 0808 808 00 00 or click here for some financial tips.
Macmillan Cancer Support also realise that catering to your emotional needs is a huge one. If you’d like to get put in touch with people that are going through a similar experience, you can join the online community or cancer support groups.
Find out more information about Cancertalk Week here. During previous Cancertalk Weeks Macmillan encouraged people affected by cancer to talk about it to sum up their feelings and worries with family, friends and professionals. Devastating, rollercoaster and heart breaking are just some of the words used to express peoples experience of cancer.
If you have cancer, try to speak to someone about it, and it doesn’t only have to be when this event comes around – there are people out there who want to help and listen.
Kath Curley
Cancer Advocacy Project Lead, Beth Johnson Foundation
Older People Living with Cancer 