Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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People were soon making friends and having a chat over a mince pie…

In today’s post Laura Thomas of Age Connects Cardiff & the Vale tells us about Carols and mince pies:

As a project that covers Cardiff and the Vale we wanted to plan something informal in Llantwit Major that would bring people together on a cold winter’s morning, and would reach those living in some of our more rural areas.

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We decided on a Christmas themed event with mince pies, drinks and a raffle with donations from the local Co-operative and Filco supermarkets and Sainsbury’s in Cardiff (Age Connects Cardiff & the Vale is currently their charity of the month). This enabled us to offer all refreshments and the raffle prizes for free.

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Information on our work and some prizes for the raffle

We opened the doors for 10.30am and after a short wait the room soon started to fill up. Some came with friends and others were dropped off by a relative or came alone. The atmosphere was upbeat and people were soon making friends and having a chat over a mince pie.

Angela, our independent advocate and Alice the volunteer co-ordinator spent the morning talking to the guests, explaining more about the Cancer Older People and Advocacy Project. We had our leaflets to give out and the OPAAL short film ‘Older People Affected by Cancer’ played in the background. Our volunteers were busy; Linda ran the raffle and Jeff took photos of the day.

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Tenovus choir

We invited Tenovus Cancer Care Choir to come and sing some carols for us. Their singing was amazing and they really helped to get everyone in the Christmas spirit and had everyone singing along. It also gave us an opportunity to talk to those in the choir about the Cancer Older People and Advocacy project and they in turn were able to speak to some guests about the great work provided by Tenovus. All in all it was a great example of how working with another third sector organisation can benefit those that we support.

Laura Thomas, Age Connects Cardiff & the Vale

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We celebrated our volunteer achievements at a Christmas lunch

In this post Jaunita Williams, Volunteer Coordinator at Sandwell Cancer Older People and Advocacy (SCOPA), tells us about a special festive lunch:

In December 2015 we invited our new Sandwell Cancer Older People and Advocacy (SCOPA) volunteers to join staff and management board members for Christmas lunch.
We chose a local pub and sent out the invitations with the menu choices. We were delighted they were able to join us in celebrating our year’s achievements. Our cancer advocacy volunteers were able to chat with everyone about their plans for the upcoming holiday period and we reflected on their contribution to the project. We had an enjoyable festive lunch and lots of laughs!


I have since been able to catch up with four of our volunteers and I asked them to define what it was that motivated them to get involved with the project and what they felt they had gained from volunteering. These are their responses.
• Sherry – as a breast cancer survivor and retired nurse I felt I had so much to offer to other people going through what I went through. I didn’t want to wait, I knew I was ready to start volunteering and I was given an advocacy partner quite quickly. I’ve supported her through a temporary displacement move and attended some hospital visits. I am really happy with how it is progressing and am looking forward to another partnership in the New Year.
• Andy – Recent circumstances out of my control meant I was wasn’t able to keep up my weekly visits. SCOPA staff supported me and attended meetings that I couldn’t go to. It’s all done at my pace and I feel I am making a difference and am appreciated. All the staff at SCOPA are helpful and I drop in whenever I am passing.
• Viv – I was placed with my advocacy partner within weeks of the training. As a survivor myself I knew how lonely it can be even when you have your family around you. I see my advocacy partner about once a week and we chat, he has lots of family and friends but they don’t know what’s on his mind. We find it easy to talk about his treatment and issues.
• Jim – I worked as a manager of a residential home for years and pretty much knew what to expect. SCOPA set up my advocacy partnership back in November but I have still to meet my partner. Her circumstances have changed quite quickly and she is now in a hospice, It is what it is, this is the nature of the work we do. Referrals take time to settle and I’m not surprised with how it’s going. Fortunately Sandwell Advocacy found other work for me to do, interviewing residents and family members in local homes. This is a really good use of my time and I feel that Sandwell Advocacy are allowing me to use my skills and experience to their best advantage.

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As we are now well into the New Year and back at our work we are happy to have recruited two further volunteers and we hope that our “old hands” will be available to talk to the new ones and be able to share their experiences and offer advice and support in addition to the full training package they will be attending.

Juanita Williams, Volunteer Coordinator, SCOPA


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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.

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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’.

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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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Bone Cancer Research Trust survey

The message below was received from Catherine Newman of the Bone Cancer Research Trust:

Bone Cancer Research Trust is carrying out a national survey into the experience and impact of primary bone cancer on patients and their families. Please could I ask for your help in sharing news of our survey with your blog readers?

Ahead of our 10th birthday in 2016, BCRT is undertaking an extensive project that will help shape our future vision and plans by ensuring that the needs of our stakeholders (patients, families, healthcare professionals, clinical researchers, fundraisers) are at the heart of what we do.

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As part of our project, we are conducting a national survey to capture the views and experiences of people whose lives have been affected by primary bone cancer. We hope that it will be one of the biggest studies of its kind.

Chondrosarcoma is a type of bone cancer which mainly affects people over the age of 50. Because primary bone cancer tends to affect young people and young adults, older patients are a much-neglected voice. We want to ensure that our national survey reaches older patients so that we can actively take their views and experiences into consideration.

We will share our research findings publically once our project is complete – we expect this will be in March/April next year.

There is some text below to help you share news of the survey. If you have any questions about our stakeholder research, please let me know. Otherwise, my thanks in advance for your help in distributing this.

Thanks and best wishes,

Catherine Newman

Bone Cancer Research Trust is conducting a national survey designed to capture the experiences and views of primary bone cancer patients and their close families/friends.

Adding your voice to their research will help shape their future plans, and create an up-to-date body of evidence about the impact of primary bone cancer.

Click on the survey link to take part , and don’€™t forget to share it with anyone you know who has also been affected by primary bone cancer: http://bit.ly/1Kln6VL

You can find out more about Bone Cancer Research Trust here

Catherine Newman

Communications Manager

Bone Cancer Research Trust

0113 258 5934 | 10 Feast Field, Horsforth, Leeds, LS18 4TJ

Help shape BCRT’€™s future vision and plans by taking part in our national survey on people’€™s views and experiences of primary bone cancer. This is open to patients, and their close family/friends.


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Human rights and advocacy

Emma Voglemann, a volunteer for the British Institute of Human Rights (BIHR), writes about why human rights are so important for advocates:

For advocates, human rights are a shared language of duty and respect that can be used to achieve good outcomes out of court. The Human Rights Act means that public authorities have a legal obligation to respect human rights when they make any decisions involving a person’s life. Advocates can raise human rights in discussion with a person or public authority and they can use human rights to give older people a voice in decisions about their own life, even if they may not have capacity for that particular issue.

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BIHR have worked with older people and advocates to help them understand and benefit from human rights. In our Guide for Older People we encourage older people to know how to utilise their human rights by recognising situations where rights may be at risk and how to seek help. Through our partnership work, those we work with have used the Human Rights Act to achieve real outcomes.

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Human rights advocacy in real life: Using the Human Rights Act to challenge blanket use of tilt-back chairs in a nursing home.

Laura is a consultant who works with older people, and having worked with BIHR is a keen proponent of human rights in NHS services. She was visiting a nursing home in London when she saw several residents were effectively trapped in special ‘tilt-back’ chairs. The chairs were being used because they stopped people in the home from trying to get up, falling and hurting themselves.

Sadly, this meant many older people who could walk weren’t able to get up and out of the chairs. Instead they had to wait for staff to come and get them out of the chairs so they could go to the toilet or go and get something to eat. The residents at the home who were previously very independent could no longer choose what they wanted to do with their days, and because they couldn’t walk around very often, they started to find walking very difficult.

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Laura was concerned this practice in the home raised human rights issues. She talked to the residents who were kept in the chairs, who told her they felt their dignity and independence was being taken away from them. Laura realised that by not allowing the residents who could walk the freedom to move around, their dignity and autonomy, protected by the right to private life in the Human Rights Act (Article 8) was being risked. She was also concerned that for some of the residents, it might even be inhuman or degrading treatment, which is never allowed under the Human Rights Act (Article 3). Laura raised her concerns with the staff and using human rights language they were able to see that treating all of the residents the same in order to protect the few who needed the tilt-back chairs was not appropriate. Residents who could walk were no longer placed in the tilt back chairs and staff encouraged them to start using their walking skills again.

BIHR’s project work with older people and advocates 

Through partnership projects with older people’s groups, including local branches of Age UK, we have worked to empower older people through training around how to use the language of human rights in their daily lives and to influence service delivery and policy.  

Through this work one group of older people in Derby made a DVD on the issues facing older members of the lesbian, gay, bisexual and transgender (LGBT) community who live in residential care, which received extremely positive feedback. (Watch the film here). Another group looked at the lack of public toilets and transport links, which helped them collaborate with other groups affected by this issue, such as disabled people and mothers with young children. They raised awareness about this issue and engaged with local officials.

If you’d like to find out more about our work with older people, or to find out more about how advocates can use human rights, check out our resources aimed at advocates and older people. All BIHR’s resources are freely available here.

If, like us, you think human rights are worth protecting, find out how we can stand Together For Human Rights, check out our page: The Human Rights Act: Protect What Protects Us All


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Smarter communicating is the name of the game

Last Tuesday OPAAL Trustees and staff came together to look at how we could develop our individual and collective social media skills. We were tutored by a very patient Jude Habib of Sound Delivery who managed to get the best out of what was a ragtag bunch, all of us it seemed at different experience levels.

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We looked at how we made use of Facebook, Twitter, our website and this blog.  We discussed how we could do things smarter and make everything we produce more eye catching and attention grabbing. We’re absolutely delighted that our newest member of staff, Angela Broadbridge, comes with a whole range of social media skills. Skills we’re sure to make good use of in the coming months and years.

As you can see from our photo taken at the end of the day, a good time was had by all.

This is how we looked at the end of the day!

This is how we looked at the end of the day!

We left tired but invigorated and also determined that we’ll all contribute to better telling the stories that matter; the stories of the older people our members support and the wonderful work that advocates do every day. We have a follow up day for staff next month and are really looking forward to it.

Our thanks go to BIG Assist for funding our social media skills training.

Marie McWilliams, National Development Officer, OPAAL