If the news is really bad, he will be there to help me get through it

This is why our Cancer Older People and Advocacy Programme matters so much:

Our volunteer peer advocates have been supporting people like Ron: “When the letter came, it said I should take somebody with me. The problem is that I didn’t know anyone well enough to ask them to go with me.

I should have realised that I was going to get some bad news by the fact that they did suggest I didn’t go alone. Anyway, I did go alone and yet despite the clues, I was really shocked that I was told that I had prostate cancer. I went numb and my brain stopped working. It was all in a haze.

Later on I couldn’t remember anything that the consultant said to me. I know I was given a lot of leaflets because I had them when I got to the car. I don’t remember driving home at all. I felt a great sense of confusion, apprehension and got very depressed very quickly. I couldn’t bring myself to look at the leaflets that I was given because the whole idea of having cancer was terrifying and I had this idea that if I didn’t look at them, it may go away. Stupid when I look back.

I couldn’t even decide if I wanted to tell my children about my illness. I can’t really tell you why I felt like that. It may be I didn’t want to bother them, or maybe I was trying not to confirm the fact in my own mind. I was frozen and unable to do anything. I did come across somebody who knew about the cancer advocacy services. They gave me the leaflet and I called for help.

A volunteer advocate called David came along to see me at home. I got on very well with him from the start. He assured me that all the things that we would talk about would be confidential, which was still important to me at that time.

David was a really good listener and I was able to tell him my story very easily and without any difficulties. He had had an operation for cancer himself and was undergoing observation still. We talked for a long time in that first meeting and the longer it went on the more relaxed I began to feel. I was still worried of course but my brain seemed to be starting to think again.

One of the things that David and I decided to do on his second visit was to put together a list of questions that I should ask the doctor at my next appointment. I realised that I didn’t know anything at all about my illness and any treatment that might be proposed. David offered to go along with me to that appointment and I quickly agreed. I knew that I would probably not ask the questions or remember the answers if I went alone.

In the meanwhile we went through the leaflets that the Consultant had given me and together we got the picture of exactly what it was that I was suffering from and what might be done to help me. At our next meeting I had moved along far enough to tell David that I hadn’t told my daughter and son about my diagnosis. We talked and I decided that I wouldn’t tell them yet as I wouldn’t be able to answer the questions that they would have for me.

David and I started to look at possible sources of care that I may need. We also looked at various ways that I might be able to make myself more financially secure, or viable, as I was then starting to worry about money. I don’t know why at 72 years old. He found me the address of various places that offered advice and then helped me write a letter. I don’t have any answers yet but that at least has started that ball rolling.

David came along to the meeting with the Doctor and it was good that he did. Along with the trauma of all that I had been told, I have to confess that my memory has begun to fail me as well. That’s been happening for a few years. David was able to take notes and ask the questions that I was missing on my list. The Doctor was very good as well and he was very patient with me.

I look forward to David coming around or telephoning me. I know he will be there when I need to go to the consultant again, which is coming soon, when he tells me what is going to happen. I will not have to go to another appointment alone. If the news is really bad, he will be there to help me get through it. If it’s a matter of describing treatments, he will be able to ask the right questions and then tell me all about it when we get home.”

Cancer can touch every aspect of our lives. Some issues are resolved easily such as access to benefits or transport arrangements others are complex and take much more time.

All of our volunteer peer advocates take time to build that all important trusting relationship which enables the older person to confide worries and concerns. It is this trust that forms the basis of the relationship, our advocates understand the impact of a cancer diagnosis on the individual and are able to address worries and concerns with skill and sensitivity. That’s why our service is so different from every other. Our volunteer peer advocates really do have the gift of time.

You can read more stories like Ron’s in our publication Every Step of the Way which can be accessed here

Marie McWilliams, OPAAL

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Our volunteers visit the Queen Elizabeth Hospital

In today’s post our colleagues at Sandwell Cancer, Older People and Advocacy service tell us about their recent Local Cancer Champions Board visit:

At the start of 2016 we decided to liven up our Local Cancer Champions Board meeting and we invited our members to each make a pledge to the project.  This could have included showing the OPAAL films at staff meetings, talking to colleagues about Sandwell Cancer Older People and Advocacy or writing a blog. Mr Paul Litchfield, the Cancer Information and Support Services Manager at The Patrick Room, Queen Elizabeth Hospital Birmingham invited us to bring our volunteers over to find out more about what’s on offer for cancer patients in Sandwell and Birmingham. 

Eight of us made our way over by car and taxi and were very pleasantly surprised to find the fortnightly Queen Elizabeth Hospital Farmers Market was in full swing!  What a delight for the eyes and feast for the belly!  The first thing we smelt was delicious curry goat, rice and peas, a Caribbean favourite. We can only imagine the happiness someone would get if their visitors were to bring that up onto the ward at visiting time.  There were delicious fresh fruit smoothies and juices, freshly baked breads and cakes, jams, chutneys and pickles, pies, pates, meats, cheeses, teas, veggie meals, cakes, wraps, snacks, deserts and both local and exotic fruits.  Unfortunately we didn’t have time or we certainly would have spent a good hour wandering around.

Apparently there are always fruit and vegetables available for visitors and patients but this was an additional and amazing array of organic and homemade delicacies.  Certainly just what the doctor ordered.  We take our hats off to the organisers of this great market and I am sure we will be back.

Once inside the Cancer Centre we were greeted by Paul Litchfield who was our host for the day.  He had arranged refreshments for us on arrival and took us up to one of the training rooms where he explained all about the new state of the art hospital and all the services run in and around. 

The latter part of the session was taken up with case studies and some of Paul’s personal stories about his work.  Having been in nursing for more years than he was willing to admit to he certainly kept us entertained and gave us all lots to think about in relation to how times have changed and what the future might hold.  He also gave us some startling statistics and facts about cancer and specifically the Midlands area which has an increasingly diverse community.

The volunteers who have themselves had cancer were familiar with the setting and said it brought back many memories.  Those who had not been before found it extremely interesting and useful.  Paul extended his support to everyone and offered to be of assistance should any of our advocacy partnerships require his help and knowledge. 

What a great day out with people who are really making a difference and a fantastic pledge of help from one of our very own champions Mr Paul Litchfield.

Further details about the Patrick Room, Cancer Information centre can be found on http://www.uhb.nhs.uk/patrick-room.htm

And details of the Farmers market (for all you foodies) can be found on www.uhb.nhs.uk/farmersmarket

The Big Conversation

Every year in May, Dying Matters and its coalition members host an Awareness Week, which gives an unparalleled opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda.
It’s Awareness Week this week and it runs from 9-15 May with the theme ‘The Big Conversation’.

Did you know that research carried out during last year’s awareness week discovered that:

• 71% of the public agree that if people in Britain felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met
• Just 35% of adults said they had made a will
• Just 27% had let someone know their funeral wishes
• Just 7% had written down wishes or preferences about the care they would want if they couldn’t make decisions
• Just 18% had asked a family member about their end of life wishes

Our colleagues at Dorset Macmillan Advocacy are supporting Dying Matters week. Their display stand is promoting Advance Care Planning and the Cancer Older People and Advocacy service in Christchurch library all week.

You can join in The Big Conversation by looking out for and attending local events.

• You can also follow Dying Matters on Twitter, Facebook, LinkedIn, YouTube and Pinterest. 
• You can Tweet about it, always including the hashtag #BigConversation.
• You can also join in the #BigConversation on Twitter. Between 1-2pm GMT every day of Awareness Week Dying Matters will be hosting a Tweetchat on a variety of topics relating to dying, death and bereavement – and they’d love you to join in. Find out more. 

To find out more and see how else you can support The Big Conversation, click here

Marie McWilliams, National Development Officer, OPAAL

“this empowered her to then make the next step on her own…”

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.

Call 029 2068 3681 or email copa@ageconnectscardiff.org.uk

 

 

Advocacy is a serious business …

Today Pat McCarthy from KPAIS tells us about Advocafe:

Advocacy is a serious business…..

Except when it’s not!

Here at KPAIS we have been trialling a new initiative for older people in Knowsley.  We’ve called it Advocafe. It’s a way of getting older people together in a social setting to encourage peer advocacy and peer support. Ideal for our Cancer, Older People and Advocacy project.

So, over a cup of tea and a French Fancy we’ve shared information on advocacy services and health prevention ideas.  And we’ve asked all the people who attended what was important to them.  What do they want information about?  What would they like to see in these sessions?

Within 2 weeks new friendships had been formed, lifts were being given, wool was being shared.  And we were gathering really useful information about what older people wanted themselves.

Within our sessions we had all the information available about our Cancer Older People and Advocacy Service with the Every Step of the Way Books.  One woman told us about an experience she’d had many years earlier after a cancer diagnosis “I could have used someone like you back then!”  She was happy to share her experience with her table and she helped others to understand how the Cancer Older People and Advocacy service can help when you feel you need support.

One of our sessions brought in the cancer screening officer and it was so much easier to talk about bowel screening while we were all together, having a laugh, making it less embarrassing (one of the key reasons why people don’t talk about it).  And at another session we brought in the Ivan – Knowsley’s own cancer information bus.  Blood pressures were taken, advice was given and people felt supported and reassured that they could access this information.

We made Christmas cards (nothing like being prepared …) and gift boxes. This session was wittily titled ‘Advocrafts’ by one of our Sandwell colleagues!

We made advocacy approachable and we’re now looking forward to taking our Advocafe out to the rest of Knowsley later in the year, with a steering group formed of our first attendees.  It’s such a good vehicle for taking our Peer Cancer Advocacy out into the community and hopefully reaching a wider group of older people.

Pat McCarthy, KPAIS, April 2016