Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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Face to face support has the most impact

What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:

There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.

Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics.  In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.

Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more.  She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact.  She believes that the best services and support need to be local and need to understand the needs of the local population.

The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.

2 Kaths for the price of one - Kath Curley & Kathleen Gillett

Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy

Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’  This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.

The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to;  and 24% respond HNA.

I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be.  Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey.  At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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The fact that she was confident to say ‘no’ made me realise that as an advocate my job was complete

Mike’s Story, recently released on OPAAL’s YouTube channel highlights some of the many issues advocates support older people affected by cancer with.  Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate.  This story was produced under our Older People’s Cancer Voices work programme, and we have been identifying other stories for future filming.

Today we have a related post written by Aneesah Bana, the Cancer, Older People and Advocacy project advocate from delivery partner ICANN. Aneesah tells us about working with a client who was considering being the subject of one of our Older People’s Cancer Voices films:

When I was approached by OPAAL to identify a client that would be willing to participate in making a short film about their personal ‘cancer journey’ and how advocacy support facilitated them I initially thought I had the ‘ideal’ client who not only made profound changes to her life but was truly inspiring as a person who in the face of various adversities continued to not only remain positive but actually viewed her cancer diagnosis as a ‘blessing in disguise’.

Prior to diagnosis my client led a life that could be described as emotionally and physically chaotic. This started from childhood where she was the youngest from a family of six children. Events beyond my clients control were to shape and mould her childhood and many years into her adult life.

My client’s mother had abandoned her family when she was a child. With a physically and sexually abusive father my client grew up in an environment where neglect and mistreatment became the norm. These early childhood experiences were followed into early adult life as my client went into one abusive relationship to the next. To cope with the continuous emotional trauma ‘x’ became heavily dependent on alcohol and was also a heavy smoker.

I met ‘x’ as an advocate as she was diagnosed with throat and mouth cancer. At the point of meeting ‘x’ had given up alcohol and was successful at stopping smoking. Although my first meeting was to assist her during a DWP meeting I was genuinely intrigued at what prompted her change in lifestyle as my own previous employment role was in child protection and very rarely did I come across individuals who not only had a very clear insight of their problems but could identify the cycle of abuse and how she was able to stop this.

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Although my support with ‘x’ began on a more practical level where I aided her with benefits and appointments this moved on to something far more deep rooted as various dormant and repressed emotional issues came to surface.

‘X’ recognised that her choice in lifestyle was a direct result of severe early childhood trauma. When she was diagnosed with cancer many of these supressed feelings emerged. Consequently she would often tell me of experiencing vivid nightmares and flashbacks of what had happened. I was able to get ‘x’ specialist counselling which dealt with people who were diagnosed with cancer as they also recognised that it was not unusual for people diagnosed to resurface repressed emotional hardships when diagnosed and particularly once treatment has ended.

Over the course of a few months ‘x’ attended the sessions and the changes to her mental attitude were very apparent to see.

We often discussed how throughout life she was not able to recognise that it was healthy to have boundaries, particularly in intimate relationships but also with her own children. As over the years her relationship with her children also became strained as she felt that they too would on occasions manipulate her emotionally. Ultimately ‘x’ discovered that at times it is actually better to say ‘no’ to situations that inherently made her feel uncomfortable.

With these new found healthier boundaries however came more difficulties as she began to put them into place with her own children. Although ‘x’ faced this new difficulty she sincerely acknowledged that they were necessary.

The healthier emotional change also to a certain degree instigated a physical transformation. Where she once again started to take care of her herself and her appearance.

Due to these changes I initially felt that she herself would sincerely benefit by participating in the film. I was of the opinion that ‘x’ could not only visually see how far she had come but hopefully inspire others who are going through a similar experience.

Initially when I asked ‘x’ if she would like to participate in the film she was excited at the prospect and consequently I arranged a meeting with Justin the film maker.

Aneesah

Aneesah

At the meeting we discussed various issues and ‘x’ was very open about her experiences and how I as an advocate aided her. Throughout the discussion ‘x’ was very complimentary of the advocacy service and it was only after the meeting that I was able to help ‘x’ recognise that the changes actually came and were directed from her and I was able to merely facilitate them. Ultimately after the group meeting when I spoke to ‘x’ there was a sense of genuine self-acknowledgement at how far she had come.

Unfortunately soon after ‘x’ decided that she did not want to participate in the film citing that she was not comfortable and that she recognised that her privacy was important.

The old ‘x’ would have been to uncomfortable and would have attempted to appease myself and Justin in fear not to offend or inconvenience anyone by going along , when deep down it’s not what she would have wanted.

Ironically it is just the fact that she was confident to say ‘no’ to the film that made me realise that as an advocate my job was somewhat complete as her privacy was a ‘boundary’ and the new ‘x’ confidently put it into place!

Aneesah Bana, ICANN


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Peter’s story, part 2

Last September, Helen Vernon, advocate from Sefton Pensioners’ Advocacy Centre, wrote a blog post telling us about Peter (not his real name). Helen provided Peter with the advocacy support that meant so much to him. You can find the first part of Peter’s story here. Today, we find out what happened next…

When I first met Peter, he told me he had terminal lung cancer and he had 12 months to live.  He contacted us because there were some issues with his accommodation and he wanted to resolve them with the housing association rather than waste his time moving, as mentioned in my earlier blog post.   He was very happy with the advocacy support and so a few months later when he was having health problems he contacted me again. 

Peter asked me to accompany him to an appointment, which I agreed to do.  Unfortunately, his health deteriorated suddenly after Christmas and the planned surgery was cancelled.   He obviously felt a sense that he needed to put things in order so he asked me to write a will for him.  As an individual can write his or her own will, it was agreed within the team that I could do this for him.  I explained to Peter that I was not giving legal advice but simply documenting his wishes and having them witnessed.  In fact, there was very little to leave and it will be used to pay for his funeral.

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Peter was admitted to hospital then a hospice, discharged home and readmitted.  At each visit, I could see he was becoming frailer.  One of his relatives lived abroad and I kept her up to date with his condition at his request.  Before the final admission to the hospice, he spoke to me about wishing to go to a nursing home, as it was important to him to have his own television in the room and he felt the hospice was a dark place.  I agreed to visit him after the weekend and prior to this visit, I researched the availability of nursing beds in the area.  I arrived at the hospice and spoke to the nurse about his condition.  She told me to be prepared as Peter was not in the same condition as when I had seen him on the Friday.  She was right, he had deteriorated even further and his usual spark had faded.   

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Over the past three years I have worked with lots of service users who have been given this diagnosis and sadly, I have closed several cases because the person has passed away.  However, for one reason or another this has been the first time I have had cause to visit someone in his or her final days in the hospice. Perhaps because this gentleman’s family all live abroad and so he did not have the same support networks, it was even more important that advocacy was there for him.  I spoke to the nursing staff earlier this week and his relative was on her way to be with him.

He once told me “advocacy gave me a lot of hope that things would improve and they did improve” and “advocacy kept me going”.  I hope in many small ways we have helped him along his journey.

Peter’s niece called me this morning to tell me that he sadly passed away on Saturday morning with his family at his side.

Helen Vernon, Sefton Pensioners’ Advocacy Centre

(Our thanks to Helen for this moving account of Peter’s end of life story and the obvious impact on Helen herself,  Marie, OPAAL)


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We’re marking World Cancer Day

Since today, 4th February, is World Cancer Day, we wanted to mark it by sharing a story from our recent publication: Facing Cancer Together – demonstrating the power of independent advocacy.

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Charlie’s story (as told by Karen his advocate with input from Pat, his wife)

Charlie was referred to the advocacy service by the Macmillan Benefits Advisor. He’d been a hospital inpatient for 9 months as he was still being fed through a PEG (a line straight into his stomach) after radiotherapy to treat throat cancer. He hadn’t been able to return home as an appropriate Care Package had failed to be put in place. Although he was free to leave during the day, he had to spend the night on the ward while the liquid feed was slowly fed into his stomach.

Charlie believed that the radiotherapy had ‘burned a hole in his throat’ and he had wanted to pursue a complaint about this but in fact this turned out not to be the case. Working with Karen his advocate he was able to understand better what was happening and why he was experiencing the symptoms he had. Charlie was also understandably really fed up at being stuck in hospital and wanted to get back to living as independent a life as possible.

Charlie and Pat

Charlie and Pat

Charlie had a long history of alcohol abuse although he had long periods of sobriety. Throughout his adult life, during his more functional periods he had sustained a relationship with Pat and after his diagnosis she was there to support him. Unfortunately, prior to his diagnosis Charlie had been drinking heavily and found himself in a vulnerable situation where his flat was frequented by (often unwelcome) visitors and neither the location nor the condition of the flat meant it was a suitable place to be discharged to and for nursing staff to attend.

Due to his alcohol use, Charlie’s memory was very poor and when he was drinking he had been exploited financially by some individuals in his life. As a result a Power of Attorney was lodged with the local authority and his finances were controlled by a Deputy there.

Pat was keen to support Charlie and Karen his advocate quickly got to know them both. Together they were struggling to get things in place to facilitate Charlie’s discharge. Pat’s flat was too small to accommodate the medical equipment and visiting medical staff that this would entail and she understandably felt unable to take on the medical aspects of his care.

Pat describes Charlie at the point when he was first introduced to Karen, “He got very depressed. They kept saying they’d release him from the hospital, but it didn’t happen. They couldn’t sort out his care at home, so they couldn’t work out how to discharge him. He couldn’t eat, but he could drink alright. He told me he’d had enough.”

Charlie’s future was far from certain when Karen first met him, he’d had radiotherapy to treat his throat cancer but there was no definitive prognosis. Karen attended appointments with him and his partner (and latterly wife) Pat.

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Karen supported Charlie at appointments, reminding him, ensuring hospital transport was in place and liaising as requested with health care professionals to ensure that he understood what was happening. She ensured he was supported to return to being able to eat some foods as soon as possible rather than taking all his nutrition via the PEG.

 

Once Charlie’s diagnosis became terminal, the focus of the advocacy centred on supporting him to stay in control of his life right to the end. Charlie desperately wanted to leave hospital and Pat and Charlie wanted to finally get married. The advocate was able to represent Charlie to both the Deputy administrating the Power of Attorney and his Social Worker to facilitate not only these wishes but also his wish to die at home.

Karen helped Charlie and Pat get appropriately graded on the housing list and successfully bid on a two bedroomed bungalow. When relations broke down with the Social Worker Karen negotiated on Charlie’s behalf so that he no longer had to deal with the individual who had made him feel very judged and misunderstood. When relations also broke down with the appointed Deputy all negotiations were carried out by Karen which alleviated some of the stress for Pat and Charlie.

Karen’s challenge to the attitudes Charlie encountered from some health and social care professionals meant that his wishes were respected and that, in spite of them not necessarily understanding his decisions, they were respected.

Karen and Pat

Karen and Pat

Charlie’s cancer returned shortly after he had begun to slowly eat solid food again and he was faced with a terminal diagnosis. Sadly, he passed away in December 2015.

Charlie’s wife Pat says, “Our advocate, Karen, helped with such a lot. She used to speak up to the County Council for me, because I didn’t want to get into another argument. She helped Charlie to get to his hospital appointments on time. She’d meet him in Poole to make sure he arrived. I’d have been lost if it wasn’t for Karen.”

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You can read more stories about the power of independent advocacy support for older people affected by cancer in Facing Cancer Together which can be accessed and downloaded here

 

 

 

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Watch our for our forthcoming publication of volunteer stories. It’s called Time: Our Gift To You. It’ll be available to read and download very soon.

 

 

 

 

Marie McWilliams, OPAAL


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Our first wedding…

In today’s blog we celebrate a wedding, courtesy of Angela Jones, advocate with Cancer, Older People and Advocacy programme partner, Age Connects Cardiff and the Vale:

Mr Davies and Mrs Geasley are a couple who have been receiving some support from the Cancer, Older People and Advocacy team in relation to organising their finances, as sadly Mr Davies has terminal prostate cancer and his affairs needed sorting out to safeguard his partner’s future. 

We were delighted as part of the support we provided, to be able to assist in the organising of their wedding! A first for the Cardiff & Vale Cancer, Older People and Advocacy project! 

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A truly lovely day where family and friends were able to spend a joyous afternoon helping the newlyweds Mr & Mrs Davies to celebrate their marriage and enjoy some quality time together, whilst he was receiving treatment in a local hospice.  Marie Curie Hospice were marvelous in facilitating the wedding and even the press were on hand to highlight the couple’s happiness.

 UntitledAn afternoon that meant so much to many people, and helped secure some happy memories, and as part of the Cancer, Older People and Advocacy project I am privileged to have been allowed to also have been part of the organising of this special event. 

Angela Jones, Age Connects, Cardiff & the Vale


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Often patients have no-one or family are too closely involved and frightened themselves..

Many thanks to Sue from Knowsley Pensioners Advocacy Information Service (KPAIS) for today’s very personal account of a cancer diagnosis:

When I started work, as Administrator on our Cancer, Older People And Advocacy project in 2014, never did I imagine I could end as a possible service user!

In April last year, after a routine mammogram, I was diagnosed with breast cancer.  To say your world turns upside down is an understatement!  A lumpectomy and course of radiotherapy followed fairly quickly afterwards.

Sue

Sue

Immediately, after the diagnosis, I actually felt a sense of relief. During that interim period, your imagination plays havoc with you and you imagine all sorts of horrid possibilities.  But apart from them saying ‘we got it all wrong Sue’, the prognosis I received was most likely the best I could have hoped for. However, my partner was devastated – he’d lost his wife to breast cancer many years ago. But he came up trumps and became my ‘brick’ throughout my journey.

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I had a supportive partner and family around me – someone to confide my fears in and to accompany me to the many hospital appointments but it made me realise the importance of the Cancer, Older People And Advocacy project, having someone there just for you, to speak up for you, sort things out for you, to talk to when you’re frightened, listen to what the professionals are saying.  Often patients have no-one or family are too closely involved and frightened themselves. An independent Advocate can make all the difference.

Sue, KPAIS