Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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The complex interplay of practical, physical and mental factors affecting patient experience

Today Kathleen Gillett of Dorset Macmillan Advocacy considers the barriers preventing older people affected by cancer accessing the help they need:

We explore the physical, emotional and attitudinal barriers that older people may face to speaking up for themselves in a case study about ‘Stan’ during our volunteer induction.  In the case study Stan is given his cancer diagnosis and goes home alone without being offered any further sources of support or information.   Stan’s story is part of the OPAAL Cancer, Older People and Advocacy national training pack for peer volunteer advocates.  Stan is an archetype but in considering his story we put ourselves in the shoes of an older person facing cancer alone.At our most recent meeting for practising advocates we also considered a case study, this time a real one.  Jo Lee, Senior Advocate and Coordinator, outlined the situation of advocacy partner ‘Kevin’. Kevin had got in touch with Dorset Macmillan Advocacy himself after seeing a Macmillan TV advert and then searching the internet for local support. Jo gave a brief overview of Kevin’s medical history, the advocacy issues that he identified at the first assessment and the issues that subsequently presented or were identified by her during that assessment.

A discussion ensued about potential courses of action and then Jo explained what had actually happened.  The ethos of our service meant we were guided by the wishes of the advocacy partner at all times. There was a successful outcome in our having swiftly obtaining a grant and arranging the electrical upgrade and shower installation.  There remained other ongoing and unresolved issues.  At this point Jo ‘unmasked’ the volunteer advocate who was partnered with Kevin and we were able to question him more deeply.

Why had Kevin become disengaged from his healthcare team and been missing his outpatient appointments?

Kevin had longstanding depression, he lived alone with no family in the UK.  He was no longer employed owing to an alcohol problem which might have been linked to pressure at work. His lifestyle meant that he would often watch TV all night and sleep most of the day. Effects of surgery meant that it was extremely difficult for him to make himself understood on the telephone. Fatigue was affecting his mobility and he found public transport to attend appointments very inconvenient. His nutrition was not as good as it could be and he had continuing pain.

The outpatient appointments that Kevin was sent were invariably early in the morning.  Kevin had his letters well organised in a file and knew when the appointments were but did not get up in time to go.  Kevin was in contact with his GP surgery but always seemed to be seen by a different doctor so did not experience any continuity in his primary care.

So we discovered a complex interplay of practical, physical and mental factors affecting Kevin’s ‘patient experience’ and his ability to benefit from the healthcare on offer.

Kevin and his advocate enjoyed an afternoon visit to the seaside once the initial issues were resolved.  It was a rare outing from the flat that was not about medical appointments for Kevin and an opportunity to get to know Kevin as a person for his advocate. The partnership continues and steps are being taken to investigate Kevin’s ongoing pain issues.

Health professionals are dependent upon patients engaging with them.  The barriers to engagement that patients have will sometimes be outside of the scope of their role. Kevin’s advocate has worked with him to resolve the issue that was concerning him most, has coordinated his care in and outside hospital and paved the way for him to reengage with his healthcare team.

Kathleen Gillett, Dorset Macmillan Advocacy


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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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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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A day in the life of……..a peer volunteer advocate

Our thanks to Jill Wallace, who is a peer volunteer advocate with programme partner Advocacy in Barnet, for the following enlightening blog post:

So irritating, I have woken up so early as usual; the habit of waking as if I am going to work never seems to stop.  Priority is to feed my cat Izzie and have my first of many cups of tea and read my book before the newspaper is delivered.

Jill

Jill

There is an advocacy support meeting today which I am looking forward to as there will be quite a few new volunteers attending. I think it is such a great opportunity for the new volunteers to meet other advocates and have the opportunity to listen to the variety of work we carry out. We have a speaker at each monthly meeting and try to book other organisations working in Barnet; the information can be so useful to people that turn to Advocacy in Barnet (AiB) for support.

Very interesting support meeting ; it was very rewarding chatting to the new volunteers during our coffee break to hear that they felt relieved and happy at the level of support available to them at all times.  Today’s speaker will be of great interest to some of our clients; a family business that can offer bespoke meals delivered as and when required at a very reasonable price.

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I have arranged an initial visit accompanied by Georgia, a trainee Social Worker working with AiB as part of her training. As the meeting was from 10 – 12 am we have plenty of time for a nice lunch and chat together before our visit at 2pm at Finchley Memorial Hospital. So far I am really enjoying my day! Spent lunch with Georgia discussing how much she had enjoyed and learned from working with AiB. Hearing how this had helped her as she was coming to the end of her training was very enlightening.

We visited our client Mrs A, age 90, at Finchley Memorial Hospital.  After explaining the support AiB could offer, and obtaining signed authority to act on her behalf, Mrs A spoke of the concerns she had regarding where she would live once discharged from hospital as she was aware that she was physically unable to live independently. Happily we were able to point out that Mrs A did have choices and advocacy would be happy to liaise with all the professionals involved to ensure that her opinions and decisions are listened to.  We discussed with Mrs. A the action we would be taking on her behalf to ensure they met with her approval.

Georgia had taken notes during the meeting which ended at 3.15pm; we spent 15 minutes discussing Mrs  A’s case.

Arrived home just after 4pm having had a very varied day, bit tired but pleased.

Jill Wallace, peer volunteer advocate, Advocacy in Barnet


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Mike was terrified of meeting with his doctors, Bob helped build his confidence and gave a voice to his fears

Today’s blog post comes from Ang Broadbridge, OPAAL’s Deputy CEO talking about our latest Older People’s Cancer Voices film.

The COPA programme is complemented by our Department of Health funded Older People’s Cancer Voices project; it’s about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision.  I’ve been leading this project for 18 months and we’ve tried to give older people access to a wide range of tools to support them to share their experiences.  I’m really excited about the films we are working on with older people.  Bringing their stories to life and seeing advocacy partnerships on screen draws a focus to the many benefits of advocacy, highlights the impact of cancer for older people and shows the strength of those partnerships.

We work with vulnerable client groups and this has been our first foray into filming one to one with advocates and their advocacy partners.  We wanted to be brave about telling these stories and not shy away from difficult topics, working alongside older people to bring these issues to light sensitively.

Mike’s Story, recently released on our 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.

Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer.  He describes feeling terrified and disillusioned, sometimes suicidal.  Bob was someone he could talk to, someone who really knew cancer, Mike says he feels it is essential “to talk to someone who has had similar experiences”.  Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis.

Bob helped Mike with a wide range of issues; helping to organise his paperwork including identifying pensions, speaking to HMRC and helping him to complete his tax form, encouraging him in his progress overcoming alcoholism, encouraging him to take steps to pick up the telephone and return to the local project who were supporting him with his recovery after he lapsed following his cancer diagnosis, reassuring him about side effects of treatment, ensuring health professionals were made aware that he could feel claustrophobic in smaller spaces, and at first representing his wishes and needs, later encouraging him to have the confidence to do these things for himself next time.

Bob reflects on how the objective of the partnership, to help Mike to stand on his own two feet and express his wishes, has been achieved and he feels he has learned a lot from Mike too, and the many other advocacy partners he has supported in his role.

You can find out more about Older People’s Cancer Voices by following the hashtag #mycanceradvocacystory on twitter, and by following OPAAL’s YouTube channel.