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.

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 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.

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

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.”

 

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

 

 

 

 

 

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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Over time I was able to build a trusting and secure relationship with Valerie

Aneesah, advocate at our delivery partner ICANN, tells us about Valerie (not her real name) and her issues around divulging that she is HIV:

I received a referral for Valerie who had used us as a service in our previous advocacy work. She was diagnosed with breast cancer but was in the very early stages of recovery. Therefore, she was extremely emotional when we initially met. Because I already had an established relationship in our previous advocacy service Valerie felt comfortable to talk to me openly about her feelings and concerns.

Valerie’s ethnicity and cultural background played an important role in how she felt and how she mentally perceived how she should be handling her medical problems. She’s from African descent and although she was living with her sister she was of the strong opinion that she needed to be emotionally strong and expressing her true feelings and worries was a great sign of weakness. Yet equally it was clear to me that these vulnerabilities and insecurities were taking a very big toll on her and was having a far deeper rooted impact on her mental health.

These feelings of guilt and shame were exasperated as she had also been diagnosed as HIV positive some years ago. Due to Valerie’s concerns she felt that this was another medical condition that needed to be keep hidden. What came through in our conversations was that although fortunately she had a very good and trusting relationship with her consultant the diagnosis of breast cancer meant that she had to constantly disclose the fact that she was HIV positive to other medical health professionals, particularly during the period she was undergoing chemotherapy as the requirement was to have regular blood count checks. Because she was highly conscious and anxious about her diagnosis of HIV coming to light, she found the whole treatment procedure very tense and traumatic.

By the time she established contact with me she had many unexplored and suppressed worries. Her main reason for contact was an approaching benefits assessment. Valerie felt she was forced into a situation where she would have no choice but to discuss medical issues she was highly uncomfortable with.

In our meetings which followed over a couple of weeks I was able to talk and reassure her that she should not feel shame or guilt towards her condition. As time went on we met regularly and Valerie was able to make the vital step of being able to talk about her condition without supressing her true feelings. I was able to reassure her that for the purpose of the benefit assessment it was vital to disclose both of her medical conditions in depth as her eligibility would depend on this.

Aneesah

Over time I was able to build a trusting and secure relationship with Valerie and this really helped me to advocate on her behalf. Consequently when we were in the assessment she was able to depend on me to talk on her behalf on occasions when she found things difficult to explain to the assessor or when she became uncomfortable.

As a result, Valerie was successful in receiving the benefit and the experience allowed her to recognise that professionals in general work using the ethic and principles of being impartial and non-judgmental. The experience clearly demonstrated to her that although she felt that by disclosing her medical conditions she would be judged and perceived in a negative and possibly prejudiced way, this in reality was clearly not the case.

As a result of this experience and advocacy support we were then able to arrange specialist focused counselling services as a more long term plan to deal with her anxieties.

This particular experience demonstrated to me and to Valerie that by working on her emotional insecurities and coming to terms with her health condition it was going to enable her to consciously make the effort to attend future appointments in relation to regular health checks at the hospital. Ultimately advocacy support empowered her to be in control of her health, which hopefully now will contribute to improving her quality of life.

Advocacy on the edge

Today Rhonda Oliver of Cancer, Older People and Advocacy delivery partner Advocacy in Barnet tells us of her newfound understanding of advocacy:

I have to declare straight away that I am new to advocacy. I joined Advocacy in Barnet in May 2016 and since then have had more of a learning roller coaster than a learning curve!

Advocacy – it’s a funny old word and it has become clear that many people, including health professionals, do not really understand what it means. It has a faint whiff of Rumpole of the Bailey – something legal and a bit scary – but of course it is nothing of the sort and that is a big challenge we all face: to communicate better what we do. I guess this was a factor in the advocacy service in Oxfordshire re-branding itself as “Getting Heard”? Is this something we should all be considering I wonder or should we stick to our “advocacy” guns? Getting heard is only part of the advocacy story. At Advocacy in Barnet we say to the people we help “You talk, we listen, life changes” and it is life-changing aspects of our work that I find so inspiring.

Rhonda Oliver

The simple definition of advocacy is the act of speaking on the behalf of or in support of another person, place, or thing. So far so easy, but what I had not realised was that it would encompass so many dark and threatening sides of the human condition. All human behaviour is represented from the highest altruism to the meanest type of exploitation of vulnerable people and downright cruelty.

Some of the cases I have heard about in the last couple of months would make your hair curl – financial abuse, people being excluded from their own homes by greedy relatives, people being abused and bullied or ignored. I had no idea when I joined of the tough cases that would cross our desks.

This why I have developed so much respect and admiration for our volunteer advocates – nothing phases them. They remain professional, competent and non-judgemental at all times. Their steely determination to do the best for the people they help is amazing and nothing seems to deter them from achieving the most positive outcomes.

Volunteer advocates everywhere – I salute you.

Rhonda Oliver, Project Manager, Advocacy in Barnet

Being a Dorset Macmillan Advocate

Dorset Macmillan Advocacy volunteer advocate Janet Lister describes her role and what it is she does to support older people affected by cancer:

I’ve taken on many volunteer roles since retiring, some of them more satisfying than others. But becoming an advocacy volunteer has turned out to be the most worthwhile volunteer role that I have ever been asked to play.
 
It has called upon a lifetime of personal experiences, of being faced with a diagnosis of cancer, of supporting family members and friends through a variety of difficult cancer treatments, of working with health care professionals caring for cancer patients in a hospital setting, all of which I expected would be important in my advocacy role.

Janet from Dorset Macmillan Advocacy

 
But I have been overwhelmed by what I had not anticipated – the  privilege of being allowed in to the private lives of my advocacy partners, to be told the most intimate details of their lives, their family and personal relationships, and to become a true support and ally in their difficult journey.
 
I find that the most important need of our partners is to talk – they need to express their feelings, fears, doubts, and worries to a friendly, non-partisan, non judgemental person.
 
I have found that these initial conversations may, in the beginning, raise minor concerns that seem easy to fix. But often, hidden away in what may seem harmless conversation, there are deeper concerns. Sometimes you have to intuit these conflicts, mentioned in passing, and feel confident to dig a little deeper.  In this way you can help the person to reflect on their treatment choices, and to prepare for the many challenges that living with, and surviving, a cancer diagnosis brings
 
Of course, they may be situations where the prognosis is not so happy. Here also you can fill an important role in helping the patient and the family to come to terms with the decisions that might have to be made. Here, as with all discussions you have, it is important not to become too involved, or to bring your own feelings and opinions into the discussions.

It all sounds very difficult but I assure you, it is all worthwhile and you will get the gratitude of the patient, their friends and family in the end. To be allowed into what becomes a very intimate circle at such is a difficult time is a rare privilege which gives me much satisfaction.