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.

Advertisement

One Man’s Experience Touching the Nation

Today Jen Rimmer from Dorset Macmillan Advocacy (Dorset Advocacy) tells us about the inspirational Steve Hewlett:

Steve Hewlett’s recent interviews on Radio 4’s PM programme about his experience of cancer have been widely acclaimed. Steve is a writer, broadcaster and media consultant – he is also the editor of Radio 4’s Media Show and was diagnosed with oesophageal cancer in March 2016.

From the outset Steve understood that his treatment was always going to be about extending lifespan rather than curative and Steve has been open and frank about his feelings and experiences both with his family, colleagues and the nation!

As a seasoned journalist, maybe it comes as second nature to him to research and report on his cancer experience but the resultant articles and particularly the interviews with PM’s Eddie Mair have provoked a strong response in those that have heard them with listeners reporting things like remaining sitting in their cars on their driveways to hear the interviews in their entirety. Others have commented on the positive effect of hearing a man (or men as Steve’s 3 grown sons are also interviewed on one occasion) discuss his feelings so openly.

Steve in his cold cap during chemo

From the outset, Steve’s experience has been characterised by choices. Initially choosing the best hospital and treatment and, latterly investigating the possibility of participating in clinical trials.

Faced with a terminal diagnosis and potentially a short window of opportunity (he was told that, left untreated, he would lose the ability to eat or drink within 8-10 weeks) Steve describes himself as being “reduced to tears” but the inefficiencies of the NHS administrative process in securing appointments.

At his very first appointment at his local hospital, Steve describes being seen by a Registrar who suggested a treatment regime but made no mention of an additional drug that Steve had been expected to be offered based on his own research. So Steve politely mentioned it. Leaving the room, a brief corridor discussion between Registrar and Consultant led to the Registrar returning and offering to include the additional drug. On questioning the Registrar agreed that research does suggest that, although patients may tolerate the treatment regime less well, the additional drug provides a 10% improvement in response. Steve comments wryly that 10% seems a lot more significant when faced with a prognosis like his but his main point here is that he felt aggrieved not to have been offered the choice. Unsurprisingly this hospital was not in the end Steve’s choice for his treatment, opting instead to attend the Royal Marsden in London.

The Macmillan Cancer Nurse Specialist present during one interview underlined the importance of taking a second person with you to appointments not least for emotional support but also to be a second pair of ears. Steve agreed that this was great advice but wondered how his 80 year old mother would cope with this process if he found it so hard. “Would she have been able to access the information, would she have been able to get on and off the phone chasing her appointments and ultimately challenge the doctors? How many people just go along with it all passively?”

Here we see an educated, articulated and self-advocating individual describe his experience of navigating the cancer pathway and struggling. As advocates we traditionally support those less able to have their voices heard but Steve’s testimony makes the case for cancer advocacy clear. Even when health care professionals are doing their very best, many of us would find advocacy support invaluable if faced with a difficult diagnosis.

Find Steve’s interviews here on the BBC’s iplayer: http://www.bbc.co.uk/programmes/p03m4q5s/episodes/downloads

Follow Steve on Twitter: @steve_hewlett

Jen Rimmer, Dorset Advocacy

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 kept me going”

Today we hear from Helen Vernon, advocate at programme partner Sefton Pensioners’ Advocacy Centre about Peter, one of the older people affected by cancer she has supported:

Peter referred himself to the Cancer Older People and Advocacy project after a diagnosis of cancer in June 2015. He had recently been told he was palliative.  He had spent 16 months in hospital with a collapsed lung.  Peter had moved in 2014 but regretted the decision due to some issues with the housing association. 

Peter had discovered that there was an electrical cupboard/water tank next to his flat.  His bedroom wall was on the other side of this cupboard and he found his sleep was severely disturbed.  We looked into the option of rehousing but Peter felt that since his diagnosis was terminal he didn’t want to spend the time he had left on a waiting list or moving house. Instead we asked that remedial work be carried out to alleviate the problem.

I negotiated with the housing association who had put in a request for the job to be completed, but it had been delayed because a surveyor hadn’t been to the flat.  The housing association actioned the job immediately.  I then continued to liaise with the housing association to make sure the job took place and that Peter was satisfied.  

In addition to this I contacted the Department of Work and Pensions to ensure that Attendance Allowance had been started and I explained to him when the payments would take place.

Peter’s family all live abroad and he felt strongly that they should be allowed to live their lives without worrying about him.  He spoke to me at length about his life and his feelings about the cancer. 

When the case was closed I asked Peter what he had thought about the advocacy process.   He said “(Advocacy) gave me a lot of hope that things would improve and they did improve, it (advocacy) kept me going”.

Helen Vernon

I recently contacted Peter again and he has asked me to revisit him as there are now some issues around his hospital care.  He would like me to write to the hospital on his behalf and to attend appointments with him.  A new case will bring new challenges as his health is declining, but with advocacy support Peter’s wishes will be represented and his voice heard.

Helen Vernon, advocate, Sefton Pensioners’ Advocacy Centre

We too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves

Today’s post is a really thoughtful piece from Emily Brown, Volunteer Manager at Dorset Advocacy, part of the Dorset Macmillan Advocacy partnership:

It is a sad truth that the people we support at Dorset Macmillan Advocacy have been diagnosed with cancer or are caring for their loved one who have cancer.  It is not unusual then that we come into contact with people who have experienced a great deal of loss in their lives or may experience loss during the course of the advocacy partnership. We, as advocates, often find that we are supporting people though some of the most difficult times in their lives and so it is not surprising therefore that we find ourselves personally affected by their circumstances.  This is particularly true of our Macmillan Advocates as they themselves have had experience of cancer, and so are likely to recognise parallels at times, with those people they support.  As well as supporting people who are bereaved we too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves. 

One of the coordinators on our Macmillan advocacy project felt that inviting volunteers at Dorset Advocacy to come together and share their experiences and feelings on the subject of bereavement might help us to recognise these emotionally difficult times and use them to identify ways of protecting and looking after ourselves.

Initially it was thought that this would be specifically for Dorset Macmillan peer advocates, but through the course of discussions about the training we found that the issues raised were likely to affect all of those volunteers who support vulnerable people across the county and that paid advocates too could benefit greatly from this training, so we decided that it should be opened up a wider group at Dorset Advocacy.

Kate Woodhouse (trained bereavement counsellor) facilitated this training on a sweltering hot summer’s day in late July and a dozen or so of us crammed in to the sauna that was Dorset Advocacy’s training room.  There was a mixture of advocates from our volunteer base and paid advocates, all of whom work/volunteer for Dorset Advocacy projects. We spent some time chatting over lunch and sharing ideas and experiences before we reorganised ourselves and sat in a circle.  This was a no-barriers style training and so we were not behind tables with note pads: we were sitting opposite our colleagues, ready to listen and to share.  Kate ensured that we felt safe within this space and asked us to be considerate and respectful to those who spoke as well as those who chose not to.

Despite the heat it felt as though those who attended were comfortable enough to explore the sensitive subject of bereavement/loss and what it meant to them.  We took turns to choose and present objects that represented our own experiences of loss.  Many individuals in the group used these objects as a means through which to explain a loss they had experienced and reflect upon it.

We were also encouraged to relate personal experiences, worries, anxieties and difficulties to marbles and add them to a jug of water prompting us to consider how we as people can only cope with so much before we run out of capacity. We explored ways that we, as individuals, can look after and protect ourselves alongside offering support to others so as to ensure that we are in a position to give support.

What this training highlighted to me was the importance of having a free and safe space to enable advocates to speak honestly and openly about their experiences.  All of the people at the training had different experiences and had been affected differently by them.  We must remember this and ensure that those people who are offering support and sharing the weight of worries and emotions with others are, in turn, able to share theirs and are encouraged to take time and recognise when to focus attentions on themselves.

Emily Brown, Volunteer Manager, Dorset Advocacy

“My whole cancer experience was being turned around”

Judith Pearson from Brighton & Hove Impetus describes her experience of becoming a Cancer Advocate:

I was diagnosed with breast cancer in 2013 and as my treatment was not too invasive I consider myself to be extremely lucky. Having said that, cancer has had a massive impact on my life; I have found that the emotional impact of the diagnosis continues. So much so, that earlier this year I was signed off work with anxiety and depression. I knew I had been struggling since my diagnosis but felt I just needed to ‘pull myself together’. I subsequently made the decision not to return to paid work for the time being.

At the time of my diagnosis and treatment I had a strong sense of wanting there to be a reason for cancer barging into my life unannounced – I couldn’t really explain it better than that. When I saw the advert for volunteer cancer advocates I knew immediately that this was what I wanted to do. I was signed off work at the time and I recall that as I was filling out the application form somehow my whole cancer experience was being turned around. It was almost like the flicking of a switch from negative to positive.

So far, I haven’t looked back.

Being accepted to do the training at Impetus was hugely exciting – meeting other people with their own cancer stories and talking about cancer in a much wider sense i.e. not just breast cancer was immensely interesting. I felt I was learning so much but also beginning to realise just how I could use my own knowledge, experience and skills in such a different way – to support others affected by cancer.

Judith Pearson

Being matched with my first client was exciting – I was keen to start. In preparation for my first meeting I did a bit of research on the internet – just some background information – and I found I was enjoying this new challenge in my life. Finding out and learning new things seemed especially compelling and I can feel that I am already looking forward to the prospect of working with more clients.

Cycling off to meet my client for the first time was a little daunting however my worry was short lived as he was a pleasure to talk to. We were able to discuss the information I had researched and he was delighted that I had already drafted a letter; I was getting things moving.

I am delighted to be involved with Impetus and cancer advocacy- not only am I helping others affected by cancer but they are also helping me.

Judith Pearson, Volunteer Advocate

To contact Macmillan Impetus Cancer Advocacy Service phone 01273 737888 or email canceradvocacy@bh-impetus.org

View our webpage here

The value of what we’re doing

Today I took part in a live online discussion run by The Guardian. The topic was the emotional and psychological impact of cancer. The panel included health professionals, representatives from the voluntary sector like me and most importantly, people who have been diagnosed with cancer.

It was great to hear so much enthusiasm for better support services for those affected by cancer. As the discussion progressed I came to a fresh understanding that several of the things we do as part and parcel of our project are vitally important.

We provide peer support; those affected by cancer are best placed to support others affected by cancer since they can really understand the emotional and psychological wringer that cancer can be. One contributor noted: “personal experience of cancer gives insights and a common platform for understanding.”

 

Another aspect of our project is independence, we provide an independent peer advocate;  someone who will always listen without judging and who can empower the older person affected by cancer to share thoughts and feelings they might not want to share with those closest to them. Our peer advocates can help relieve a feeling of intense isolation and loneliness even for those who have lots of family support. A second contributor said: “loneliness and isolation many stem from going through such an intense experience – both physically and emotionally – that differs from most of the people around. Of course family members and close friends are also going through an unbelievably intense experience – but it is their own and is unique to them. Add in the way in which family members will often work so hard to protect/shield each other from their own distress – and it can feel lonely even in a most loving environment”

 

Thirdly, our development of a new National Health Professionals Board will enable us to find ways to reach the health professionals who may not always be as understanding of the emotional and psychological needs of their patients and their families as they might be. One lady who joined in the discussion described how her daughter in her twenties was diagnosed with leukaemia. She said: “I have come across some most wonderful, caring medical professional but have also met quite a few who really should not be working in the NHS and who lack sympathy and understanding for what we are going through.”

Being involved in this discussion reinforced my belief that what we are doing is making a real difference to real people. I’d like to extend my personal thanks to all of our wonderful peer advocates who do such fabulous things, unpaid but not unappreciated.

Marie McWilliams, OPAAL