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.

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

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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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.

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.

Clinicians and Patients: Balancing the Conversation

Today Jen Rimmer, advocate from Dorset Macmillan Advocacy and Dorset Advocacy, looks at the barriers to patients being more involved in decisions affecting their care:

BBC Radio 4’s Inside Health (listen here: http://www.bbc.co.uk/programmes/b07vs2p0) reported on NHS Wales’ new initiative ‘Choosing Wisely’ which is attempting to challenge the general atmosphere that doctors know best and encourage patients to engage more actively in the decision making process around their tests and treatments.

Dr Paul Myers, Chair of the Academy of Medical Royal Colleges in Wales who is leading the new initiative was interviewed on the programme. He explained that the NHS is, “often too quick to offer patients treatments and interventions that don’t always benefit them and may even harm them…up to 10% of interventions in healthcare are inappropriate and perhaps even harmful”

To tackle this, patients are being encouraged to ask 4 key questions of their clinicians:

• What are my options?
• How likely is the treatment to benefit or harm me?
• Do I really need it?
• What can I do to help myself?

In tandem there is work going on to ensure that the clinicians are more receptive to patient questioning in an NHS culture dominated by time constraints and clinical decision making processes increasingly driven by guidelines and protocols.

Dr Myers describes findings that patients, “continually express that they’d like to be more involved in the decisions made about them” but at the same time many patients state that they have difficulties having conversations with their clinicians.

The Choosing Wisely initiative acknowledges that failing to understand patients’ needs and wants often leads to high levels of patient dissatisfaction and that spending time in the initial consultation listening and identifying the concerns, values and preferences of the patient pays dividends later down the line.

But what are the barriers to achieving this and how can these be addressed? Well for those of us who already work in healthcare advocacy, one useful strategy is clear!

Dr Margaret McCartney, a regular contributor to Inside Health, highlights some of the issues – time constraints in appointments and the problem in assuming that every patient is able to take in and process the information given to them in such a way as to reach an informed decision.

Jen Rimmer

As advocates, we see this all the time. Ensuring that a person with a known cognitive impairment or learning disability is supported to digest information and come to the decision that is right for them is a given but we also see usually assertive and self-advocating individuals floored in the face of important and stressful medical decision making processes. This can be due to the emotional and psychological shock they are feeling or simply being unfamiliar with the medical domain. Advocates have both the time and the skill to support patients to make decisions and, as we have seen here in Dorset, both cancer patients and clinicians report positive outcomes as a result of Independent Advocacy involvement before, after and at appointments.

It is great to see initiatives such as ‘Choosing Wisely’ and similar programmes are set to roll out across the UK later in 2016 but if the NHS fail to consider how Independent Advocacy could support this, they might be missing a trick!

Jen Rimmer, advocate, Dorset Advocacy & Dorset Macmillan Advocacy