Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Aneesah’s tale

On World Cancer Day Aneesah, a professional advocate from ICANN (Independent Community Advocacy Network North), gives us her take on delivering older people’s cancer advocacy:

My experience as working as an advocate on the Cancer, Older People and Advocacy project has varied vastly. Through my work I have found that one of the greatest obstacles both with professionals working in the cancer field and the clients themselves, was initially actually understanding what “advocacy” is. Although in general terms most clients and professionals alike understand that an advocate can effectively aid in putting across opinions, in many other respects I found that lines can be frequently blurred.

The ICANN team with Aneesah on the left

It can sometimes be unclear as to what an advocate can and cannot do. An example of this occurred when I was attending an appointment with a client and they were given various treatment options, which they appeared to be confused about. Once I relayed the information to the client put forward from the consultant, the client then felt that it was I as the advocate that needed to make the best decision on her behalf! I had to encourage and empower her, to explore the options by using me as a sounding board, and then to talk through together what she wanted to do.

These situations can as an advocate be challenging but upon reflection I also now acknowledge that it is important as an advocate to be able to voice concerns to medical professionals. With the same client at a subsequent appointment, when it was obvious to me that she was not taking it what was being said, I asked if we could take a break and this gave me the opportunity to fully discuss in depth the pro and cons of the various treatments that she was being offered.

This ensured that the client was able to make a clearer conscious choice and in turn made them feel more at ease as they became more fully aware of what to expect. It also meant that at future appointments we were able to prepare in advance, questions she wanted to ask and things we needed to discuss, which in turn gave her more confidence about being in control of her cancer journey.

Similarly as an advocate I found that on some occasions health professionals viewed my presence when attending with clients with some suspicion. This can sometimes be intimidating for the professionals involved as I have been under the impression that maybe they felt that I was there to act as an independent witness to ascertain any faults or failure of medical procedures on their part. However, once they become familiar with me and how advocacy can facilitate the client in a positive way they too began to see the benefits of having an advocacy service for their patients . The most prominent example being that many of the medical professionals involved in cancer treatment do not physically have the time or capacity to thoroughly go through the finer details with all their patients. With advocacy support they then have returning patients who are more confident and comfortable, and less likely to miss medical appointments, as they are more aware of what tests or procedures they are attending for, what future plans are, and what to expect from their patient experience.

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Many clients are understandably confused or feel disorientated particularly when it has not been long since they have been diagnosed. They are also given a considerable amount of information which initially may be difficult to not only understand but also to accept. Being an advocate has given me the opportunity to facilitate people in focusing what they would actually like to do regarding treatment or finding out about other services that would improve their quality of life.

As an advocate I have realised that it is often easy to concentrate only on the client who has been diagnosed with cancer. I have realised that cancer can have an equally profound and devastating effect not just on the patient but the family and friends around them also, and have seen first-hand the value of support to carers

More recently I have had a client that has been diagnosed with cancer three times in the last ten years. Although she herself was going through emotional turmoil it was equally difficult for her partner to come to terms with a situation that had been ongoing for such a long length of time. In this situation advocacy was required by both. They each needed someone to listen to them as they went through the same journey encountering different emotions from two perspectives.

I would consider that my role as an advocate has been beneficial, particularly to those who are vulnerable and most isolated. I have also become aware though that even those clients who are fortunate to have an extended network of family and friends can still feel alone in their personal journey. I have come across situations where clients have felt more at ease in voicing their anxieties to me as I am someone who is independent and non- judgemental. Often people feel that there are things they cannot discuss with those closest to them due to fear, awkwardness, embarrassment, and sometimes pressure to feel positive and optimistic when they are actually not feeling these things. One of the benefits of advocacy to the client is to offload and explore these concerns.

Aneesah Bana, Advocate, ICANN

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‘Ask every question in the book’

Recently I tried to show how advocacy support can be  preventative by describing how, at every stage of the cancer journey, a patient and their advocate can consider aspects of their treatment and care by looking forward to the short, mid or long term and thinking through how they would like that stage to be and what plans they could be making already to work towards  it.

To help me visualise this I plotted the people that we have supported to date during the pilot phase of our project along an imaginary line representing the cancer journey.  I realised then that people had a need to look back as well as looking forward.

One person that had called us for support after seeing our leaflet in his local surgery said initially that he wished to talk to someone mainly about how his secondary cancer would progress, he felt ‘in the dark’.  It transpired that he had many unanswered questions about the treatment follow up that he had received in the past and the return of his cancer.  These questions were causing very strong emotions which were hard to deal with while feeling very fatigued.

I saw how the ability to look back and feel assured that everything possible has been done and that you have made the best choices that you could for yourself regarding treatment and care would underpin the ability to look forward and plan for the next stage or for the end of life care that you want.

It is not only patients but carers too who should be able to look back at any stage and feel satisfied that they have done the best that they could do.   Actress Maureen Lipman whose husband Jack Rosenthal died of myeloma in 2004 said in an interview for AgeUK’s The Wireless broadcast on 14 December that if she could live one year of her life again it would be the last year of his life.  It would not be a happy year but she would deal with his illness in a different way.  Above all she would find out more information about the illness. She would ‘find out everything and ask every question in the book’.  She would have him treated closer to home, she would question his treatment and ask ‘holistically what is right for this person?

Maureen Lipman

Maureen Lipman

Our independent advocates work with their advocacy partner, be they the person with cancer or the carer, to help them make informed choices all along the cancer journey.  The advocate can listen, be a witness, and enable them to explore their feelings and express emotions as they arise.  I believe that advocacy support can help people to look back without regret.

Kathleen Gillett

Dorset Cancer Advocacy


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Are Health Professionals advocates for their patients?

Undoubtedly they are and Professor Sir Michael Marmot tells us why in his forward to the March 2013 report from UCL Institute of Health Equity: Working for Health Equity: The Role of Health Professionals, ‘action on the social determinants of health should be a core part of health professionals’ business, as it improves clinical outcomes, and saves money and time in the longer term.  But, most persuasively, taking action to reduce health inequalities is a matter of social justice.’

He continues: ‘The medical and health professions are well placed to take action on the social determinants of health – they are trusted, expert, committed, and great powerful advocates.’

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Interestingly some health professionals working in the field of cancer have told us that because they advocate on behalf of their patients they cannot see a need for our service.  Once we have explained the role of independent peer advocacy they can see how it complements and strengthens the work that they are doing.

Volunteer peer advocates offer their support in the community and can spend time with people in their own home.  The volunteer, as a lay person, is on an equal footing with the person they support – they are working in partnership.  The volunteer can stay the journey with their partner and accompany them to hospital if needed, during different phases of treatment.  The volunteer can provide printed information on treatment and care options and then put the pamphlet aside, discuss the information and revisit the discussion until their partner feels comfortable with it and clear on their options.  Above all the volunteer has time, time to listen while their partner works through their feelings and prepares themselves for the next step.

Kathleen Gillett, Dorset Cancer Advocacy