Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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The transition from professional to volunteer which brings a wealth of expertise

The volunteers who have shared their stories in Time: Our Gift to You come from all walks of life but I felt it was significant that several were retired Health or Social Care Professionals.   I wanted to know more about what motivates them to train as an advocate so I asked Mike Goodman, a newly retired Clinical Nurse Specialist who joined Dorset Macmillan Advocacy last year, why he volunteers and what he feels former Health Professionals in particular can bring to the role. Kathleen Gillett, Coordinator, Dorset Macmillan Advocacy

‘I was interested in becoming an advocate because, despite being retired, I still have an interest in helping people live with and recover from a diagnosis of cancer. After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire. The transition from professional to volunteer is a tricky one and it can be rather easy to slip back into a formal or professional approach to a situation rather than acting and speaking as a lay person – or simply imagining being the patient. However empathetic professionals think they are, because they have been trained/educated and because they are busy they quickly slip into “professional” mode and forget just what it is like being a confused, slightly scared, often lonely recipient of health care services.

Mike Goodman

I am sure advocates can be effective whether they have been cancer patients themselves, or have been the carer of someone with cancer or have been health care professionals. All those experiences will enable you to be a help and support. They would all bring different skills and abilities to the many and varied problems that the cancer partner is grappling with. Probably the greatest skill lies with the Macmillan Senior Advocate or Volunteer Coordinator in choosing which advocate to link up with each new partner.

Health Care professionals do have the ability to understand how the wheels turn in a hospital department or what a GP really needs to know in order to change the experience for a patient who is in a crisis. They will understand that it is hard to get something done on a Friday afternoon when most departments in a hospital are winding down for the weekend or that a referral between teams will have to go through an MDT meeting before a decision is made. Explaining that there is no simple blood test or screening process for some cancers comes as a shock to some people in the community who are reading the tabloids and grasping at every tiny news item that has the word cancer in its headline.

Retired professionals can play an important role in advocacy but, at the end of the day, it is that human touch, that word of encouragement, that listening ear that every person affected by cancer needs and wants and that is a role that every advocate seeks to fulfil.’

Mike Goodman, retired CNS.

Our thanks to Mike for sharing his thoughts.


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Patty Doran: research and evidence to support advocacy services

Evidence of the impact of small, community-based services is often hard to convincingly portray.  We can tell stories about the people who have used our services.  These stories generally generate positive responses about how “obviously” a good service is being provided.  However, when it comes to securing on-going funding for services, more robust evidence is required.

This is the situation I was in a few years back when I was a Macmillan Information and Support Service manager of an innovative service based in Manchester’s community libraries.  We were lucky, after 3 years of Macmillan funding, I was able to secure another 3 years of funding from The Big Lottery.  My experience of running the service, and the endless task of proving its worth, spurred me on to complete a MSc in Social Change at The University of Manchester.  I enjoyed the experience of returning to study, and now I am researching full-time towards a PhD focussing on the social support needs of older cancer patients.

Through my research I have maintained contact with Macmillan and established new links with OPAAL and the Cancer, Older People and Advocacy project.  The work being carried out by the Cancer, Older People and Advocacy delivery partners directly parallels with my theories about the support needs of older cancer patients.  The stories that are shared through this blog highlight the important and valued role that the cancer advocates are playing.

Patty

Patty

I am now in the position to support the evaluation of the Cancer, Older People and Advocacy project by conducting independent research into the impact of advocates on the experiences of older cancer patients.  I am hoping to travel to several of the Cancer, Older People and Advocacy delivery services to carry out interviews with older cancer patients who have used the services, hear their stories, and draw together an analysis of the impact of advocacy.

So far, I have interviewed two people who have used the ICANN service.  Recruitment of participants for this research involves the support of the advocacy organisations involved, and I am very grateful for the support from Janet Cullingford from ICANN for her support in arranging the first two interviews.  Recruitment is dependent on the organisations’ advocates and workers, and requires negotiation and in some cases persuasion on their behalf to get participants on board.  However, the potential benefits are high.  Hearing the stories of older people affected by cancer who have used an advocacy service provides a contrast to the more common ‘expert patients’ used in many other qualitative studies.

Patty with Janet from ICANN

Patty with Janet from ICANN

Listening to the stories of older cancer patients provides important insight into personal experiences of having cancer treatment.  From these experiences we can learn about how the principals of shared decision-making are applied in treating cancer, if indeed they are.  Initial findings suggest that from the patient’s perspective there are limited decisions to be made, and health professionals are trusted and relied upon to make the treatment decisions.

Support during the cancer journey is highly appreciated, especially post-treatment.  One older person said that “without [my advocate’s] support I don’t think I would have got through it”.

However, more interviews are needed to explore these initial findings further. I am now hoping to recruit several more older cancer patients to be interviewed. For more information, contact Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester,  patty.doran@postgrad.manchester.ac.uk

Patty Doran


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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

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.