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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Driver, moral support or something more?

Kathleen Gillett from Dorset Macmillan Advocacy looks at what an advocate can and will do to support an older person affected by cancer:

When I explained to someone recently that peer volunteer advocates could accompany the person they are supporting to medical appointments they remarked ‘Like a befriender then?’ ‘Yes and no’, I replied.

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The advocate, in addition to walking in the door with the patient (and carer) can do any or all of the following:

  • Ensure the person has remembered the appointment, has satisfactory transport arrangements and knows exactly where to go
  • Ensure the person knows what the appointment is for and who they are going to see
  • Ensure the person has thought about the previous appointment and prepared for this one by thinking about what they would like to get out of it and writing down any questions they would like to ask
  • Prompt the person to ask questions they have prepared and, if needed, ask the questions on the patient’s behalf
  • Monitor the person’s understanding of any terminology used and ask them if they would like fuller explanations
  • If the person is asked to make a decision about treatment options check whether they feel ready to do so and if not how much time is available
  • Take notes during the appointment to make a written record for the person to refer back to later
  • Make sure the person is clear at the end of the appointment what the next step will be
  • Have a cup of tea while waiting for transport home
  • Later on run through what happened at the appointment to see how the person feels it went, whether they felt comfortable and were treated with dignity and respect
  • Discuss any treatment and care options and their implications and whether more clinical information is needed
  • Agree with the person if any new and immediate needs have arisen and what they would like to do next.

I was reminded of reading Ken Worpole’s obituary of the hospice architect, Ian Clarke. Clarke ‘believed passionately that hospitals for the dying should be welcoming, reassuring places and he spent his career designing uplifting spaces for palliative care’.  Clarke wrote of healthcare environments; ‘Why can we not get away from the ubiquitous ‘no-place’ hospital corridors that we are so used to?’

 

I agree that environment is important and have visited well designed hospices and cancer centres that clearly enhance wellbeing. However, for me when I go for the first time to a new place or have an appointment of significance in a familiar place, feeling well prepared and having a trusted person to go with me is equally important. This, coupled with the friendliness and manner of the staff that I meet there, will make a bigger impact on me than the surroundings in isolation.

Kathleen Gillett, Dorset Macmillan Advocacy


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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.”

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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