Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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The complex interplay of practical, physical and mental factors affecting patient experience

Today Kathleen Gillett of Dorset Macmillan Advocacy considers the barriers preventing older people affected by cancer accessing the help they need:

We explore the physical, emotional and attitudinal barriers that older people may face to speaking up for themselves in a case study about ‘Stan’ during our volunteer induction.  In the case study Stan is given his cancer diagnosis and goes home alone without being offered any further sources of support or information.   Stan’s story is part of the OPAAL Cancer, Older People and Advocacy national training pack for peer volunteer advocates.  Stan is an archetype but in considering his story we put ourselves in the shoes of an older person facing cancer alone.At our most recent meeting for practising advocates we also considered a case study, this time a real one.  Jo Lee, Senior Advocate and Coordinator, outlined the situation of advocacy partner ‘Kevin’. Kevin had got in touch with Dorset Macmillan Advocacy himself after seeing a Macmillan TV advert and then searching the internet for local support. Jo gave a brief overview of Kevin’s medical history, the advocacy issues that he identified at the first assessment and the issues that subsequently presented or were identified by her during that assessment.

A discussion ensued about potential courses of action and then Jo explained what had actually happened.  The ethos of our service meant we were guided by the wishes of the advocacy partner at all times. There was a successful outcome in our having swiftly obtaining a grant and arranging the electrical upgrade and shower installation.  There remained other ongoing and unresolved issues.  At this point Jo ‘unmasked’ the volunteer advocate who was partnered with Kevin and we were able to question him more deeply.

Why had Kevin become disengaged from his healthcare team and been missing his outpatient appointments?

Kevin had longstanding depression, he lived alone with no family in the UK.  He was no longer employed owing to an alcohol problem which might have been linked to pressure at work. His lifestyle meant that he would often watch TV all night and sleep most of the day. Effects of surgery meant that it was extremely difficult for him to make himself understood on the telephone. Fatigue was affecting his mobility and he found public transport to attend appointments very inconvenient. His nutrition was not as good as it could be and he had continuing pain.

The outpatient appointments that Kevin was sent were invariably early in the morning.  Kevin had his letters well organised in a file and knew when the appointments were but did not get up in time to go.  Kevin was in contact with his GP surgery but always seemed to be seen by a different doctor so did not experience any continuity in his primary care.

So we discovered a complex interplay of practical, physical and mental factors affecting Kevin’s ‘patient experience’ and his ability to benefit from the healthcare on offer.

Kevin and his advocate enjoyed an afternoon visit to the seaside once the initial issues were resolved.  It was a rare outing from the flat that was not about medical appointments for Kevin and an opportunity to get to know Kevin as a person for his advocate. The partnership continues and steps are being taken to investigate Kevin’s ongoing pain issues.

Health professionals are dependent upon patients engaging with them.  The barriers to engagement that patients have will sometimes be outside of the scope of their role. Kevin’s advocate has worked with him to resolve the issue that was concerning him most, has coordinated his care in and outside hospital and paved the way for him to reengage with his healthcare team.

Kathleen Gillett, Dorset Macmillan Advocacy


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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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Do we expect too much of our doctors?

Today, Dorset Macmillan Advocacy‘s Coordinator Jen Rimmer considers patient – Doctor communication and how advocacy might help:

Working as a cancer advocates, we witness the communication between patients and their doctors all the time. When that goes well, the outcome is good for everyone involved; but when it doesn’t the effects can be truly distressing.

In her lecture ‘The Right Stuff: How Do We Make Moral Choices? Professor Gwen Adshead of Gresham College attempts to examine a central issue in patient doctor communication and it made for interesting listening.

Professor Adshead asks her audience to consider that doctors must consider not only what CAN be but also what SHOULD be done when making decisions about treatment. Previously a good clinical decision was equated with a good ethical one but this is no longer the case.

From a purely clinical perspective the path ahead can seem obvious– she gives the example of a heart failing due to lack of blood – but the complexities of the patient’s own unique personal and social values that inform their wishes should be considered. Things get even more complex when considering the more emotionally challenging aspects of healthcare (i.e. end of life care, decisions to refuse or discontinue treatment) or where an individual’s capacity is compromised.

Gwen Adshead

Although philosophy is taught at medical schools to support our doctors to make the inevitable ethical or moral decisions they will face, Adshead reports that one of the most common complaints aimed at medics is still “that they do not listen to the lived experience of ‘the patient’, or let the patient’s ‘voice’ be present and important”.

But it is reasonable to expect our doctors to be confident to make well informed, ethical decisions in every case? She asks, “whether it is just and fair to expect a group of people who are chosen for cognitive intelligence and intellectual skills in exam passing to become morally superior individuals?”

Is this where advocacy can offer most value? Helping the patient’s voice to be heard also has the secondary effect of supporting the doctor in their clinical role.

Advocates spend time with their partners and gain an understanding of that person beyond their illness. Can we expect a doctor to be able to glean and process enough information to make the best ethical decision for that individual within the 4 walls of their consulting room?

Adshead describes how a person’s decision making processes are affected by the past, the present dilemma and even their views and beliefs about the future. Often this is not obvious to an onlooker or even to the person themselves. Having an independent advocate can help unpick some of this complexity. Discussions take place in a neutral space allowing freedom to explore thoughts and feelings and work out what is right for them.

No matter what our life experience, there will be situations where we find ourselves in uncharted territory and struggling to navigate. As Adshead states, “vulnerability and neediness are not indicators of low status or even disability; they are aspects of a person’s identity that are part of the human transactions that are essential to social life.”

Advocacy recognises this and can offer the support to gain the best outcomes for all involved.

Dr Gwen Adshead is Visiting Gresham Professor of Psychiatry and currently consultant forensic psychiatrist at Ravenswood House. Prior to this post, she worked at Broadmoor Hospital from 1996, first as Consultant Forensic Psychiatrist, and then as a Consultant in Forensic Psychotherapy.

This lecture is part of a series The Right Stuff: Ethics and Moral Psychology and is available online here: https://www.gresham.ac.uk/lectures-and-events/the-right-stuff-how-do-we-make-moral-choices

Jen Rimmer, Dorset Macmillan Advocacy


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Emotional support needs are growing

What information and support needs matter most to people affected by cancer? Today Kathleen Gillett of Dorset Macmillan Advocacy, (DMA) tells us about changing needs and a greater requirement for emotional support:

Cancer Information and Support Services (CISS) are changing – at least that is the finding of a recent study of the Macmillan CISS which has involved a partnership with the Mental Health Foundation.  A workshop at last autumn’s Macmillan Professionals Conference presented the findings of research into the role of provision of information and support.  Macmillan CISS services are very varied with some operated by teams of staff and volunteers in large purpose built facilities, often on hospital sites, and others provided by a single part time worker.

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

The trend has been for people affected by cancer to be less in need of information and more in need of emotional support. A YouGov survey found that 83% of patients said that ‘being listened to’ is the most important thing.  If people are seeking more emotional support how are the CISS services reflecting this change and how are the service providers (staff and volunteers) themselves enabled to give this support without a negative impact on themselves?  Answers to these points continue to be developed by a working group of Information Managers within Macmillan.

Kathleen Gillett

Kathleen Gillett

Discussions during the workshop revealed a range of interpretations as to what constitutes emotional support and how to offer it.  A weekly coffee morning style drop in could offer low level psychological support in the view of one participant from a community palliative care team.  Ensuring that ‘all the patients have my phone number’ was seen by a nurse as being a way of providing emotional support. Another participant noted that patients with identified needs may sometimes decline a referral to psychological support because of unfamiliarity with the term and fear of the word ‘psychological’.

I made sure to explain to the participants of my discussion group the way in which peer volunteer advocacy can provide low level and ongoing emotional support. Not only can advocacy partners ventilate on occasion and be sure of being listened to but they can build a trusting relationship over time with their volunteer and know that they will not be judged as they share their worries and feelings.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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The system is impossibly difficult to navigate..

Kathleen Gillett of Dorset Macmillan Advocacy (DMA) tells us about the acknowledgement that someone is needed to act as the “glue in the system”:

At the 2016 Macmillan Professionals national conference which I attended last autumn Fran Woodard, Executive Director of Policy and Impact, Macmillan Cancer Support, spoke about personal experience of cancer in her family and said that the system is impossibly difficult to navigate as treatment gets more complex and people are living with more co-morbidities.  Her welcome address was about workforce. She said there is a need for a focus on coordination, navigation and support with one person who is the ‘glue in the system’.

prof-conf-2016-logo

A new role has been trialled in some parts of the country titled Macmillan Support Worker and a number of these posts will be funded by Macmillan in Dorset over the coming year.  Support Workers will be based in hospital Trusts alongside clinical staff and there will be some flexibility for each Trust to define their role and which cancer pathways they will support.

During break time I spoke with Simon Philips, Executive Director of Strategy and Performance, Macmillan Cancer Support, about how the advocacy service might mesh with the new Support Worker roles in Dorset. I am hopeful that the Support Workers will have a remit to know about what support is available in the voluntary and community sector.  We will offer them an opportunity to meet the peer volunteer advocates and hear directly about the difference advocacy makes to older people and carers.

Simon Phillips Executive Director of Strategy and Performance MCS and Kathleen Gillett DMA

Simon Philips and Kathleen Gillett attempt a selfie

Simon asked me about volunteer retention and whether we had any problems keeping volunteers. I was glad to be able to tell him that we still have on the team several of the volunteers we recruited for our pilot phase in 2012.  The size of our volunteer team is growing every year because despite a few volunteers retiring or going on to other roles such as hospital governor the majority are staying because they are so passionately committed to their roles.  They always arrive for their informal interview with a high level of motivation but once they are trained and ‘matched’ with an adovacy partner that motivation only increases as they see the real difference they are making to people’s lives. No two advocacy partnerships are the same and so the volunteers tackle the challenges that each new case brings with great energy.  They frequently tell us of the emotional rewards that they gain from the role.

As a service we benefit enormously from retaining a team of trained peer volunteer advocates that has increasing experience. In fact at our most recent volunteer networking forum at Help and Care my colleague Jo Lee and I were completely left out of most of the discussion while new and more seasoned advocates got to grips with a case study.  Could peer volunteer advocates work closely with the new Support Workers to be ‘the glue in the system’ that Fran would like to see?

Can you see peer advocates as part of the answer? Let us know what you think.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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Face to face support has the most impact

What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:

There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.

Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics.  In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.

Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more.  She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact.  She believes that the best services and support need to be local and need to understand the needs of the local population.

The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.

2 Kaths for the price of one - Kath Curley & Kathleen Gillett

Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy

Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’  This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.

The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to;  and 24% respond HNA.

I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be.  Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey.  At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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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.