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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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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‘Health literacy’ and ‘Patient activation’

Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the first of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:

I recently read the terms ‘health literacy’ and ‘patient activation’ in a report by Macmillan Cancer Support and found them useful labels for ideas that had been floating about in my head. 

Let’s talk about it: Improving information and support describes the role of health literacy and patient activation in a chapter on Improved Communication.

‘Poor reading and comprehension skills are not always taken into account when providing accessible information and support, with serious implications for health inequalities and outcomes. While the problem of functional literacy remains a huge challenge, it is possible to be fully literate and yet health illiterate. Health literacy concerns the ability to read, understand and act on health information, as well as navigate the health and social care system.’

Practically, low health literacy can impact on patients in a number of ways. These include their ability to follow treatment plans, seek support, participate in consultations, understand performance data, understand the implications of provided information, and communicate their own values and needs. Individuals vary in their level of patient activation – the measure of a person’s skills, confidence and knowledge to manage their own health.’

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It helps me to relate theory to practice and I thought of two people that we supported in the early days of Dorset Macmillan Advocacy.

The first advocacy partner described herself as having been ‘a poor scholar’. She disliked written information and kept hospital paperwork out of sight. You could say her level of general literacy was low.  Her health literacy or her ability to understand her condition, her treatment plan and its implications risked being affected by her general literacy.  She knew that verbal processing of information through discussion worked much better for her.  She had been able to ask a health professional for a translation into plain English ‘Does that mean…?’  With her advocate she was able to discuss her condition and the implication of treatment options at several key stages of her journey. She said that having an advocate also boosted her confidence.

The second advocacy partner sought to increase his level of health literacy. He undertook extensive internet research into his condition and travelled to see a specialist.  He also had a very strong level of patient activation.  In other words he was strongly motivated to be actively involved in clinical treatment decisions and make lifestyle changes that he judged to be beneficial to his situation.  However his responsibilities as a carer presented a physical barrier that also put him under huge emotional strain.  His advocate worked with him to put arrangements in place that permitted him to move forward with his own treatment.

The two people described had different cancers, different personal circumstances and different personalities but both benefited from advocacy support which is always tailored to each individual’s needs and situation.

Kathleen Gillett, Dorset Macmillan Advocacy


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“everyone my client met treated her with dignity and respect”

Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:

I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.

Susan

Susan

The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.    

I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.

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By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.

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My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.

I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.  

Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)


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What a coincidence!

Our colleagues and programme partners Staffs & Wolves Cancer Advocacy project have just published the post below on their own blog and Kath Curley project manager has kindly agreed to share it with us:

At last week’s Cancer Older People and Advocacy Programme Project Management Group Meeting Kathleen Gillett, from Dorset Macmillan Advocacy,  gave a presentation on Macmillan’s Recovery Package.

Recovery Package DiagramThe Recovery Package is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

The Recovery Package is made up of the following elements:

  • Holistic Needs Assessment (HNA) and care planning.
  • Treatment Summary completed at the end of each acute treatment phase 
  • Cancer Care Review completed by the GP or practice nurse to discuss the person’s needs.
  • An education and support event such as Health and Well-being Clinics.

Today, Collette Cooper and I met with Sarah Gorton, Macmillan Cancer Survivorship Project Manager, based at Royal Stoke Hospital, who has taken up a 2 year Macmillan funded project. Sarah is working with the CNSs, across Royal Stoke and County Hospitals, for 4 cancer sites:

  1. Head and Neck
  2. Brain
  3. Primary Bone
  4. Gynaecological  

to implement an electronic Holistic Needs Assessment (eHNA) within these clinics as an integral part of the Recovery Package.

We discussed with Sarah where advocacy fits within the Package and that Advocates compliment and support the work the CNSs are doing. We hope this will lead to greater partnership and collaborative working with the health professionals.

Good luck Sarah!

Kath Curley, Staffs and Wolves Cancer Advocacy and Support Project Manager.


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Coping with more than cancer

In today’s blog post Kathleen Gillett from Dorset Macmillan Advocacy looks at the issues facing older people affected by other long term conditions as well as cancer:

Coping with cancer is one thing, coping with cancer and one or more other long term condition is another. Peer advocates listen to the people they support to discover what matters most to them and may be surprised to find that having cancer can be the least of their worries.

At Dorset Macmillan Advocacy we have collected some information on the long term conditions and health problems that the people we are supporting are living with.  We have found that of 110 people referred to us for support in 2015 50 have at least one other long term condition, 26 have two conditions including drug and alcohol dependency issues and 7 have 3 conditions.  The conditions include sensory loss, diabetes, heart condition, memory problems, arthritis, MS, ME, epilepsy, hiatus hernia and mental health issues. Not everyone wants to disclose all their health issues and we have not in every case methodically recorded where this information has been given so I think it is safe to say that there are likely to be more issues than we actually know of.

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In fact 70% of people with cancer have one or more additional long term condition according to research carried out by Macmillan Cancer Support.  It’s clear that the situation for people with limited social support networks, such as older people, can be very difficult.  Independent advocacy services such as ours can be flexible and support people with their concerns when they are wider and more complex than the cancer diagnosis.

Health professionals are aware of the implications especially as regards treatment options for older people.  The British Geriatric Society has a special interest group (SIG) for Oncology which met for the first time last September and Kath Parson of OPAAL gave a presentation about the Cancer, Older People and Advocacy programme.  In a write-up of that event Dr Lucy Dumas said ‘Older patients with multiple medical co-morbidities and/or issues with care or coping at home represent a significant challenge when it comes to evaluating whether or not they will be able to tolerate potentially toxic therapies’.

Over the next year we hope to gather more information about the wider health issues of the people that we support. As well as asking for their feedback on the difference our service has made we may be able to gather their views on how their other conditions have impacted on their cancer patient experience.

Kathleen Gillett, Dorset Macmillan Advocacy


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Max Neill

Last week we heard the sad news that one of our Older People’s Cancer Voices steering group members passed away. OPAAL’s Ang Broadbridge shares her thoughts on a recent blog post of Max’s that struck a chord with the steering group:

I met Max Neill in the summer of last year at a Coalition for Collaborative Care event; Max was sitting at the same table as me and he shared with us copies of his one page profile during the break.  I’ve worked with one page profiles with adults with learning disabilities, and our Cancer Older People and Advocacy partners were also exploring them with Helen Sanderson Associates so I was interested to know more.  Max told me about his bowel cancer diagnosis and how his profile helped him express his wishes; it’s always good to get chatting with someone who ‘gets advocacy’ and so I followed him on twitter.

Some time later, when we came to look for representatives for our Older People’s Cancer Voices steering group, my colleague Janet Cullingford from I-CANN suggested Max.  I hadn’t made a connection between his role at Connect4Life being based in the same locality as I-CANN but was really pleased when our paths crossed again and he agreed to join us.

Although he didn’t manage to make a steering group meeting we kept in contact via social media and the telephone, Max signposted me to lots of great resources and kindly said that he’d be happy for us to share aspects of his story from his blog as part of our Older People’s Cancer Voices storytelling.

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I found that everyone I came into contact with who knew Max spoke very highly of him, and his generosity of spirit, so at our last steering group meeting in January his ears must have been burning because we were talking about his latest blog post which we’re sharing with you today.  This post appeared on Max’s blog at the end of December 2015:

Christmas in the Hospice

I didn’t expect to be waking up on Christmas morning in a hospice.

But my life’s like that now. The results of one scan can throw all my plans up in the air.
And the results of my last scan weren’t the best I could have hoped for.

I’m far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.

I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.

So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.

And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.

Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!

Christmas was lovely here.

It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.

As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.

Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.

I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of  ‘professionalism’ or for countless other persuasive reasons.

The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.

I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”.  I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!

I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of  CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”

Time with family. Time with the people special to me. That’s what I’m focussing on right now.

Our thoughts are with Max’s family and friends.