Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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’.

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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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I was first interested in the role because my own family have been affected by cancer

Today, Susan Chrisp from AgeUK Northumberland introduces herself:

I’ve recently joined Age UK Northumberland as the Case Support Officer working on the Cancer, Older People and Advocacy Project.  I was first interested in the role because my own family have been affected by cancer and I understand how important it is for people who have cancer and their families to be supported during this difficult time.

Susan

Susan

I was really pleased when I was offered the job at Age UK Northumberland and  I currently work one day per week at Age UK and my role involves supporting the Project Manager and Project  Team to deliver the Project.  

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My background is in teaching, mainly working with people who are least engaged in education and I also work on a Project which helps older people combat loneliness and social isolation.  By working on the Cancer and Older Peoples’ Advocacy Project I can use my background and knowledge to contribute positively in Northumberland.

Susan Chrisp, AgeUK Northumberland


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The other “C” word

Juanita Williams of Sandwell Cancer Older People and Advocacy (SCOPA) project is thinking “Christmas”:

I have to admit I am a massive fan of the Christmas period. For me it’s all about friends and family and getting together having fun. Having said that I am not averse to giving and receiving presents particularly if they are given with love.

Imagine how delighted I was to hear from one our Local Cancer Champions Board members, Paul Litchfield, last week to tell me about some Christmas hampers that were being distributed by Macmillan Cancer Support from one of their partners Poundland.

The Partnership with Macmillan Cancer Support and Poundland started in May 2009 originally for one year only. Following the success of Year one where the £100k target was smashed to raise £180k and following a staff vote, the partnership continued into Year two. Each year (sometime between January and March) Macmillan go through the staff vote process and have won this each time. It was then recommended that Poundland remain supporting Macmillan until they had achieved £1 million. This was reached in March 2014 and it was then decided that the partnership would continue.

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They are now into the eighth year (9th by May 2017) and are on a drive to crack £3 million by the end of 2016. Macmillan Cancer Support recently received a huge donation from the sales of carrier bags (£672k). Poundland Staff have also taken part in numerous fundraising events including London Marathon, National 3 Peaks, Land’s End to John O’Groats, Dragon Boat races and a couple are hoping to do Mount Kilimanjaro in 2017. Poundland suppliers are always keen to support (especially with Christmas hampers) and with sales promotions around World’s Biggest Coffee Morning time in September.

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Paul was contacted by Lesia at Macmillan as she had a number of Christmas hampers to donate to his patients at the Queen Elizabeth Hospital in Birmingham.  Paul is a valued member of our Local Cancer Champions Board and knows very well the amazing work our volunteers do with their partners here at Sandwell Advocacy on the Sandwell Cancer Older People and Advocacy project so when he realised he would have a number of surplus hampers he asked if it would be possible for us to distribute the remaining hampers to Sandwell Cancer Older People and Advocacy partners.

After a few phone calls, Lesia confirmed it would be appropriate for us to share the hampers and we made arrangements to go over and collect them.  We have a new volunteer David, who to date has not been matched with anyone.  He is chomping at the bit to get started and was really happy to help with the collection and delivery of hampers.

Juanita

Juanita

Imagine the delight when our volunteers delivered the hampers to their partners.  They were full of all kinds of items from tea towels to Santa hats, chocolate bars to chewy sweets and crisps to candles. One of our partners is nursing her husband back to health as he has recently lost over a stone in weight.  She commented that the tins of soups and chocolates would certainly go some way to fattening him up for Christmas!

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It’s fair to say there were a few tears of joy shed in Sandwell! The Sandwell Cancer Older People and Advocacy team would like to take this opportunity to wish you all a merry Christmas and thank all of the staff and customers at Poundland for their kindness and generosity to people who are affected by cancer. Let’s hope they break the £3m target and continue this amazing show of generosity.

Juanita Williams, Volunteer coordinator.


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Facing Cancer Together: we’re demonstrating the power of independent advocacy

We’re really excited today to announce the publication, in partnership with Macmillan Cancer Support, of our latest collection of older people’s cancer advocacy stories entitled Facing Cancer Together.

In 2014 we published Every Step of the Way, a set of patient stories which illustrated the need – and value – of peer advocacy services for older people living with cancer. In this, our second publication, we bring together a further twelve stories of overcoming struggle, loss and anxiety, illustrating a new reality of what older people living with cancer can and should experience.

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But these stories also speak to a broader societal truth, and contradict the common narrative that the pressure from an ageing population with increasingly complex needs is overwhelming our health and social care system. At the heart of that narrative is a prejudice that older people are somehow too needy, too frail, too dependent and a burden the rest of society is expected to carry. This kind of prejudice robs older people of voice, choice and control. Advocacy – such as in the stories contained in Facing Cancer Together – seeks to return them.

When we read stories like these, we aren’t just reading about the experiences of one older person with cancer; we’re also being gifted rich insight on the big challenges facing policymakers, commissioners and practitioners, such as how to deliver high quality, compassionate, person centred care that enables people to be equal partners in their care; and how to tackle marginalisation, social exclusion and uncertainty; and how to manage the impact of cancer
on family, or emotional health, or housing.

Those challenges are for us all, regardless of age, and the methods of addressing these challenges, by investing in peer advocacy and support, greater community engagement and creating the motivations of staff to involve patients in their own care have a net benefit for all of society.

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Stories are powerful not least because they have the capacity to tell us something about ourselves.
The twelve stories in Facing Cancer Together represent the wide range of experience that our advocacy programme
has encountered across 1500 plus cases over the past five years.

 

We hope that they most of all resonate as examples of the actual support available to provide reassurance, companionship, dignity and, most importantly of voice, choice and control.

We want to thank all of those who were willing to share their stories with us, and the many advocates involved in
the programme.

Jagtar Dhanda, Head of Inclusion Macmillan Cancer Support & Kath Parson Chief Executive OPAAL


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..faced with a cancer diagnosis, feelings of isolation and confusion are only magnified..

Karen Renner, who has recently taken up post as Volunteer Coordinator at programme partner AgeUK Northumberland, gives us an insight into why delivering the Cancer, Older People and Advocacy programme is so important in Northumberland:

I started working as the Volunteer Coordinator on the Macmillan Cancer Advocacy Programme with Age UK Northumberland in September.

I have worked with volunteers in various roles in the past but I am new to advocacy.

I am passionate about the project.  As Macmillan say, ‘no one should face cancer alone’ but sadly, in the case of older people this can be all too true. Over one million older people haven’t spoken to a friend, neighbour or family member for over a month. This is sad enough but faced with a cancer diagnosis, feelings of isolation and confusion are only magnified. That’s where our project comes in and can assist in ensuring that voices are heard, informed decisions taken and quality of life maintained.

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Even those fortunate to have the support of loved ones can feel lonely.  It is not unusual for older people to keep their concerns to themselves: they don’t want to trouble anyone and they don’t ‘want to be a burden’.  An advocate can bridge this ‘gap’.

Working in Northumberland provides its own unique challenges and rewards.  The county has vast rural areas with pockets of small communities that don’t have the ready access that more urban counties have to services and professionals. Older people are typically traditional, proud individuals who like to go about their daily lives with the minimum of fuss. That’s why the project is so important.  One in three of us will be diagnosed with cancer at some stage of our lives and everyone should have support at that time.

Karen Renner

Karen Renner

I am fortunate to be working in a small team of dedicated, enthusiastic people who all feel the same way.  We are working towards the vision of OPAAL: that is, the provision of high quality independent advocacy. Our volunteers will be the key to achieving this.

Karen Renner, Age UK Northumberland/Macmillan Volunteer Coordinator