Older People Living with Cancer

Peer advocates supporting older people affected by cancer

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Learning more about independent advocacy in Northumberland

In today’s blog post we hear from Karen Renner, volunteer coordinator at AgeUK Northumberland about a recent advocacy learning and development opportunity for volunteers and staff:

On the 28th February Age UK Northumberland hosted an advocacy training day which was funded as the result of a successful Macmillan Learning and Development Grant application.

The Cancer, Older People and Advocacy Project in Northumberland  was set up by Macmillan Cancer Support and Age UK Northumberland to provide one-to-one support, help and information for people over 50 and their families affected by cancer.  The programme is only available in certain parts of the country and Northumberland is fortunate to be one of these areas.

Val Ford leads the training session

Current and new cancer advocacy volunteers attended the training day as well as Age UK Northumberland staff.  Val Ford, Director of Training from SEAP which is one of the leading UK advocacy agencies delivered the training.  Val who was involved in both writing the original training package for the project and delivering it nationwide to front line Macmillan staff proved an excellent facilitator.

The course provided an understanding and awareness of what Independent Advocacy is and highlighted the principles which underpin good practice in advocacy.  Some of the challenges that can arise with Independent Advocacy were examined and the strategies that could be used to resolve these. 

A number of group activities supported the learning process including several case studies which also examined the various issues faced by older people needing advocacy assistance. 

Discussion over exploring professional boundaries proved of particular interest to both existing and new volunteers.  The dangers of not adhering to boundaries were examined as well as strategies to employ should a boundary be broken.

After a very thorough and engaging day, all those present felt that their knowledge of advocacy had increased.  New volunteers felt they were better equipped with both the knowledge to pursue an advocacy role and the skills to maintain an independent and client led relationship.  Those people already familiar with the project found the day both motivating and a useful reflection on what they had already learnt to date.

Looking to the future, the project in Northumberland continues to gather impetus.  With continued investment in the training of our outstanding volunteer workforce, older people diagnosed with cancer will have the understanding and support needed to make the decisions that will guide them through their journey.

Karen Renner, Volunteer Coordinator


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‘Just be with them in the unknown’

Kathleen Gillett from Cancer, Older People and Advocacy programme partner Dorset Macmillan Advocacy considers the relationship between the older person affected by cancer and their peer advocate:

Steven W. Thrasher writes from the heart in his opinion piece in the Guardian ‘Don’t tell cancer patients what they could be doing to cure themselves’.

He analyses why we have a natural tendency to try to give advice or at the very least to try to ‘say the right thing’ in difficult situations. Then he explains why we should not.

‘Talking at someone with cancer about what they should do, rather than being with them in a morass with no easy answers, is not you helping them’ argues Thrasher.

The relationship of a peer volunteer advocate with the person they are supporting (their ‘advocacy partner’) is not the same as the relationship between relatives or friends.   Relatives and friends may be asked for and may offer their opinions.  Advocates do not offer opinions or advice but they can listen and be present.   They can, as Thrasher writes, ‘Just be with them in the unknown’.

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In Dorset we have been fortunate to attract highly motivated volunteers.  We find during our informal interview that most of them have a fair idea what advocacy is about even if they were unfamiliar with the term itself.  During our induction training we see them gain a much deeper understanding while taking part in the discussions about the ethos of advocacy and examples of advocacy in practice.

To volunteer to be with someone ‘in the unknown’ is not an easy thing to do and it is the volunteers’ ability to empathise that gives them the determination to fulfil this difficult role.  ‘Would you like to make a difference?’ is a familiar term on volunteer recruitment material.  ‘Would you like to be with someone in ‘a morass with no easy answers’?’ is a phrase we would be unlikely to use on our recruitment posters but our volunteers are undoubtedly up to the challenge.

Kathleen Gillett, Dorset Macmillan Advocacy

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I became a peer advocate because having had cancer, I felt that I could be of help to other people.

Deb McGarrity, delivery partner AgeUK Northumberland’s paid advocate, gives us an insight into what it’s been like delivering the older people’s cancer advocacy service in Northumberland recently. In what is Volunteers Week, Deb also introduces us to Marion, an older person affected by cancer, who has become a peer volunteer advocate:


Since the end of last year the Age UK Northumberland Macmillan Cancer Advocacy and Older People project has steadily been receiving referrals, there have been 24 cases since December 2015.

Without a volunteer coordinator it has been a challenge to keep our volunteers engaged and supported, this has partly been achieved through a good relationship with local Macmillan who opened up their volunteer training schedule to our volunteers. Our volunteers have taken advantage of the Macmillan training by participating in training in Bereavement and Loss, Specialist Palliative Care, Cognitive Behavioural Therapy and Prostate Cancer.


Volunteers have also accompanied the paid advocate on visits and are slowly beginning to have their own cases. One volunteer, Marion Young has started working with a client who recently was given a terminal diagnosis. When I asked  how she feels about being part of the project, Marion responded by saying:

I became a peer advocate because having had cancer, I felt that I could be of help to other people. I am looking after my first client who has been given a terminal diagnosis. With the guidance of Deborah and the client’s permission I have written letters to the GP and Macmillan to support her with her request to be able to move nearer to her daughter. I am going with her to the hospice. I am meeting with her beforehand to note any questions that she has, giving her empowerment that enables her to understand what will happen.


Marion Young

From my own point of view it has been great being able to include the volunteers in client case work. Not only are we utilising their experience to help our clients but I too am learning from them which is extending my expertise and informing my practice. I can see too that the clients also really appreciate having someone to support them who has also been affected by cancer.

Deborah McGarrity, AgeUK Northuberland

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Guinea pigs in London!?

In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:

On the 16th and 17th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.


This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.

There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.

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At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.

Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.

It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!

Karen Pigott, Macmillan Project Coordinator, Dorset Advocacy


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‘Think carer!’ says Pat Vinycomb

Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital.  The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.

Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again.  In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no.  She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice.  She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.

It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel.  She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope.  Above all good communication from hospital staff and being kept up to date is important for carers.

L-R Pat Vinycomb, Ambassador - Carers UK and Marion Summers, volunteer advocate - Dorset Macmillan Advocacy

L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy

Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.

Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers.  Carers can be empowered by advocacy support to know their rights and feel more in control.  I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand.  After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.

During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers.  The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.

Kathleen Gillett, Dorset Macmillan Advocacy


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“I’m keen to get started”

Sandwell Advocacy’s Juanita Williams writes about recent training sessions for potential new volunteer advocates.

As Sandwell Advocacy’s Volunteer Co-ordinator I led our recent training sessions ably supported by the very experienced Paddy Elmore who volunteered his time to support me.

Juanita and Paddy

Juanita and Paddy

The volunteers all have experience of cancer in some form or another and come from a variety of backgrounds, each of them bringing a wealth of knowledge and experience to our sessions. They have working life experience of housing and care homes, nursing, social work, pensions and finance – all valuable assets to share with our group.

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Our wonderful new volunteers

The training covered what we do at Sandwell Advocacy: understanding advocacy, the role of an advocate, different types of advocacy, communication, confidentiality, boundaries, working with professionals, dilemmas, personal safety, lone working, case studies and scenarios; the majority of which was specifically related to cancer issues.

It took place over two days and proved interesting; whilst they had lots of life skills, their knowledge of advocacy was limited and this led to great conversation during the case studies and exercises as they considered their potential roles.  They have all confirmed they still wish to become advocates on the project even though they acknowledge it may not be an easy ride!  They are keen to support others on their cancer journey and want to use their experiences to ensure things go as smoothly as they possibly can.

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As referrals are now coming in, it won’t be long before they are matched with their partners and start making a real difference to the lives of older people affected by cancer.  We will be on hand to support them along the way and are currently planning further sessions to support them in the future.  The good news is that other volunteers are preparing to start their training as soon as times can be found to suit them.

One of our volunteers said she found the sessions “very informative and certainly gave me something to think about. The Macmillan literature will prove useful in the future, particularly the contacts and organisations. All in all I enjoyed it and am keen to get started.”

Juanita Williams

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Our First Training Session with our Peer Support Volunteer Advocates at Age Connects Cardiff & the Vale

Angela Jones and Joanne King of Cardiff Cancer, Older People & Advocacy project recently carried out their first training for volunteers. There were three volunteers who were very keen and engaged well with the subject matter and the trainers.


An evaluation form was handed out at the end of the second day and completed on site.


The evaluation form encompassed four questions that had a scale of 1-5 (1 being totally disagreed and 5 being totally agree). We are pleased to say that we scored 5 on all the questions which were:

  1. Found the course interesting and productive.
  2. The course has met my expectations.
  3. I felt encouraged and able to contribute.
  4. I am satisfied on how the course was run.


Joanne King on the left and Angela Jones on the right with the 3 new volunteers

Joanne, Margaret, Juliet, Karla and Angela

At the end the volunteers were invited to give general comments which included:

“Examining the various stages of the cancer journey was useful as everyone has a different experience.”

“Excellent in every way.”

“The information given was clear and well delivered and I was made to feel valued and supported.”

“The scenarios made me really think about how I would handle a particular situation.”

“Because I work it would have been better for me if the training was covered in one day.”

It is always difficult to gauge how a first training session will evolve and all of us are on a constant learning curve but it was a great experience for both trainers to be part of that process.

Laura Thomas, Age Connects Cardiff & the Vale

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Making a compelling and flexible offer to would-be volunteers

A discussion paper by The Commission on the Voluntary Sector and Ageing entitled “A better offer: The future of volunteering in an ageing society” looks at the current picture and future trends. The value to charities of volunteering by people over 50 is set to grow from £10bn to £15bn by 2020 according to the Royal Voluntary Service. But with a rise in the retirement age and increasing pressures on older people to help out the younger generations of their family there could be less volunteers available. So the benefits of volunteering need to outweigh the disadvantages.


The paper describes two key benefits as ‘the buzz’ or sense of well-being that volunteers get from their role and ‘learn and grow’ or the opportunity for personal development. The barriers to involvement.are identified as: time pressures; feeling exploited; and the image of volunteering. The authors argue that charities will need to make a compelling and flexible offer to would-be volunteers in the future.

Why have I told you this?  Is it because I fear that our advocacy service will fail to attract volunteers?  On the contrary. At Dorset Macmillan Advocacy we recently completed a round of volunteer recruitment.  Our most successful method has been a short paragraph about the aims of our service in the free, local community magazines that drop on people’s doormats.  This generates enquiries, exchange of information, further informal discussion followed by application and interviews for just over half of those that contact us.

At the informal interview we have started by asking ‘What interests you in being a peer volunteer advocate for older people affected by cancer?’  Immediately we hear the many reasons that motivated people to come and meet us to find out more:

‘I’ve been retired for a while, we have five children and I’m a very busy grandmother but I miss being part of team and I’m bored.’

 ‘I’m newly retired and I’ve been looking for volunteering opportunities for six months, I’ve started one already but this one really spoke to me.  After my own cancer experience I make the most of each day and my way of doing that is by doing an act of kindness every day.’

 ‘I’m semi-retired, I’m really busy with other voluntary activities but after being a carer for a family member with cancer I feel I have something more to give.’

The reasons may be different but a deep understanding of the need for advocacy for older people facing cancer is what every candidate has in common.  In addition there is a shared conviction that this is an important service.

We aim for the volunteers to have flexibility, some chose to take breaks between matches, some are happy to have more than one advocacy partner at a time,  some also take part in external events promoting our service, talk on the radio, distribute publicity, engage with local commissioners on our behalf.  All join us for ongoing training and networking with the volunteer team.

The nature of the service combined with the volunteers’ varied but highly personal motivation is what makes what we do compelling.  Add to that the flexibility offered by the role and volunteers will continue to come forward as, in my opinion, there could not be ‘a better offer’.


Kathleen Gillett, Project Coordinator, Dorset Macmillan Advocacy

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Successful Volunteer Recruitment Drive

Following on from the confirmation of Big Lottery Funding we launched a recruitment drive for willing volunteers. From one advert placed in a Carers Special Feature in the local newspaper we received 27 expressions of interest for all types of advocacy training. We managed not to scare most of them off and 14 have confirmed that they wanted to become Volunteer Advocates and 4 have decided that they want to share their own personal experience of cancer and be Peer Advocates.

We recently held 2 blocks of general advocacy training and the volunteers wanting to be Peer Advocates are in the process of doing the Macmillan online training and Cancer Advocacy training over the next 2 weeks.

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Volunteer Co-ordinator Margaret Lambert (Back row left) with some of our new Volunteers

Patricia Wallis is a cancer survivor herself and has recently cared for her sister who sadly passed away after a cancer diagnosis. “I want to be able to share my experience of caring for my sister through her end of life so that another older person affecting by cancer may have a better experience than my sister and my family had.” She added “Support from hospices for end of life at home, comes in too late and some of the medical profession talk in language which is not always easy to understand particularly when you are hearing news that knocks you for six. I am so looking forward to starting my new role volunteering at Sefton Pensioners’ Advocacy, the advert  really caught my attention and the training has been really interesting.”

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Patricia Wallis pictured on the right at her recent general advocacy training

Volunteer Co-ordinator Margaret Lambert added “It is really great to have all these committed and willing volunteers. We have been so impressed with the diverse experience of our new volunteers, from a retired medical doctor to a tennis coach who was a lines-woman at Wimbledon. It all makes for some really interesting stories”

Karen Pierce, Sefton Pensioners’ Advocacy

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OPAAL wins Sanofi UK Patient Group Bursary Gold Award

We are delighted to announce that Sanofi UK has awarded OPAAL the Gold Award in its 2014 Patient Group Bursary Scheme. The scheme supports initiatives across the UK that make a tangible difference to patient empowerment and education. By awarding a share of £50,000 to patient groups, the scheme aims to support organisations where promoting the needs and interests of patients is at the heart of their work.


The GOLD AWARD  of £25,000 will allow us to set up a Cancer Patient Train the Trainer Programme

We plan to offer a standalone Cancer Patient “Train the Trainer” programme. In essence we plan to recruit and train older people affected by cancer to become Trainers able to train both Healthcare professionals and social care professionals. The nature of the training to be delivered will be to raise awareness among these professionals of independent advocacy, what it is, what it is not, how it complements other forms of care and most importantly how it supports older people affected by cancer to better cope with their lives.

The Sanofi UK funding will enable us to raise the status of the patient voice to have a real impact on health and social care practice. There will be two referral pathways for prospective cancer patient volunteer trainers, from Macmillan’s Cancer Voices national volunteer database and from local volunteer referral pathways set up and managed by local Cancer, Older People and Advocacy delivery partners. OPAAL and her local partners Dorset Advocacy and Help and Care in Dorset, Beth Johnson Foundation in Staffordshire and Sefton Pensioners Advocacy Centre will recruit, train and supervise volunteer cancer patient trainers. Macmillan Cancer Support will adopt an information and advisory role for this project.


We’re very excited about this work which will complement the Cancer Older People and Advocacy project.

Baroness Neuberger DBE and Patient Group Bursary Scheme judge said:.”This year’s winners all demonstrated tremendous passion and commitment to the people they set out to support. The projects selected for bursary awards are all very different. However, whether it be improving advocacy for older cancer patients, establishing the first peer support network in the UK for people with TB or providing mentoring to develop local support groups for families affected by fundamental diseases, the judges strongly believe that all three projects have the potential to have a significant impact on the lives of patients and those who care for them. We wish the groups all the very best of luck with their projects.”

OPAAL’s Chief Executive Kath Parson said: “We are all absolutely delighted to be this years winners of the Sanofi UK Gold Award. This money will enable us to train older people affected by cancer to themselves become Trainers able to deliver advocacy training to local health and social care commissioners. We aim to improve commissioners knowledge and understanding of independent advocacy services by learning directly from service users.”

Dr Mark Toms, Medical Director of Sanofi UK and Ireland commented:“Advocacy groups play an important role in championing the needs of patients and Sanofi UK is committed to supporting groups who strive to improve care and empower patients through the Sanofi Patient Group Bursary Scheme. Now in its fourth consecutive year we still continue to be impressed by the passion and unrelenting tenacity of patient groups in delivering exceptional programmes that make a lasting difference to the lives of patients across the UK.”

Look out for further information as the project gets under way in the Autumn.

Marie McWilliams, OPAAL