Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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“Advocacy kept me going”

Today we hear from Helen Vernon, advocate at programme partner Sefton Pensioners’ Advocacy Centre about Peter, one of the older people affected by cancer she has supported:

Peter referred himself to the Cancer Older People and Advocacy project after a diagnosis of cancer in June 2015. He had recently been told he was palliative.  He had spent 16 months in hospital with a collapsed lung.  Peter had moved in 2014 but regretted the decision due to some issues with the housing association. 

Peter had discovered that there was an electrical cupboard/water tank next to his flat.  His bedroom wall was on the other side of this cupboard and he found his sleep was severely disturbed.  We looked into the option of rehousing but Peter felt that since his diagnosis was terminal he didn’t want to spend the time he had left on a waiting list or moving house. Instead we asked that remedial work be carried out to alleviate the problem.

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I negotiated with the housing association who had put in a request for the job to be completed, but it had been delayed because a surveyor hadn’t been to the flat.  The housing association actioned the job immediately.  I then continued to liaise with the housing association to make sure the job took place and that Peter was satisfied.  

In addition to this I contacted the Department of Work and Pensions to ensure that Attendance Allowance had been started and I explained to him when the payments would take place.

Peter’s family all live abroad and he felt strongly that they should be allowed to live their lives without worrying about him.  He spoke to me at length about his life and his feelings about the cancer. 

When the case was closed I asked Peter what he had thought about the advocacy process.   He said “(Advocacy) gave me a lot of hope that things would improve and they did improve, it (advocacy) kept me going”.

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Helen Vernon

I recently contacted Peter again and he has asked me to revisit him as there are now some issues around his hospital care.  He would like me to write to the hospital on his behalf and to attend appointments with him.  A new case will bring new challenges as his health is declining, but with advocacy support Peter’s wishes will be represented and his voice heard.

Helen Vernon, advocate, Sefton Pensioners’ Advocacy Centre


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We too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves

Today’s post is a really thoughtful piece from Emily Brown, Volunteer Manager at Dorset Advocacy, part of the Dorset Macmillan Advocacy partnership:

It is a sad truth that the people we support at Dorset Macmillan Advocacy have been diagnosed with cancer or are caring for their loved one who have cancer.  It is not unusual then that we come into contact with people who have experienced a great deal of loss in their lives or may experience loss during the course of the advocacy partnership. We, as advocates, often find that we are supporting people though some of the most difficult times in their lives and so it is not surprising therefore that we find ourselves personally affected by their circumstances.  This is particularly true of our Macmillan Advocates as they themselves have had experience of cancer, and so are likely to recognise parallels at times, with those people they support.  As well as supporting people who are bereaved we too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves. 

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One of the coordinators on our Macmillan advocacy project felt that inviting volunteers at Dorset Advocacy to come together and share their experiences and feelings on the subject of bereavement might help us to recognise these emotionally difficult times and use them to identify ways of protecting and looking after ourselves.

Initially it was thought that this would be specifically for Dorset Macmillan peer advocates, but through the course of discussions about the training we found that the issues raised were likely to affect all of those volunteers who support vulnerable people across the county and that paid advocates too could benefit greatly from this training, so we decided that it should be opened up a wider group at Dorset Advocacy.

Kate Woodhouse (trained bereavement counsellor) facilitated this training on a sweltering hot summer’s day in late July and a dozen or so of us crammed in to the sauna that was Dorset Advocacy’s training room.  There was a mixture of advocates from our volunteer base and paid advocates, all of whom work/volunteer for Dorset Advocacy projects. We spent some time chatting over lunch and sharing ideas and experiences before we reorganised ourselves and sat in a circle.  This was a no-barriers style training and so we were not behind tables with note pads: we were sitting opposite our colleagues, ready to listen and to share.  Kate ensured that we felt safe within this space and asked us to be considerate and respectful to those who spoke as well as those who chose not to.

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Despite the heat it felt as though those who attended were comfortable enough to explore the sensitive subject of bereavement/loss and what it meant to them.  We took turns to choose and present objects that represented our own experiences of loss.  Many individuals in the group used these objects as a means through which to explain a loss they had experienced and reflect upon it.

We were also encouraged to relate personal experiences, worries, anxieties and difficulties to marbles and add them to a jug of water prompting us to consider how we as people can only cope with so much before we run out of capacity. We explored ways that we, as individuals, can look after and protect ourselves alongside offering support to others so as to ensure that we are in a position to give support.

What this training highlighted to me was the importance of having a free and safe space to enable advocates to speak honestly and openly about their experiences.  All of the people at the training had different experiences and had been affected differently by them.  We must remember this and ensure that those people who are offering support and sharing the weight of worries and emotions with others are, in turn, able to share theirs and are encouraged to take time and recognise when to focus attentions on themselves.

Emily Brown, Volunteer Manager, Dorset Advocacy


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Advocacy on the edge

Today Rhonda Oliver of Cancer, Older People and Advocacy delivery partner Advocacy in Barnet tells us of her newfound understanding of advocacy:

I have to declare straight away that I am new to advocacy. I joined Advocacy in Barnet in May 2016 and since then have had more of a learning roller coaster than a learning curve!

barnet logoAdvocacy – it’s a funny old word and it has become clear that many people, including health professionals, do not really understand what it means. It has a faint whiff of Rumpole of the Bailey – something legal and a bit scary – but of course it is nothing of the sort and that is a big challenge we all face: to communicate better what we do. I guess this was a factor in the advocacy service in Oxfordshire re-branding itself as “Getting Heard”? Is this something we should all be considering I wonder or should we stick to our “advocacy” guns? Getting heard is only part of the advocacy story. At Advocacy in Barnet we say to the people we help “You talk, we listen, life changes” and it is life-changing aspects of our work that I find so inspiring.

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Rhonda Oliver

The simple definition of advocacy is the act of speaking on the behalf of or in support of another person, place, or thing. So far so easy, but what I had not realised was that it would encompass so many dark and threatening sides of the human condition. All human behaviour is represented from the highest altruism to the meanest type of exploitation of vulnerable people and downright cruelty.

Some of the cases I have heard about in the last couple of months would make your hair curl – financial abuse, people being excluded from their own homes by greedy relatives, people being abused and bullied or ignored. I had no idea when I joined of the tough cases that would cross our desks.

This why I have developed so much respect and admiration for our volunteer advocates – nothing phases them. They remain professional, competent and non-judgemental at all times. Their steely determination to do the best for the people they help is amazing and nothing seems to deter them from achieving the most positive outcomes.

Volunteer advocates everywhere – I salute you.

Rhonda Oliver, Project Manager, Advocacy in Barnet


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It has been great to rekindle connections with former health colleagues, with my new hat on!

Today we hear from Bec Hoare Getting Heard‘s (formerly Oxfordshire Advocacy) newest recruit:

I joined Getting Heard in Oxfordshire as coordinator for the Cancer Older People and Advocacy project  on 1st June this year. I took over from Julie, the previous coordinator, who had got the project up and running here, developed the team of volunteers and forged many links with health professionals locally – so she was a hard act to follow!

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My background is as a nurse, and I have worked primarily in the community and palliative care settings, followed most recently by a role with Age UK Oxfordshire. When I saw the advert for the post, it seemed to leap out at me as the obvious next step! And my knowledge of local health services and systems has undoubtedly been of great help with the ongoing promotion of the service as well as developing further the links made by Julie. It has been great to rekindle connections with former health colleagues, with my new hat on!

Bec Hoare

Bec

It is a wonderful project to be involved with. I find it truly inspiring working with the volunteers  who, due to their own often very challenging  experiences of cancer, wish to put that experience to positive use and help others.

The challenge remains to get the word out there about the service – which is universally positively received as people come to know about it – and to continue to increase the number of people we reach.

Bec Hoare, Cancer Older People & Advocacy coordinator, Getting Heard


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Friendships forged through advocacy

In today’s post, Valerie McGregor advocate at delivery partner Knowsley Pensioners’ Advocacy Information Service (KPAIS) ponders the relationships we build whilst delivering advocacy support:

Having recently revisited some of the cases of older people affected by cancer who received support through advocacy, it became apparent that not only did we have a professional relationship as advocate and client whilst dealing with their issues, but also that during their journey we had become friends.

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What I didn’t envisage was that through supporting them, I would get to know them so well. In so many cases I’ve learned about their lives from an early age, where they grew up and all about their families. I love to hear about and feel privileged to hear their stories, and how their cancer journey has affected them and their loved ones. 

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Valerie McGregor

 

I have found that as an advocate, and especially whilst dealing with older people affected by cancer, it becomes apparent that very often, the client will minimise their issue and I hear them say they they feel there is someone else more in need of this service.  The joy of this service is that we do have the time to spend in getting to know people, and giving them as much time as they need to identify the areas they would most benefit from some help. In this getting to know each other period, it really can begin to feel like chatting with old friends.

 

It’s always good to hear positive feedback about the Cancer, Older People and Advocacy project and the service it provides, but it’s also good to know that having an advocate has been so helpful, that we are now regarded as friends.  It’s clear that being there to listen or to talk things through can make such a big difference.

So many of the people who have accessed this service have said that they feel they have a friend for life which I find so humbling that I have been able to make such a positive impact.

Valerie McGregor KPAIS


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‘I don’t know where to start’

Kathleen Gillett of Dorset Macmillan Advocacy looks at the plight of older carers:

We are currently supporting a lady in her late 70s who has a long term health condition and was until only a few weeks ago cared for by her husband.  A sudden deterioration in his health owing to a progression in his cancer has turned the situation upside down and she is now his carer.  With no family in the local area she must alone cope with taking care of things at home that were formerly his domain and at the same time communicating with many professionals with unfamiliar job titles.  No wonder she felt anxious and said ‘I don’t know where to start.’

There have been many reports about the needs of carers over the years.  The importance of supporting carers is widely recognised but until now there has not been a lot of detail about older carers.  Carers Trust have published Caring About Older Carers: Providing Support for People Caring Later in Life which is a toolkit aimed at commissioners of health and social care in England to highlight the needs of carers over the age of 60.

The statistics are compelling. The number of older carers is increasing at a greater rate than for carers as a whole.  Three in five of carers aged over 85 are male and most carers over 80 spend more than 50 hours a week caring.  Carer’s health deteriorates incrementally with increased hours of caring.  Older carers are more likely to have age related illness themselves – two thirds of older carers have long term health problems. One third of older carers have cancelled treatment they needed due to their caring responsibilities.

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Carers of all ages deserve recognition and support. Older carers need the support perhaps more than anyone.  From a financial perspective research has shown that carer breakdown is often a factor in emergency hospital admissions and admission to residential care.

The toolkit chapters identify areas of need for older carers including health and wellbeing; financial concerns; social isolation; concerns for the future; information and advice; assessment, support planning and involvement and finally bereavement and life after caring. Examples of tried and tested practice are given with each of the chapters and particular mention is made of the role of advocacy services in representing and supporting carers with assessment, support planning and involvement.

We were able support the lady at an appointment with the hospital’s palliative care coordinator. Then we accompanied her to view a nursing home where her husband could be admitted to receive the palliative care he needs. She was able to make preparations and the following week her husband’s planned discharge from hospital took place.  The nursing home location is easier for visits and there are no restrictions on visiting hours and the possibility of overnight stays for family members.

Older carers struggle to remember their own needs and to look after themselves.  The support and encouragement that peer volunteer advocates can bring to older carers affected by cancer can make a huge difference to them.


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Celebrating our brilliant volunteers

Back in June we celebrated the great work of our volunteers. Today Samantha Jones from Age Connects Cardiff & the Vale tells us about their celebration event:

As part of National Volunteers’ Week on a very hot Friday in June, volunteers and staff from Age Connects Cardiff and the Vale Cancer Older People and Advocacy project met at Velindre Cancer Centre, Cardiff.

Volunteers and their partners were invited to come together to join this celebration of volunteers and volunteering. Volunteer Coordinator Samantha Jones, Advocacy Service Manager Sue Campbell and Chairman of Board of Trustees Colin Harvey were also present.

Colin gave a speech about our volunteers’ roles and their contribution to the Cancer Older People and Advocacy project before presenting volunteers Karla Flambert and Jeffrey Horton with their Appreciation Awards.

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L-R Samantha Jones Volunteer Coordinator, Karla Flambert Volunteer, Jeff Horton Volunteer, Colin Harvey Chairman of trustees

Volunteer Karla came to volunteering when Cancer Older People and Advocacy was at its beginning stage. She has supported many clients during that time and is now at full capacity seeing seven clients! “So many of the older people I speak to, express the feeling that they still have a young mind, but it is trapped in an old body. I hope I always keep that in mind when chatting etc and treat people with the respect they deserve. Retirement is great, but I am not interested in sitting round all day having coffee or lunching. I think that even as we age, we still need to be needed and appreciated. Personally I can’t think of a better way to achieve that.”

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Volunteer Jeff has been busy across Cardiff and the Vale promoting the Cancer Older People and Advocacy project to community groups and helping raise awareness of the support our cancer peer advocacy can give at health events and at hospital information centres. He also provides direct advocacy support to clients.

Following the speeches and photographs we all celebrated with some cake and fizzy (lemon and lime not champers!)

Samantha Jones, Volunteer Coordinator, Age Connects Cardiff & the Vale