..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.

 

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

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

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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. 

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.

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

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!

Advocacy – 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.

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

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 1^st 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!

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

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

‘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.

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.

Build, Learn, Share at the Macmillan national Volunteers Conference 2016

Today we hear from Bob and Maddy Smith:

Back in May three volunteers from the Dorset Macmillan Advocacy service at Help and Care were fortunate to be able to attend the Macmillan Volunteer Conference in Hinkley, Leicestershire as volunteer Peer Cancer Advocates. We were really enthusiastic about this although a little apprehensive too. We arrived at the hotel and were immediately made welcome by the friendly hotel staff and the Macmillan welcome team.

Bob and Maddy with friends

After check-in we made our way around the exhibition area which had many stands showing different aspects of the Macmillan organisation and ideas to help us as volunteers. Did you know for instance that there are Macmillan trained Boots No7 beauty advisors who know how to help people with cancer best use their products and feel good about themselves?

Throughout the Friday and Saturday there were sessions in the main conference hall as well as workshops we could attend on topics including Networking, Communication, Getting Your Story into the Media and Managing Stress to name just a few.

There were very interesting speeches from Lynda Thomas (CEO, Macmillan), Joelle Leader (Volunteering Director) and several others.

Lynda Thomas

There were so many interesting facts to learn for example in one year Macmillan:

• Supported 5.8M people affected by cancer
• 590,000 were supported by Macmillan nurses
• £260M was raised to fund Macmillan (£27.5M from coffee mornings alone)

Also we heard that

• Mobile services are provided for hard to reach areas
• Discussions are ongoing with government departments to better support those affected by cancer.

All new information to the both of us.

We managed to speak with both Lynda Thomas and Joelle Leader about Cancer Advocacy. Speaking to them opened up opportunities to raise our profile and present Cancer Advocacy to Macmillan Customer Service Centre staff and those who operate Macmillan mobile service buses in the South of England. We also spoke with many of the delegates to find out about them and tell them what we do. Many were interested including a GP (also a Macmillan volunteer) in Brighton who is now actively promoting Cancer Advocacy. So an excellent conference, lots of learning, networking and a lot of fun too. On the Friday evening there was a gala evening to celebrate what volunteers do with dancing to a live band afterwards.

A theme for the conference was:

BUILD on your existing skills and knowledge

LEARN from other Macmillan volunteers

SHARE your stories and experiences

We certainly did all these as well as recognising and celebrating the value that Macmillan volunteers give back to our communities. It was time very well spent and we would encourage others to apply to go along next year. We came away invigorated and excited with new ideas on how to better promote Cancer Advocacy and ready to help even more people affected by cancer.

Bob and Maddy Smith, Dorset Macmillan Advocacy

(N.B. Dorset Macmillan Advocacy is funded by Macmillan Cancer Support)

“I wanted to be more than “Nanny” in my retirement”

In today’s post Sherry, a peer volunteer advocate with Sandwell Advocacy’s Sandwell Cancer Older People Advocacy (SCOPA) project, tells us her volunteering story:

My name is Sherry and I have been a volunteer at Sandwell Advocacy since March 2015.  I was a staff nurse for over 45 years and when I retired in 2014 I was adamant I was going to do something productive with my time.  I have grandchildren who I adore but having had a very demanding career I wanted to be more than “Nanny” in my retirement.  I trained in Chester then worked in plastic surgery, something I thoroughly enjoyed. My final working years were spent as an ophthalmic nurse in Sandwell. Shortly before I retired I was diagnosed with breast cancer, this was a shock to me as I had always attended screening and knew exactly what to look for.  I received radiotherapy and chemotherapy and continued to work throughout. I am still under surveillance and attend yearly mammograms but “Once a nurse, always a nurse” I continue to stay busy.

I met Paddy and Juanita at a Cancer wellbeing fayre hosted by the Sandwell and West Birmingham Hospitals and they told me about the exciting new project they were working on, supporting people over the age of fifty who are affected by cancer – a perfect opportunity for me to put my skills and experience to good use.  I took part in the training and was soon partnered with a woman who had agreed to advocacy as she had some housing issues. My own experience helped me enormously as I had a good idea of what my partner was going through emotionally and I soon developed an extensive knowledge of housing policy.  Although the partnership has ended I feel I have made a very positive contribution to my partner’s journey and she knows she can come back to SCOPA if she feels she needs our help again.  With the knowledge I gained I was recently able to support one of my elderly neighbours who needed to move out of his flat whilst major work was being carried out. I wouldn’t have known about such things prior to becoming an advocate. I have also been instrumental in getting a gas supply to the flats where I live in order that I (and other tenants) can manage our heating more suitably. Overnight storage heaters are not the best if you need to adjust the temperature frequently as a result of medication. They do say you learn something new every day.

Sherry

Throughout my career I had experience of advocates and their role but it has been challenging and very rewarding to be on the other side of the relationship.  My knowledge of the NHS and hospital policies has helped me no end and I have enjoyed visiting hospitals with my partner who was not confident in this environment.  I was able to ask a lot of questions on her behalf to ensure she was fully able to make informed choices.

I now have a new partnership with a husband and wife, they also have housing issues although totally different.  I have enjoyed running around for them and making phone calls to assist them in downsizing to a more manageable property. They appreciate my matter of fact approach and particularly the fact that I have time, something they haven’t always got.

I haven’t limited my volunteering to advocacy practice, I have joined the Local Cancer Champion Board as I feel I have professional experience which will benefit the project. I have also ventured down to Vauxhall in London with Juanita, the volunteer coordinator, to attend a National Champions Board meeting at Macmillan HQ – that was a long and tiring day but I thoroughly enjoyed the opportunity to meet with other champions and staff on the programme.  I have taken part in the national evaluation of the Cancer, Older People and Advocacy Programme  by BRAP and was also involved in Working Together for Change led by Helen Sanderson Associates which again drew on other aspects of my experience.

I would recommend volunteering to anyone like me who wants to give something back.  Additionally for any retired professionals who want to do something similar to what they have done as a career, this is an ideal opportunity to be part of a valued and respected team.  If anyone out there is thinking about becoming a peer advocate I would recommend you talk to someone who is volunteering and find out first-hand what it’s like, I think you will get a positive response.

Sherry, Sandwell Cancer Older People & Advocacy

How I (Try to) Avoid Advocacy Burnout

One of the many benefits of working with health professionals, in this case Dr Charles Campion-Smith who sits on our National Health Professionals Board, is that they often so freely share valuable information. Charles has introduced me to a smart phone (iphone and Android) app that may well be useful to advocates and patients.

The Cancer.net app is from the US but parts are very relevant to UK.

In particular the ‘Questions’ tab takes you to a page where someone can write questions (or select a number of provided ones) they want to ask – typically in a consultation.

The app then allows the anwsers to be recorded on the phone.

Audio taping consultations has been used successfully for some time but this is much less cumbersome and preparing questions together might be useful to advocate and patient.

I explored this app and came across a very interesting article written by Anita Mitchell which I know will be of great interest to our own advocates. I have now secured the relevant permissions to reprint this article in full and would like to thank Anita and the American Society of Clinical Oncology for allowing us to share this article.

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Anita Mitchell was diagnosed with stage IV colon cancer in 2005. She is the cofounder of the Colon Cancer Stars of Washington State.

My advocacy story
I had not planned to become a colon cancer advocate. It is something that I just became. I suppose after everything that happened to me, I had to find meaning and purpose in my diagnosis.
I fell into advocacy in 2005, when I was diagnosed with stage IV colon cancer after just turning 41. The fact that my primary care doctor disregarded my symptoms and missed my diagnosis fueled my passion to become an advocate for prevention and a voice for those diagnosed at a young age. I was the third parent at my children’s school to be diagnosed before turning 50, which is the recommended screening age for colon cancer. So, I began educating families about screening and the symptoms of colon cancer. One of the first ways I did this was by starting an awareness day at my children’s school—I called it Dress in Blue Day. Years later, it became a national event!
I wanted to spread the word. After I learned how preventable my case was, I didn’t want this to happen to anyone else! But there were other things going on in my life as well. I was fighting for my life, trying to raise my 3 kids, and dealing with a crumbling marriage. It was a lot to balance.
Still, I started getting involved with some local cancer survivor programs. Then I began volunteering for LIVESTRONG, American Cancer Society, Colon Cancer Alliance, Fight Colorectal Cancer, and Gilda’s Club. Soon after, I found myself on committees for my hospital and state. I even posed for the Colondar for the Colon Club!Eventually, I started my own nonprofit, Colon Cancer Stars of Washington State, with the help of my Washington State Colon Cancer Task Force.
Advocacy is needed to give patients and survivors a voice when cancer becomes faceless. I clearly remember sitting at the ASCO Annual Meeting one year as a patient advocate. I was still on chemo, listening to the doctors talk about how a drug gives you maybe 1 extra month of life, wondering if the cost was worth it. I wanted to jump up and scream, “Of course it is!”
In the end, I got very lucky and was out of treatment after only 2 years. Even though I survived, I still lived from scan to scan and needed to find meaning in my life apart from my familly.
Handling advocacy burnout

When you are an advocate, you are smacked in the face with limited time and tons of things you want to do and achieve. You have to quickly learn to prioritize what is important. If you don’t, you can get burned out on advocacy.Here are some of the strategies I use to try to keep burnout away.

• Learning to say no. I quickly learned I would have to become comfortable saying no to different requests. This was not always an easy thing for me to do. I realized that I had to believe what I did was worth my energy and my time.
• Keeping balance. This is very hard for me, so I like to think of my life as a pie, and cancer is a slice of it. Sometimes I have a few slices, but if it becomes too many, I know I need to take a break. Cancer affects the whole family, so I had to be mindful that sometimes my children did not want to hear about colon cancer advocacy. For them, it was enough that they had almost lost their mother to it!
• Find support. I have learned to reach out for support from close friends who are cancer advocates. They understand the sadness and frustration of losing people to the disease because of the slow pace of science, politics, or lack of funding.
• Step away when you need it. Like they say during the airplane safety messages, “Put the oxygen mask on yourself first before helping others.” I have found this to be the case in cancer advocacy, especially when it comes to online help. These groups can be overwhelming at times, and sometimes you need to turn off the computer for a while. So when I need to, I step away for a bit and I do not let myself feel guilty about it.
• Seek what is meaningful and joyful in your advocacy. I try to slow down and analyze what brings me joy and a sense of meaning. I look for signs that I am going in the right direction. Sometimes it is a simple note saying, “Thank you, I got screened after I read your story in the paper” or “I slept all through the night for the first time since my diagnosis after I talked to you.” I once had someone say she kept my story in her pocket. You never really know how many people your story will touch or even save, but it is many more than you will ever know. So I choose to carry on!

Anita Mitchell Voices on Cancer

“this empowered her to then make the next step on her own…”

In today’s post John, one of our dedicated peer advocates tell us his story:

I came to volunteering following my retirement. I wanted to use some of the skills I had acquired during my working life in hospitals and my own personal experience of cancer to support others.

As a volunteer advocate for Age Connects Cancer and Older People Advocacy project, I provide non-judgemental support ensuring that the older people’s views and wishes are represented. As a volunteer advocate I ensure there is a better understanding of the clients’ needs, and follow instruction solely from my client; confidentiality and trust is key to this role.

One call was to support a lady with her decision about moving. I went to visit her at home and found she lived in a top floor flat with no lift. She had difficulty walking so was finding herself increasingly staying at home and going out less as she couldn’t face the thought of struggling with all the stairs.

She asked if we could gain some information from her Housing Association, so with her consent they were contacted and the information was obtained on her behalf.  This information was discussed when I met with her face to face and we chatted at length about her possible options. She liked living in a flat as it was small and manageable. She also liked living on a higher level as she felt safe. However, she understood that with no lift and an impending operation which would incapacitate her even further, life in her top floor flat was going to become even more isolated and difficult. We talked further about the possibility of improvements she may find in her daily life if she moved to a property that had access to a lift and following this she felt more confident to phone the housing association to discuss her options and take it further. Having someone to talk to was vital for this lady, she had limited family and initially she didn’t know how to start the process of enquiry about moving, or even whether it was a viable option. Having spent time with her talking this through, I feel this empowered her to then make the next step on her own.

Another call was to visit a lady in Llandough Hospital. She had battled hard against her cancer and was now receiving end of life care in hospital. There was an absence of relatives so she was pleased to see a visitor. I had previously assisted her with some paperwork when she was at home, so it was nice to see her again, albeit in sad circumstances. I sat with her, held her hand and waited to see if she wanted to talk. When someone’s very unwell they may not want to listen to a chatterbox! Just being there and holding hands can help a person feel better.

She said she had declined physiotherapy because she was frightened in case she should fall. I spoke with the ward nurse and voiced the clients concerns – we arranged that the physiotherapy would start again.   I enquired about my clients care as there had been some queries about a move to another hospital, at that point in time she was too poorly for a move to take place and going home was not an option as there was no one to take care of her.  The process of what was currently happening was explained to my client and she understood why these decisions had been made. I made arrangements to visit again the following week, but very sadly my client passed away.

Through my volunteering work I support older people who have been touched by cancer with a range of issues, and hope to continue to do so. I can’t help with everything but I do my best. I make the extra effort to give my time and listen – I always listen.

John, peer advocate, Age Connects Cardiff & the Vale

Living in Cardiff and the Vale? If you or someone you know over the age of 50 is affected by cancer and could benefit from our service, please get in touch to discuss how a volunteer advocate could help you.

Call 029 2068 3681 or email copa@ageconnectscardiff.org.uk

 

 

Linking with local befriending services in Bournemouth

The team from Dorset Macmillan Advocacy at Help and Care, Jo Lee, Senior Advocate and Kathleen Gillett, Volunteer Coordinator, recently shared challenges and solutions with colleagues from local volunteer befriending services at The Grove Hotel in Bournemouth (a retreat for cancer patients and those with serious illness) at the invitation of Anita Rigler from Macmillan Caring Locally.

Volunteer advocacy and volunteer befriending schemes are both models of peer support although they differ in several important aspects and the scope of advocacy support is, I would argue, considerably wider.  The mechanics of providing a good experience for volunteers through good practice in recruiting and training, matching and retaining are however very similar.  For both roles volunteers require highly developed listening skills and an awareness of the importance of the boundaries of the role. A good discussion was held on supporting volunteers when advocacy partnerships or befriending matches are ended.

L to R Carol Stevens of Faithworks Wessex – Compass Project, Anita Rigler of Macmillan Caring Locally, Jo Lee, Macmillan Senior Advocate at Help and Care, Jan Childs of Christchurch Angels, Claire Bridges of Dorset Mind

Having a good understanding of the differences in our services will enable us to signpost and refer on to the most appropriate source of support. We are opening our next volunteer induction training day to the befriending coordinators to give them an indepth understanding of the scope of peer advocacy. The new networking group plans to meet twice a year.

Kathleen Gillett, Dorset Macmillan Advocacy