Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Looking back over the last year at ICANN

Janet Cullingford, Services Manager at delivery partner ICANN tells us about their recent AGM and input on the day related to their cancer advocacy work:

On Tuesday 6th October Independent Community Advocacy Network North (ICANN) held our Annual General Meeting, as well as the usual AGM business, this gave us a wonderful opportunity to celebrate our involvement with OPAAL on the Cancer Older People and Advocacy Project, by showcasing the Cancer Voices presentation, including film.Untitled

Angela Broadbridge the project lead from OPAAL, introduced this with a presentation explaining both the Cancer Voices and ‘Train the Trainer’ work which we participated in. 

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Our audience were then invited to watch a short film designed to encourage health professionals to refer older people affected by cancer to our service. These films are also available on this blog, and on You tube. This was very well received, with people commenting on how it brought the project to life.

 

 

This was followed by two ICANN ‘train the trainer’ representatives, talking about their own cancer journeys; Richard Timson, one of our volunteer peer advocates involved with our Cancer Older People and Advocacy work, and Marilyn Eckton who is a member of our Local Cancer Champions Board. They were both wonderful advocates for the benefits of the Cancer Older People and Advocacy project. Their stories were both emotive and powerful and told from their own experiences. Whilst those experiences were quite different both had also shared many of the same issues, issues which could have been improved with the support of a peer advocate.    

ICANN AGM

Since this event they have been invited by two of our local clinical commissioning groups, to present to their boards. They will talk about the project, as part of the patient experience group, to inform future service delivery.

Janet Cullingford, ICANN

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Celebrating Age in Bristol

A crisp bright morning on Sunday 26th October saw the launch of Bristol’s ‘Celebrating Age Festival’ at the M-Shed (a three storey, contemporary museum of Bristol social and industrial history) that overlooks the docks in the centre of town. Organised by Age UK Bristol and a consortium of older people’s organisations this launch event took over the whole atrium and exhibition space of the M-Shed with stalls, presentations, and all manner of shows.

Celebrating Age Festival 2015

The Age UK Bristol Cancer, Older People and Advocacy project had a table in the Health Room, sharing a space with our local partners Macmillan Cancer Support, who were there to promote their Buddy scheme, and various other local projects and services. Luckily for us the Macmillan staff member on the stall is actually on the Bristol Cancer, Older People and Advocacy project’s Local Cancer Champions Board (LCCB), so was well able to explain the difference between their various services and that offered to older people affected by cancer by our advocacy project. Very kindly, two other members of the LCCB (Joan Cox & Sue Perry) had offered to man the stall for the day, so were able to give all of the information people needed. The Health Room also had stalls covering a wide range of condition-specific services, such as the Alzheimer’s Society & the Stroke Association, and other organisations interested in older people’s health and well-being, such as HealthWatch and Care Direct.

COPA Project LCCB member Sue Perry explains the project to members of the public

COPA Project LCCB member Sue Perry explains the project to members of the public

After setting up the stall, and a handy half-hour of networking around the room sharing details of the Cancer, Older People and Advocacy project and collecting contact details for organisations that would be interested in knowing more, it was time for a quick interview on local radio, which was broadcasting live from the event throughout the morning. A whistle-stop tour through what the service could offer, why the service is needed, and how potential service-users and volunteers could get in touch was livened up by the background noise of a fantastic gentlemen who can ‘sing’ the songs of hundreds of different birds echoing up and down the atrium.

Around 3,000 older people visited the Celebrating Age festival and enjoyed several choirs, a fabulous fashion show for people over 65, indoor cricket, cookery demonstrations as well as being able to collect information on the Cancer, Older People and Advocacy service, Age UK Bristol, and the many other agencies that want to help older people in the city. Although it was hard work it felt well worth it; roll on Celebrating Age 2016!

Ben Sansum, Age UK Bristol


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A view from a Local Cancer Champions Board member

My name is Joan Cox and I am a member of the Age UK Bristol Local Cancer Champions Board (LCCB).  As an Age UK Bristol trustee I was very pleased when we received the funding from OPAAL to run a Cancer Older People and Advocacy Project, and was keen to support the development of this work.  I hoped I could bring both professional and personal experience to the Board.

I have retired, but spent my working life in health and social care.  Initially I worked in social work and vocational further education, then in the voluntary sector managing community projects, some part of national programmes, providing services for carers, people with dementia, and adults with other health needs including cancer.  Many of these projects recruited and trained volunteers to work with service users.  On a personal note I had cancer myself 25 years ago and am very aware of the impact of receiving a diagnosis of cancer.  I was in my 30s, very fortunate to have the support of friends, family, and work colleagues during my treatment, and made a full recovery. Other people’s experiences, particularly those of isolated older people can be very different from mine, and this is why the Project is so needed.

Joan photo

Joan Cox

 

There have been two meetings of the Age UK Bristol LCCB to date – in September and December 2014.  My fellow champions are:  Piers Cardiff (Macmillan Regional Volunteer Development Manager), Sue Perry (Age UK Bristol Trustee and former Director of Abbeyfield), Carole Dillon (John Dillon Foundation, a new charity for cancer care in the Bristol area), and Tracey Street (Macmillan Involvement Coordinator for the South West).  Ben Sansum (Age UK Bristol Information and Advice Service Manager and the Project Manager) has supported the Board and acted as interim chair, taking minutes and distributing papers.

So far we are a small, but focussed and enthusiastic, group keen to learn about the progress of the other OPAAL projects around the country as well as thinking about how our local project is developing.  We have shared ideas about many aspects of the project including publicity, referrals, volunteer recruitment and support, how we can use our local contacts and networks to share information about the work, and encourage others to join our Board.

With volunteers’ support for older people at its heart, the Cancer Older People and Advocacy Project reflects the wider ethos of Age UK Bristol.  All our services for older people rely on volunteers to keep them running, and we are very keen to support volunteering amongst older people themselves as it offers opportunities to enhance their personal well being.

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Across Bristol the project complements other support and services for people with cancer, and is being welcomed by local agencies as well as the individual older people who are being referred.  We appreciate that it is still early days and it will take time for the project to grow and develop, but we are confident we have made a good start and look forward to the future.  The LCCB has an important role to play guiding and overseeing the project and using our local knowledge, contacts and networks to help it grow.

 

Joan Cox, LCCB member, AgeUK Bristol

 


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Launch of SCOPA on Macmillan Cancer Support World’s Biggest Coffee Morning

How time flies, it’s hard to believe it’s been over two months since Sandwell Advocacy hosted the official launch of “Sandwell Cancer, Older People and Advocacy Project” at Sandwell Irish Community Association in The Lodge of Langley Park, a lovely setting in Sandwell on such a beautiful morning.Sandwell Advocacy Logo

This date on 26th September may be familiar to you as it is also Macmillan Cancer Supports ‘World’s Biggest Coffee Morning’. Our newly recruited Volunteer Co-ordinator, Juanita Williams has been hosting Coffee mornings since 2006 and suggested this would be a great day to invite partners, colleagues and friends to celebrate this project.  The local authority Press Officer came along to photograph and report on the event.

Macmillan Cancer Support fundraiser, Cath Mansell with Mayor Cllr Derek Rowley and his consort Mrs. Glenis Rowley

Macmillan Cancer Support fundraiser, Cath Mansell with Mayor Cllr Derek Rowley and his consort Mrs. Glenis Rowley

The Mayor of Sandwell, Cllr Derek Rowley and his Consort Mrs Glenis Rowley arrived promptly at 10.00 am and were met by our Chair Lesley Donnelly and Project Manager Dave Bradshaw. They were keen to hear about the project and how it can help Sandwell residents who have been affected by cancer, something he tells us is all too common across the borough.  They were informed about the invaluable role that volunteer peer advocates play in this work and additionally who can be referred.  As the morning progressed he was able to sit and talk our Local Cancer Champion Board members who joined us.  There were many local residents who came out to support the event and they were also interested to hear about the work and many knew of family and friends who would have benefited from the service.

Sandwell Irish Community Association venue, the Mayor and consort mingle

Sandwell Irish Community Association venue, the Mayor and consort mingle

As the morning progressed there was much chatter, drinking of tea and eating of delicious cakes along with a raffle which had been organised and donated by Gayle Pritchard of the local Co-op funeral directors. Gayle is keen to be more involved with the project and is intending to invite our team to attend their regional meeting in order to meet other partners.

Sandwell NHS and local authority Public Health professionals mingled with staff and guests until 1.00pm when we said goodbye to the Mayor and his party.

All in all we felt the launch was a success in raising the profile of the work we do and hope to have inspired some people to join our increasing team of volunteers.

Lesley Donnelly, SCOPA Chair; Mayor Cllr Derek Rowley; Juanita Williams, volunteer coordinator; Dave Bradshaw, Project Manager; Paddy Elmore, SCOPA Independent Advocate

Lesley Donnelly, SCOPA Chair; Mayor Cllr Derek Rowley; Juanita Williams, volunteer coordinator; Dave Bradshaw, Project Manager; Paddy Elmore, SCOPA Independent Advocate

A total of £300 was raised thanks to the generosity of all who attended and the volunteers who stepped up to serve endless refreshments. Hopefully this will become an annual event as our numbers grow.

 

Juanita Williams, Volunteer Co-ordinator


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Why I’m a Local Cancer Champion in Knowsley

My name is Mary Spreadbury and I am 72 years of age. I have had cancer 3 times and I am still living a busy life and most of all I am enjoying myself.  I sit on the Local Cancer Champions Board in Knowsley, where KPAIS are delivering the Cancer Older People and Advocacy project.

KPAIS

I would like to share my experience with you. I have had 2 mastectomies and reconstruction.  The first mastectomy was in December 1995 when I was studying for my degree.  I had 6 weeks of radiotherapy (of course weekends off for good behaviour!) I went back to college and continued with my studies.  The second was a year later almost to the day in December 1996.  Then chemo and all that goes with it.

 I have had a few frights along the way.  At one time they thought the cancer had gone to my lungs, but luckily enough it was found to be the damage caused by the treatment that I have had to keep me alive.  Another time there was a lump in my neck, that was fatty tissue and so it goes on.  I always smile when they tell you that you are in remission, whatever that means.

 

Mary Spreadbury

Mary Spreadbury

I only had advocacy help in the last couple of years.  As I’m getting older I feel I need specialist help because my needs change with ageing.  This is why I’m volunteering with Knowsley Cancer Older People and Advocacy as it’s so important that advocacy for older people affected by cancer is a must.

Mary Spreadbury, Local Cancer Champion, Knowsley


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Three months in…

Here at AgeUK Bristol we are now three months in to the Cancer Older People and Advocacy project and are developing some momentum. Much of our time since the project began has been spent contacting the many relevant agencies and groups in Bristol that we hope our work will compliment, from nurses groups to specialist benefit advisers for people affected by cancer. This has been a slow process – one thing that everyone has in common is that they are incredibly busy! – but one that will pay dividends in the long run. Having the support of our local Macmillan Cancer Support Involvement Coordinator has been invaluable for this process, with her local knowledge proving invaluable when it comes to knowing the right person to contact within a given organisation. Hers is also a useful name to drop when trying to arrange a meeting or to speak to someone on the phone – it seems that everyone has great respect for the work Macmillan does across the city and we hope a little of that respect can rub off on us by association. We are pleased that with her help we have been able to set a date for our first Local Cancer Champion Board meeting.

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Alongside the work of spreading the word about the project, both to encourage referrals from relevant agencies and to try and recruit members for our Local Cancer Champions Board, we have started to provide advocacy to older people affected by cancer. These have largely come to us through our existing information lines and referral routes from other agencies, but we are now starting to see referrals that are specifically seeking this service. Obviously this is a very encouraging sign so early in the project and we are very lucky to have an experienced and professional paid advocate to take on these cases immediately. We hope that by being responsive to these early referrals and providing a top-quality service to these initial clients we will give our partner organisations confidence to keep identifying us as a much-needed source of support and advocacy for their clients. Even in these early days it is clear the service is much needed with client seeking help with a wide range of issues, from basic information and support through to accompanying people to treatment consultations to help deal with the bewildering array of information being given to them by their consultants.

Age UK Bristol Logo RGB

A three-year project such as this is a marathon rather than a sprint, but the advocacy that has already been done for our clients gives us great hope for the long-term value this work is going to bring to people who really need it.

Ben Sansum, Advocacy Manager, AgeUK Bristol


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Our First Local Cancer Champions Board Meeting

We recently held our first Local Cancer Champion Board (LCCB) meeting which was a huge success. We went through our draft terms of reference, making some additions and identified the need for a representative from an older person affected by cancer, an older person’s consultant and a professional working in the Vale; the Board have identified possible ways of recruiting these individuals.

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The representatives on the LCCB  were also able to offer us further guidance and support for the Cancer, Older People’s Advocacy team and our Peer Cancer Support Advocates.

Macmillan Cancer Support currently provide drop in sessions at their hub in the University Hospital of Wales for anyone interested in popping by. Tenovus have invited our volunteers and staff to attend their ‘speed dating sessions’, where they can learn a lot about cancer in a different and fun way and in a short space of time. Velindre Hospital has offered to show our staff around their facilities so that staff can see the treatment rooms and equipment and machines that are used.

We aim to utilise the above to bridge the time between recruitment of the Peer Cancer Support Advocates and matching to a client

 

Angela Jones, Advocate

Angela Jones, Advocate

The LCCB was also a good sounding block for ideas of the best way to launch our project and we have chosen to hold small road shows at our 3 main hospitals. We plan to do this the second week in October.

Our temporary chair from the LCCB was also able to attend the National Cancer Champions Board meeting in London recently at Macmillan Cancer Support HQ.

Angela Jones, Advocate, Cancer, Older People’s Advocacy Project, Age Connects Cardiff & the Vale