Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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 Bristol perspective…

Ben Sansum from delivery partners AgeUK Bristol gives us his take on what delivering a Cancer, Older People and Advocacy service has been like so far…

The Cancer, Older People and Advocacy project is a serious piece of work, which often involves working with people in very difficult situations. Despite this one of the joys of the project so far has been how keen different organisations are to partner with us at Age UK Bristol to make sure that the project reaches those older people who are most in need of help and support.Age UK Bristol Logo RGB

From the beginning we have been very lucky to have significant help from our local Macmillan Cancer Support services. At a regional level, the Regional Involvement Coordinator, Tracey Street, has been invaluable in introducing us to other parts of Macmillan. Closer to the front-line we have developed a very good working relationship with several Macmillan services that work directly with the public. The coordinator for our local Macmillan ‘Buddies’ scheme, Piers Cardiff, sits on our Local Cancer Champions Board, and has been great at identifying training opportunities for us, as well as referring ‘Buddies’ clients who need more in-depth advocacy to us for us to help. Through Piers we have been introduced to the staff and volunteers at the Macmillan Wellbeing Centre at Southmead Hospital, which directly led to us recruiting our first volunteer who has actually committed to doing the training and becoming an advocate.

BHOC Voice magazine

 

Between them Tracey and Piers have helped spread the word about our project to the huge range of Macmillan services across the city, including the CAB/Macmillan Welfare Advice service, and the Cancer Information & Support Centre at the Bristol Haematology & Oncology Centre (BHOC). These links have led to us having a large article in the BHOC ‘Voice’ magazine, which will be circulated among patients and staff for the next six months, giving us a very high profile among those people most likely to need the support of our Cancer, Older People and Advocacy project.

 

 

Beyond Macmillan we are building very useful partnerships with all kinds of organisations, from the social services department in the local authority to the human resources department at Bristol University. Most pleasingly we are starting to build a good rapport with a range of NHS services, including district nurses and home visitors, and the Long-Term Conditions Team at one of our largest inner-city health centres. It is always encouraging to meet with hard-pressed, time-poor professionals working on the most difficult cases, who still find time to meet with us because they think it will be beneficial for many of their patients.

Ben Sansum

Ben Sansum

 

 

Partnership working has a cumulative effect – the more you do it, to more word spreads, the more other people and organisations want to talk to you. It has proved key in the work of the Cancer, Older People and Advocacy project in Bristol so far, and we hope it continues to develop.

Ben Sansum, AgeUK Bristol


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The local challenges and rewards of our Cancer, Older People and Advocacy work

The Cancer, Older People and Advocacy programme has at its heart the relationship between two human beings: between an advocate and their partner. In Bristol we are finding it an ongoing challenge to recruit volunteer peer advocates, with many people approaching us to enquire but very few continuing on to do the training required and offering the long-term commitment older people affected by cancer need when they are partnered with a peer-advocate. In order to try and address this we have produced a new leaflet that concentrates just on the volunteering aspect of the project – you can see a picture of this below – with a separate leaflet advertising the service to potential clients. We have already seen an increase in potential volunteers contacting us in the two months that we have been distributing this new piece of publicity.

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Despite the ongoing challenges of finding suitable volunteer peer advocates we have continued to offer an incredibly supportive service to those older people affected by cancer who have approached us for help, through the efforts of our paid advocacy worker, and that is what I want to concentrate on for the rest of this blog. Our referrals have come from a wide range of sources, including the local authority, health centres & GPs, and other voluntary agencies. Some of the most complex cases we have picked up have come from agencies that have done a certain amount of work with an individual, but have felt that longer-term, more in-depth support is needed. Our paid advocate has been working with one such individual for the last three months.

Christina (not her real name) had been being supported by another voluntary organisation, but when they reached the limits of their service they were anxious that Christina would not be abandoned to fend for herself. Christina’s diagnosis of lung cancer has been complicated by her status in the UK – despite living here for decades she is in immigration ‘limbo’, with her case being held by the Home Office for many years, despite the best efforts of a solicitor to resolve the issue. This meant that as well as the emotional and medical issues she was facing following her diagnosis she also faced extreme financial and practical pressures that are not normally encountered by most older people affected by cancer. While our advocate clearly couldn’t intervene in the legal aspects of her situation she was able to work with Christina on many of the practical issues she faced, helping her to secure ongoing access to food and nutrition, and with assistance from another charity, helping Christina to secure new clothing, as most of what she had was no longer good enough to wear. By accompanying Christina to meetings with these other sources of support the paid advocate was able to help Christina make some small but practical changes to her day-to-day life that have left her much better able to deal with the medical side of her current situation.

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The trust and mutual respect that has grown during this work has set this advocacy partnership off to a very strong start, with Christina knowing that the advocate will be there whenever she needs her, giving her greater strength to face her ongoing challenges knowing she isn’t facing them alone. As always, it is the quality of this relationship between advocate and partner that is key, and that continues to give the Cancer Older People and Advocacy programme its undoubted strength.

Ben Sansum, AgeUK Bristol, April 2015


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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.

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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

 


What is the relevance of my story to my advocacy partnership?

This question formed the basis of small group discussions at the recent Networking Forum for peer volunteers of Dorset Macmillan Advocacy at Help and Care.  Our volunteers come together every other month to share experiences and learn from one another.  In November there was a real buzz as our newly inducted team met our volunteers who have already had several partnerships.  The groups formed for this particular discussion included a mix of experienced and rookie advocates so the question could be considered from a theoretical angle and looked at in practice.

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There was enormous energy in the room and fierce engagement with this topic.  Jo Lee, Macmillan Senior Advocate, invited feedback from the discussion and we captured many interesting points including those shown below.  One volunteer commented afterwards that she felt that participants had been ‘courageous’.

‘A partner may have other issues such as social issues or co-morbidities which are of greater concern to them.’

‘By getting to know your partner you allow their priorites to become clear.’

‘Guard against saying “I know how you feel” – we all feel differently’

‘The practicalities of how we personally cope could be more relevant that how we ourselves feel or felt.’

‘It could help a partner to know that their peer volunteer advocate has come through difficult times.’

‘Create a safe space for your partner to think and speak in.’

We were very glad to be joined on the day by Rosie Young from Oxfordshire Advocacy (see Rosie’s recent post). Rosie stated how valuable she felt advocacy support had been for her and described her experience to us.  Help and Care and Oxfordshire Advocacy are linked as part of the mentoring scheme for new delivery partners and Dorset Advocacy are similarly linked with AgeUK Bristol.

Rosie Young from Oxfordshire Advocacy and DMA volunteer Marion  Summers

Rosie Young, Cancer Champion, Oxfordshire Advocacy, and Marion Summers, Peer Volunteer Advocate, Dorset Macmillan Advocacy

 

 Kathleen Gillett, Dorset Macmillan Advocacy


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This kind of service is sorely needed…

My name is Juliet Hammonds and I have worked in Information and Advice at Age UK Bristol for the past three years. I began work here as an advocate for people with care home related issues and have studied for and achieved a City and Guilds in Independent Advocacy while providing that service.

When the funding for that post came to an end I started working for Age UK in a split role as a Dementia Welfare Benefits Adviser and a Cancer Advocate. There is a lot of overlap between these roles, with many clients having both dementia and cancer, or I might see a couple where one is affected by one and the other one is affected by the other. I can often offer clients in these circumstances greater continuity of a service without needing to refer them or signpost them elsewhere.

Juliet Hammonds

Juliet Hammonds

Since starting this post in May I have been working with approximately twenty clients on a variety of issues. These issues have included attending best interest meetings and writing best interest letters, providing information about benefit entitlements, helping to sort paperwork following a death, helping people apply for supported housing when conventional housing is becoming too difficult to manage, getting help and support for carers, as well as lots of listening, general support, and signposting.

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The post has had its challenges; accompanying a client with learning difficulties to a consultation meeting regarding their cancer diagnosis was a new test for me, but helping the client to understand complex information and helping them to express themselves in relation to their health situation was clearly of huge benefit to the client. It is also challenging to work with people who have had a terminal diagnosis, although it is good to see the benefits good information and a listening ear can offer people in that situation. This kind of service is sorely needed for older people in Bristol and I’m looking forward to helping to build the project over the next few years.

 

Juliet Hammonds, Age UK Bristol, Cancer Older People & Advocacy project


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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.

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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