Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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A day in the life of……..a peer volunteer advocate

Our thanks to Jill Wallace, who is a peer volunteer advocate with programme partner Advocacy in Barnet, for the following enlightening blog post:

So irritating, I have woken up so early as usual; the habit of waking as if I am going to work never seems to stop.  Priority is to feed my cat Izzie and have my first of many cups of tea and read my book before the newspaper is delivered.

Jill

Jill

There is an advocacy support meeting today which I am looking forward to as there will be quite a few new volunteers attending. I think it is such a great opportunity for the new volunteers to meet other advocates and have the opportunity to listen to the variety of work we carry out. We have a speaker at each monthly meeting and try to book other organisations working in Barnet; the information can be so useful to people that turn to Advocacy in Barnet (AiB) for support.

Very interesting support meeting ; it was very rewarding chatting to the new volunteers during our coffee break to hear that they felt relieved and happy at the level of support available to them at all times.  Today’s speaker will be of great interest to some of our clients; a family business that can offer bespoke meals delivered as and when required at a very reasonable price.

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I have arranged an initial visit accompanied by Georgia, a trainee Social Worker working with AiB as part of her training. As the meeting was from 10 – 12 am we have plenty of time for a nice lunch and chat together before our visit at 2pm at Finchley Memorial Hospital. So far I am really enjoying my day! Spent lunch with Georgia discussing how much she had enjoyed and learned from working with AiB. Hearing how this had helped her as she was coming to the end of her training was very enlightening.

We visited our client Mrs A, age 90, at Finchley Memorial Hospital.  After explaining the support AiB could offer, and obtaining signed authority to act on her behalf, Mrs A spoke of the concerns she had regarding where she would live once discharged from hospital as she was aware that she was physically unable to live independently. Happily we were able to point out that Mrs A did have choices and advocacy would be happy to liaise with all the professionals involved to ensure that her opinions and decisions are listened to.  We discussed with Mrs. A the action we would be taking on her behalf to ensure they met with her approval.

Georgia had taken notes during the meeting which ended at 3.15pm; we spent 15 minutes discussing Mrs  A’s case.

Arrived home just after 4pm having had a very varied day, bit tired but pleased.

Jill Wallace, peer volunteer advocate, Advocacy in Barnet


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Mike was terrified of meeting with his doctors, Bob helped build his confidence and gave a voice to his fears

Today’s blog post comes from Ang Broadbridge, OPAAL’s Deputy CEO talking about our latest Older People’s Cancer Voices film.

The COPA programme is complemented by our Department of Health funded Older People’s Cancer Voices project; it’s about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision.  I’ve been leading this project for 18 months and we’ve tried to give older people access to a wide range of tools to support them to share their experiences.  I’m really excited about the films we are working on with older people.  Bringing their stories to life and seeing advocacy partnerships on screen draws a focus to the many benefits of advocacy, highlights the impact of cancer for older people and shows the strength of those partnerships.

We work with vulnerable client groups and this has been our first foray into filming one to one with advocates and their advocacy partners.  We wanted to be brave about telling these stories and not shy away from difficult topics, working alongside older people to bring these issues to light sensitively.

Mike’s Story, recently released on our YouTube channel highlights some of the many issues advocates support older people affected by cancer with.  Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate.

Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer.  He describes feeling terrified and disillusioned, sometimes suicidal.  Bob was someone he could talk to, someone who really knew cancer, Mike says he feels it is essential “to talk to someone who has had similar experiences”.  Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis.

Bob helped Mike with a wide range of issues; helping to organise his paperwork including identifying pensions, speaking to HMRC and helping him to complete his tax form, encouraging him in his progress overcoming alcoholism, encouraging him to take steps to pick up the telephone and return to the local project who were supporting him with his recovery after he lapsed following his cancer diagnosis, reassuring him about side effects of treatment, ensuring health professionals were made aware that he could feel claustrophobic in smaller spaces, and at first representing his wishes and needs, later encouraging him to have the confidence to do these things for himself next time.

Bob reflects on how the objective of the partnership, to help Mike to stand on his own two feet and express his wishes, has been achieved and he feels he has learned a lot from Mike too, and the many other advocacy partners he has supported in his role.

You can find out more about Older People’s Cancer Voices by following the hashtag #mycanceradvocacystory on twitter, and by following OPAAL’s YouTube channel.


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A very Happy New Year

Happy New Year to all of our readers and contributors.

We have great news to start off the New Year. As you may know we were shortlisted in November in the UK Blog Awards for this blog. Our entry is in the best Health and Social Care Blog category. OPAAL had to put out a big call to our members, stakeholders and friends encouraging them to help us through the initial public voting phase. We were up against some much larger organisations with a bigger social reach than us.

We must have secured a very strong number of votes because on Monday we received the news that we have been announced as a finalist, which means we eagerly await the judge’s vote later this Spring and in the meantime we have a new ‘finalist’ badge to display on our blog! We would also like to thank all of you who voted for us.

facebook-1-2It’s brilliant to have this recognition for our blog. We work tirelessly to secure new content to keep it fresh and our delivery partner projects work hard to make sure we have something new, interesting and timely to share.

This news will encourage us to keep writing; it’s great to be starting the new year on such a positive note!

We’re so happy to be showing the world the impact of independent peer advocacy and that #advocacyworks.

Marie McWilliams, OPAAL


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The other “C” word

Juanita Williams of Sandwell Cancer Older People and Advocacy (SCOPA) project is thinking “Christmas”:

I have to admit I am a massive fan of the Christmas period. For me it’s all about friends and family and getting together having fun. Having said that I am not averse to giving and receiving presents particularly if they are given with love.

Imagine how delighted I was to hear from one our Local Cancer Champions Board members, Paul Litchfield, last week to tell me about some Christmas hampers that were being distributed by Macmillan Cancer Support from one of their partners Poundland.

The Partnership with Macmillan Cancer Support and Poundland started in May 2009 originally for one year only. Following the success of Year one where the £100k target was smashed to raise £180k and following a staff vote, the partnership continued into Year two. Each year (sometime between January and March) Macmillan go through the staff vote process and have won this each time. It was then recommended that Poundland remain supporting Macmillan until they had achieved £1 million. This was reached in March 2014 and it was then decided that the partnership would continue.

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They are now into the eighth year (9th by May 2017) and are on a drive to crack £3 million by the end of 2016. Macmillan Cancer Support recently received a huge donation from the sales of carrier bags (£672k). Poundland Staff have also taken part in numerous fundraising events including London Marathon, National 3 Peaks, Land’s End to John O’Groats, Dragon Boat races and a couple are hoping to do Mount Kilimanjaro in 2017. Poundland suppliers are always keen to support (especially with Christmas hampers) and with sales promotions around World’s Biggest Coffee Morning time in September.

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Paul was contacted by Lesia at Macmillan as she had a number of Christmas hampers to donate to his patients at the Queen Elizabeth Hospital in Birmingham.  Paul is a valued member of our Local Cancer Champions Board and knows very well the amazing work our volunteers do with their partners here at Sandwell Advocacy on the Sandwell Cancer Older People and Advocacy project so when he realised he would have a number of surplus hampers he asked if it would be possible for us to distribute the remaining hampers to Sandwell Cancer Older People and Advocacy partners.

After a few phone calls, Lesia confirmed it would be appropriate for us to share the hampers and we made arrangements to go over and collect them.  We have a new volunteer David, who to date has not been matched with anyone.  He is chomping at the bit to get started and was really happy to help with the collection and delivery of hampers.

Juanita

Juanita

Imagine the delight when our volunteers delivered the hampers to their partners.  They were full of all kinds of items from tea towels to Santa hats, chocolate bars to chewy sweets and crisps to candles. One of our partners is nursing her husband back to health as he has recently lost over a stone in weight.  She commented that the tins of soups and chocolates would certainly go some way to fattening him up for Christmas!

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It’s fair to say there were a few tears of joy shed in Sandwell! The Sandwell Cancer Older People and Advocacy team would like to take this opportunity to wish you all a merry Christmas and thank all of the staff and customers at Poundland for their kindness and generosity to people who are affected by cancer. Let’s hope they break the £3m target and continue this amazing show of generosity.

Juanita Williams, Volunteer coordinator.


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My cancer journey

Our thanks to Rod, who shares his story with us below:

Hello my name is Rod and I have recovered from cancer. I was diagnosed with testicular cancer. It was a bit of a surprise but when my wife told me that my left testicle felt like a walnut I thought I’d better get this checked out.

I had surgery to remove the testicle, a very quick operation by the way, and it only took a day before I was walking around again. What I found most difficult to deal with was waiting to find out, I found that more difficult than the treatment. I eventually went to see the consultant and he informed me that the testicle was cancerous and that I would have to undergo a course of treatment. The treatment made me feel sick all of the time and after the first session I got back home and threw up! They prescribed me a course of anti sickness tablets but they made it worse! In all honesty I wasn’t scared about having cancer, my friends were more worried than I was. Don’t get me wrong I wasn’t happy about having cancer, but I couldn’t change it, I just had to live with it.

Just because you have cancer doesn’t mean that how you live your life has to end. Friends tried to wrap me up in cotton wool and protect me. I was a bit physically limited in what I could do (feeling weak all the time) but I wouldn’t let it stop me from going out and enjoying myself.

The consultant said that is was possible that the cancer could spread through my lymphatic system so the course of treatment was shortish but aggressive. What surprised me the most was still being able to have a physical relationship with my wife, which resulted in the birth of our twins, one of each, I was dead chuffed.

A while later I thought something was wrong again, as I was having constant diarrhoea. Consequently I had a endoscopy, which found nothing, and then a colonoscopy, where various polyps were removed. When I next saw the consultant he informed me that they were in the early stages of change. This time I was a bit worried, as this is what my father had died from. As it turns out I was fortunate, as this was caught early and very recently I received the all clear.

 

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Rod

My volunteering

I am currently unemployed and signed off until April 2017. As a consequence I have plenty of time to spare. I was looking through the doit.org website and came across the peer advocate position, with Sefton Pensioners Advocacy. Certainly when my father was diagnosed with cancer there seemed little or no help or support, which really hadn’t changed that much when I was diagnosed.  I felt that through my own cancer journey and other members of my family I had something to offer in terms of support and guidance.

I have had two clients so far and they have very different stories. Although they are my clients I prefer to just think of them as people that I am supporting. They have both been unique, facing different issues and challenges. One client has already recovered from one form of cancer, only to find out that she has another. There are other complications as well, mostly to do with chronic pain, which she is having treatment for. The main issue this lady has is with mobility, as she had no blue badge she found it difficult to get around as she was limited to where she could park. I successfully applied for her blue badge, which has completely changed things for her, she can now drive to the local village and park outside the supermarket to do her shopping. She is really, really pleased with this as it has given her a greater sense of freedom. Her details were forwarded to the DWP and now she and her husband both receive attendance allowance. Now they can afford to have the house cleaned and garden maintained, which is very important to them both.

My second client has been completely different. He was diagnosed with lung cancer, which had spread to his brain and his diagnosis was terminal. His eyesight was also failing. His behaviour was challenging at times but a lot of this was sheer and utter frustration at not being able to express himself fully. I first visited him in hospital, with a colleague, and his behaviour was challenging. To be fair he had been in hospital for the best part of a month. Eventually he was discharged and he returned home and I was able to support him in terms of getting there, making sure a hospital bed was installed (he had been sleeping on the floor) and ensuring food was delivered (thank you Foodbank). However this only lasted one night and he was then readmitted to hospital. He was then reassessed and admitted to a nursing home. He was much happier with this as he had the space of the whole lower ground floor and a greater sense of freedom. I was able to support him in terms of getting more clothes and taking him to his property, to help him sort through his important documents and things.

He was initially worried about his funeral and also getting in contact with his estranged daughter. On investigation it became apparent that he already had a funeral plan. I helped him to make contact with his daughter again and also arranged for him to have regular communion. During the days before his death he deteriorated drastically, not communicating at all. As he was on morphine every three hours this was hardly surprising. Although I knew he had terminal cancer I still found it a shock when his nursing home informed me that he had died at 6:30am that morning. There were things that I still wanted to guide him with. I have an immense feeling of frustration that I was not able to help as much as I could, but sometimes things just work out that way. The final thing I could do for him was to make sure his daughter was aware of his final wishes and thus I made sure to communicate these to her.

I attended his funeral to pay my last respects.SPAC

Advocacy for me so far has been, challenging, frustrating but ultimately rewarding and will continue to be so.

Rod, Sefton Pensioners’ Advocacy Centre


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The Relate Macmillan Counselling Service is now available in the West Midlands

Macmillan Cancer Support has formed a partnership with Relate West Midlands to offer free relationship counselling to anyone affected by cancer. It’s a regional project for the West Midlands and is open to residents of Birmingham, Solihull, Wolverhampton, Sandwell, Dudley, Walsall and South Staffordshire for 3 years (up to April 2019).  Here the coordinator tells us about the service:

I’m Eileen Clews and I’d like to introduce myself as the Coordinator of this new service. It’s a job I’m delighted to have because cancer can have a huge impact on families and friendships.

When we talk about relationships, it’s not just about your other half. It can also be about brothers, sisters, mums, dads, and carers. The people around us make a huge difference to how happy we are, and strong relationships can help us get through life’s tough challenges, like cancer. 

Eileen Clews

Eileen Clews

Some of the people who come to see us are single and don’t have a lot of family, we work with them on strengthening the support they do have around them.  Others are partners or relatives who find an hour a week to talk to a counsellor about their concerns very helpful. The majority of those we see are patients or ex-patients as we are there to help whether the diagnosis was recent or some years ago.

When you come to see a counsellor the first appointment is always a consultation. This is to find out a bit about the issues and ensure we are the right people to be seeing you at this time.  After this there are 7 further sessions available.

At the moment we are offering appointments at Birmingham, Wolverhampton and Solihull Relate offices but if we get enough demand there is the possibility of using our sites in Dudley and Oldbury.  Unfortunately, we can’t come and see people in their own home but we can offer Telephone Counselling if people can’t get to us.

While many of the referrals to the Relate Macmillan Counselling Service have come through the NHS, you can also refer yourself.  To do that or simply find out more about what we offer contact me on 0121 643 1638 or by email macmillan@relatebirmingham.co.uk

Very soon after I was in post, Sandwell Cancer Older People and Advocacy (SCOPA) came forward to tell me about what they do and recruit me onto their Steering Group! I am very happy to be part of this and am impressed with the work they are doing in Sandwell.  This is an area I have worked in before when I ran a project for The People’s Orchestra in West Brom (not a musical one, that would not have gone well). While the geographical area for this new counselling service covers most of the West Midlands, I am hoping that we will get some referrals from Sandwell and surrounding areas.

If you know of anyone who might benefit from some relationship counselling, who has been affected by cancer, please do tell them about the Relate Macmillan Counselling Service.

There are further details on our website

http://relatebirmingham.co.uk/our-services/the-relate-macmillan-counselling-service/


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Facing Cancer Together: we’re demonstrating the power of independent advocacy

We’re really excited today to announce the publication, in partnership with Macmillan Cancer Support, of our latest collection of older people’s cancer advocacy stories entitled Facing Cancer Together.

In 2014 we published Every Step of the Way, a set of patient stories which illustrated the need – and value – of peer advocacy services for older people living with cancer. In this, our second publication, we bring together a further twelve stories of overcoming struggle, loss and anxiety, illustrating a new reality of what older people living with cancer can and should experience.

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But these stories also speak to a broader societal truth, and contradict the common narrative that the pressure from an ageing population with increasingly complex needs is overwhelming our health and social care system. At the heart of that narrative is a prejudice that older people are somehow too needy, too frail, too dependent and a burden the rest of society is expected to carry. This kind of prejudice robs older people of voice, choice and control. Advocacy – such as in the stories contained in Facing Cancer Together – seeks to return them.

When we read stories like these, we aren’t just reading about the experiences of one older person with cancer; we’re also being gifted rich insight on the big challenges facing policymakers, commissioners and practitioners, such as how to deliver high quality, compassionate, person centred care that enables people to be equal partners in their care; and how to tackle marginalisation, social exclusion and uncertainty; and how to manage the impact of cancer
on family, or emotional health, or housing.

Those challenges are for us all, regardless of age, and the methods of addressing these challenges, by investing in peer advocacy and support, greater community engagement and creating the motivations of staff to involve patients in their own care have a net benefit for all of society.

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Stories are powerful not least because they have the capacity to tell us something about ourselves.
The twelve stories in Facing Cancer Together represent the wide range of experience that our advocacy programme
has encountered across 1500 plus cases over the past five years.

 

We hope that they most of all resonate as examples of the actual support available to provide reassurance, companionship, dignity and, most importantly of voice, choice and control.

We want to thank all of those who were willing to share their stories with us, and the many advocates involved in
the programme.

Jagtar Dhanda, Head of Inclusion Macmillan Cancer Support & Kath Parson Chief Executive OPAAL