Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Celebrating our brilliant volunteers

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

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

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

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

Age Connects

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

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

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

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

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


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I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity.

Did you know that as part of our work we’ve developed Quality Standards for the provision of advocacy support for older people affected by cancer? The standards set out what clients should expect when they receive independent cancer advocacy services.  They are the standards that are demonstrated on a day-to-day basis by good older people’s cancer advocacy services.

The standards are a way of us reinforcing and demonstrating professionalism and commitment in our cancer advocacy service delivery. There are organisational, partnership, monitoring and evaluation, service provision and training, supervision and support standards. Each standard contains a series of statements that, taken together, signify what a good older people’s cancer advocacy service looks like.  It puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.

ICANN is the first of our delivery partners to go through the cancer advocacy Quality Standards audit process and we’re delighted to say, the first to receive their compliance certificate from OPAAL. Many congratulations to them.

ICANN QSCertificate

In today’s blog post, Sandra from ICANN tells us about the process:

As a volunteer with ICANN based in Preston Lancashire, I was flattered to be asked to consider looking to see if ICANN is meeting the Quality Standards for the provision of advocacy support for older people affected by cancer. Was it something I might like to have a look at, as to whether we would be eligible to apply? As always Janet treated me as a volunteer so no pressure however a chat over coffee and I was happy to have a go.

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I spent a couple of hours at home looking through all the audit requirements and going through all the data on the ICANN website that I thought would fit. I was pleased to see that ICANN could measure up to meet most of the requirements and was aware in a couple of areas there would be more material available by talking to other volunteers.

Sandra

Sandra

I set aside a Monday morning with Janet in the ICANN office and we went through all the standards categories filling in some of the blanks. Only one area needed to be addressed which we talked to the CEO about. Later I also spoke to two other volunteers for help and input in their speciality areas, which was very useful.

A few weeks later I spent a further two mornings in the office mostly spent writing up a fair copy, and checking policies and procedures were as requiredI am pleased to report that the area missing is now in place. I found it useful to complete most of the work in the office as Janet and Pat (Admin) were on hand to help with any queries.

I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity. Going for the Quality Standards is the right thing to do and I did not find it too onerous.

Sandra, ICANN


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“Knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless..”

Today we hear from Alan (not his real name) who has been receiving peer advocacy support from delivery partner Age Connects Cardiff & the Vale

I am a 76 year old gentleman who has recently started receiving support from the Cancer Older People and Advocacy project. To say I was in a bit of a state is an understatement.  Sadly my wife passed away in December from a brain tumour, to which we knew nothing about.  My wife and I were also carers for our grandson who had learning difficulties and he also had cancer, sadly he too passed away very suddenly in March.  My life has in a matter of months, been turned upside down and ripped apart.  I have limited family that live close by, so I’ve been struggling with how to cope and deal with the day to day issues of life.  I am also awaiting an operation myself for a knee and hip replacement and am in a great deal of pain.

HANDSMy Social Worker was the one who learnt about the Cancer, Advocacy and Older People’s Project and suggested we ask for some support.  I was reluctant at first as it meant explaining my pain to someone all over again, but I knew I really needed help and my Social Worker, however lovely she was, had very limited time.  I met a really nice gentleman from the Cancer Older People and Advocacy team who was a volunteer.  He was able to assist me with the mountain of paperwork I had accumulated, as this was really getting on top of me and the debt letters were beginning to come in.  He also assisted me with the practical things such as where and who I could donate my wife and grandson’s belongings.  He was someone to chat to also, someone independent who didn’t judge, he just listened and understood my pain. 

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He also accompanied me to hospital appointments about my own health which was hugely supportive.  After being a carer for so many years, all of a sudden being alone is a huge shock and adjustment. 

I continue to receive support as I still have a mountainous pile of paperwork, again! But knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless.

If you know someone who might benefit from peer advocacy support why not check out if we’re delivering services in your area by clicking here. Do get in touch.

Angela Jones, Age Connects Cardiff & the Vale


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Gay and ageing – breastfallen

Today we’re delighted to reproduce a personal blog post by Roger Newman, a great friend and supporter of OPAAL. It was first published yesterday on Roger’s own blog site:

CHAPTER 1

You know how it is when you’re sitting in the beautifully warm sunshine of an Atlantic island, and at the end of December too! Your mind plays its usual tricks and your past, present and future all move around your brain inconsequentionally.  People, seemingly long forgotten, suddenly appear; events nag their way into the memory producing a cocktail of smiles, feelings of sadness and guilt; and coupled with it all is that priceless feeling of well being . The sun’s rays do their trick and you feel so relaxed as you smooth your body blending together its mixture of sun tan oil and sweat. It has been like that for 10 years now and I happily tell myself that I am lucky, so, so lucky to be here on the island, and may it always be so.

This afternoon as I  rub my chest and gently tweek my nipples, on my right side I feel something unusual. Just a small piece of a flower blown off a shrub by the wind, no doubt. I  close my eyes and continue with the serendipity. A minute goes by and I brush myself but feel it again. It is different, and this time, there is no doubt – it is real. There it is, beneath my right nipple, something distinct, hard and not moving.

I remembered the same feeling on a November day some 18 years before. I had been listening to a radio programme broadcast during breast cancer awareness week. ‘Men get it too’ the announcer said. I felt myself then, and sure enough, there it was, a small lump. Panic! Total fear! But actually, after diagnosis, all was well. It was a fatty lump and was removed, and I never heard about it again afterwards. This time, however, there was something different about it.

CHAPTER 2

On return home a visit to a consultant was arranged. He examined me and told me that he felt it could simply be the residue of my body’s reaction to some medication I was taking, but it was best to do some tests.

From now on my experience of diagnosis took me into a new world, and I had to get used to the fact that it was a  world which was not a man’s world. As a gay man I had not previously felt what might be called a typical heterosexual gender divide, it had not previously been an issue but now, to my surprise, it did. Even the language I used about my body took on  what I would have called a feminine aspect. What I had called my ‘chest’ now was called my ‘breast’. In the body imaging department I felt curiously out of place as I waited for my mammogram. The nurse taking the image clearly wasn’t experienced enough to cope either and she had difficulty suitably arranging a man’s body, whose nipples may have been slightly out of the ordinary, but whose breast hardly fitted a machine which was normally used to photographing something much more pendulous and flexible.

The resulting mammogram was insufficient and an ultra sound was called for, but that didn’t show much either, and a biopsy was next on the list. So with just a few bodily bits missing I prepared for another visit to the consultant. There we sat, my partner and me, two men, in a waiting room of women – a brave new world.

In he came, accompanied by a nurse. Smiles and handshakes. None of this, ‘how are you?’ business, which later I came to react to from others, quite a bit. Instead we went straight into it. ‘I thought you had the consequence of medication you were taking, but the biopsy has told me differently and I’m sorry to tell you that its breast cancer.’

‘What????’ ‘For **** sake! I, me, doesn’t get potentially terminal illnesses! I’m here on this earth to be by the side of those who have things like that. I’m the buddy of the man with AIDS. I’m the friend who stands with the carers of those with dementia. I’m the one who conducts the funerals of those who didn’t make it. BUT I am not the one who gets the finger!!!! Hasn’t god ordained it to be like that?

Worse news was to come. A mastectomy would be necessary. Perhaps further surgery to remove lymph glands. Then perhaps radiotherapy, chemotherapy and god knows what else. Partner and I look at each other, unable to mouth what we are feeling, but at least we are together in our grim silence.

Nigel and Roger

Nigel and Roger

CHAPTER 3

How on earth do single people; those without partners; those alone. How do they deal with that news? How do you focus, and even move forward following such news. It’s good having someone else there with you, better than nothing, but there comes a point when you are left alone, alone to cope with such challenging news. Your friend has their own home, their own life to lead; they cant stay with you for ever. How do you deal with the solitude after they have left, when the sympathetic phone calls haven’t helped, when you wake in the middle of the night and the horrors about your future hit you.

I immediately thought of my friend David who had lived with liver cancer for well over a year. He had not lacked visitors or phone calls, but who as I now realised, nevertheless, had much more time alone to cope with his condition after his visitors had gone.

Look, folks! There is an LGBT issue here. We are many – more of us in the 45+ bracket than in the 15 – 44 bracket. We are more than likely to be living alone. Perhaps a third of us will experience cancer. Many of us will die from it. Where are the mentors, the advocates, the befrienders, the social workers and nurses, who understand our distinctiveness, even our uniqueness, and can be there by our side to see us through. In the night watches, when I awoke and considered my position, I gave thanks that I had someone I could say ‘cuddle me’ to, and I thought of those others within our LGBT community who have to face all this alone because we have not mobilised our forces/resources to serve their needs.

CHAPTER 4

I’ve always been different and so not surprisingly my cancer would have to be different too; wouldn’t it! There are only about 300 men per year who get it and I expected that this would mean being left without support, but, hooray, I was wrong. Our first meeting with the breast cancer nurse was accompanied by a superb and informative booklet on breast cancer for men and I soon gladly came to realised that I was not being treated as an honorary woman, with a women’s condition, but as a man who just happened to be amongst a very small but increasing number of other men who are succumbing to the same condition as thousands of women.

That is not to say that there are not psychological issues which may be peculiar to men . I was told that some men have real problems coping with the sheer fact of their different cancer. Perhaps even some might wish they had prostate cancer rather than breast cancer; they at least would have a ‘man’s cancer’. I noticed even within myself that when I told people I left a short gap between the ‘I have’ and the ‘breast cancer’ part of my speech. Perhaps even I felt something not quite right about having it. I was shocked after surgery by how unwilling I was to look at my new self in the mirror, and, when I eventually did it, how upset I was by the sight.

I meet people who still do not know that men can get it too, and I suspect that some might even feel that I had done something wrong, like smoking, to get it. I would love to meet other men in the same situation, but so far, I have found none. Perhaps the enormity of their burden has led them to go to ground. I wonder then if there are any other gay men with the same condition and wonder if I could even be only one in this country.

CONCLUSION

And so it has gone on. The surgery is complete and we (thank god its a ‘we’) have decided on the treatment which is best for us in our situation. From now on, every day will be a bonus day but these days will not be like the other days before the diagnosis. I’m still discovering how you think positively about the future most of the time; how you make a continuously proactive response to living ; AND how you confidently take your place within the male gay community with only one nipple!!!!!!! All things are possible, eh?

Roger Newman


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How our steering group helps us to network and build partnerships

Our Local Cancer Champions Board, the steering group for Dorset Macmillan Advocacy, changed its name in 2014 to Cancer in Older People Development Group.  Members wanted to create a group that could, in addition to overseeing our service at strategic level, bring together people interested in improving patient experience for people over 50 affected by cancer and their carers. They felt that the new name was more self explanatory and we are fortunate to have an interesting mix of people on the group.

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As Dorset Macmillan Advocacy is delivered by two organisations in partnership the steering group sought to meet alternately on different sides of the county.  Meetings have been hosted since 2014 by Lewis Manning Hospice in Poole and since last year by Joseph Weld Hospice in Dorchester.  We have benefited from learning about the hospices and our presence there has raised our profile with their staff and visitors.

We also invite local guests to the group meetings such as the project lead for the Macmillan Information Scoping Project which took place last year and the director of Dorset Living Well Active, a physical activity project which is a partnership between Macmillan and Sport England.  The group can explore joint working at both strategic and operational level and this really enhances the daily  networking that staff and volunteer advocates do.

The new Chief Executive of Weldmar Hospice Care Trust, Caroline Hamblett, joined our last meeting in May and described the variety of community services that the hospice provides. Senior Sister Sally-Anne Baverstock then gave the group a tour of the facilities which include 14 in-patient beds all with views over the beautiful garden and countryside beyond.  We’ll arrange a visit for our team of volunteer advocates in the near future.

Steering group visit Joseph Weld Hospice

Pictured left to right are Sally-Anne, Paul Hickman, Chair of Trustees at Help and Care, Emily Brown, Senior Volunteer Coordinator at Dorset Advocacy, Jenny Rimmer, Macmillan Senior Advocate at Dorset Advocacy, Bob Smith, volunteer advocate.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 


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This lady had told me that without the support of an advocate her situation was so desperate she would have committed suicide

Today Helen Vernon of Sefton Pensioners Advocacy Centre explains about a recent event hosted by Macmillan Cancer Support in the North West:

In May we were given the fantastic opportunity to present the Cancer Older People and Advocacy project to Lynda Thomas, Chief Executive of Macmillan, and John Pearson, Executive Director Cancer Support Operations.  Lynda and John were visiting the North West and it was decided by the Service Development Team that the best way to showcase all the local initiatives was by holding a stallholder event.

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Our display stand

I arrived at the event, complete with our specially purchased display board, packed with information about the project and the publications we have produced.  Each stall holder had 5 minutes to present their project and the stalls were arranged in order of the cancer journey.  It was fascinating to hear about all the inspiring innovative projects that exist but a little frustrating that we couldn’t access them because of their boundaries.  Lynda and John listened to each presentation and then were given the chance to ask questions.  One of the main themes they focused upon was the way in which the learning from each project could be shared in other parts of the country.

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I ended my presentation with a quote from a service user.  This lady had told me that without the support of an advocate her situation was so desperate she would have committed suicide.  The impact of this statement was evident around the room and I think it emphasised for them the importance of advocacy.  John was interested in where we got our referrals from and he offered to put us in touch with contacts he has in The Silverline and other voluntary organisations.  We will be following up his interest in the project and keeping him informed as to how it develops.

Helen Vernon, Sefton Pensioners Advocacy Centre


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Patient experience can improve the lung cancer pathway

Today Kathleen Gillett of Dorset Macmillan Advocacy tells us about an online survey on what matters most for people affected by lung cancer and their carers:

People can use their experiences of health and social care, good or bad, to help make things better for others in the future. In health this is called ‘patient experience’ and the patient point of view is often sought through ‘patient engagement’ methods such as events or surveys.  Patient groups and voluntary organisations sometimes call this ‘user involvement’.  I’m still getting to grips with these concepts and it helps my understanding to try to explain them in plain English.

A national survey of cancer patients takes place every year called the National Cancer Patient Experience Survey and the latest survey should be published in the next couple of months.  It contains useful data right down to individual local hospital Trust level.

There is currently a survey open specifically for lung cancer patients and carers (as well as a version for Health Professionals).  The survey is being carried out by the UK Lung Cancer Coalition (UKLCC) which is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.

Established in November 2005 to help to bring lung cancer out of the political, clinical and media shadow the organisation’s long-term vision is to double one year lung cancer survival by 2015 and five year survival by 2020. The ambition is underpinned by four key objectives including; to empower patients to take an active part in their care.

The report of the previous UKLCC survey which took place in 2013 Putting patients first: Understanding what matters most to lung cancer patients and carers will serve as a baseline to compare with the results of the new survey as many of the questions are similar.  The Foreword to that report said the survey had ‘highlighted the need to promote and embed a more patient-centred approach to lung cancer care.

At Dorset Macmillan Advocacy we are looking at how we might better support people affected by lung cancer.  We are talking to colleagues in the Health service about providing advocacy support to patients with suspected lung cancer to enable them to access the many important tests that they need as quickly as possible.  These tests may take place at different locations and there might be several in the space of a week.

We were recently able to provide an advocate at quite short notice to accompany a person to a scan. The time spent waiting for the scan was usefully spent uncovering concerns and preparing questions so that at the consultation which followed the person was able to be proactive.  We received very good feedback about the effectiveness of the volunteer’s support at this appointment from the patient, the consultant and the patient’s GP.

As an advocacy service we can amplify the voices of the people we have supported to date who are affected by lung cancer by asking if they would like our help to take part in the new survey (it is available online and can be downloaded as a paper document).  We can also ask local Clinical Nurse Specialists for Lung cancer if they are completing the survey and let them know that if they have patients (or carers) who would like to take part in the survey but need help to do so then we may be able to offer support.

The survey is available via the pink coloured bar on the right of the UKLCC home page and the closing date is 27 June 2016.

Kathleen Gillett, Dorset Macmillan Advocacy