Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Spreading the word

In today’s post we hear about a well spent Summer’s day in Northumberland….

On Wednesday 30th August, Age UK Northumberland enjoyed a sunny day in the Sanderson Arcade in Morpeth promoting their Macmillan funded cancer advocacy project.

The Sanderson Arcade is a smart shopping centre in the heart of a beautiful market town in Northumberland. With a population of over 16,000 Morpeth is particularly busy on a Wednesday which is a market day with people visiting from all over the county.

 

 

 

 

 

From the moment the gazebo was erected until the end of the day visitors to the stand were frequent.  Lunch time was particularly busy. With a key position next to the entrance to Marks and Spencer in the middle of the thoroughfare there really was no way to avoid our presence!

Our new leaflet explaining the project was handed out to passers by, queries about our services were answered and our pens, key rings and sweets were eagerly received!  One of our volunteers, an ex-cancer radiologist put up a display about radiotherapy which was particularly well received with a number of people asking questions about the process.

This was a wonderful opportunity to explain to people how Age UK Northumberland’s Cancer, Older People and Advocacy Project works and what being an advocate entails. Knowing that someone can accompany you to appointments or can help you identify benefits and allowances you may be entitled to was of particular interest to those who had or knew of someone with a cancer diagnosis.

 

 

 

 

 

The success of the stand was made possible by the stalwart support of our volunteers who all stayed well beyond their allocated slots.  Their enthusiasm and willingness to share their knowledge and passion for the project was clearly visible.  All in all, a great way to spend a summer’s day!

Karen Renner

Volunteer Coordinator – AGE UK Northumberland Cancer Advocacy Project

 

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As Volunteers Week draws to a close…

Our Cancer, Older People and Advocacy programme would never have achieved what it has without our amazing volunteers. They’ve supported us as peer volunteer advocates as well as local and national cancer champions.

Those who have been directly affected by cancer themselves have determined to give something back, to support others going thorough the same trauma and to help ensure older people don’t face their cancer journey alone.

Some of their stories are told in Time: our gift to you, our most recent publication. Today, as Volunteers’ Week draws to a close for another year, we’d like to share Claire’s story with you:

I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.

Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

One of the older people affected by cancer that I’ve supported is Sally (not her real name). She was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Sally lives alone, struggles to get out and had become very isolated and depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

In the first few weeks when I visited Sally at her home, we often would just talk and share experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

Since then, I have been able to help Sally in a number of ways. For example, I contacted Breast Cancer Care, I knew how good they were from my own experience, and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Sally suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Sally had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the Macmillan Cancer Support website. Sally doesn’t have a computer or access to the internet. I took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.

Most recently I was able to help Sally with her application for a one-off Macmillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her and I could use my experience to help with the spellings of all the drugs she was taking! She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

I hope that I have managed to convey that working with Sally has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system and how to get support. I am really glad to be able to put my experience to good use.

Our final thought this Volunteers’ Week is the adage: “Volunteers are not paid, not because they are worthless but because they are priceless.” So thank you to volunteers everywhere.


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At the Staffordshire Dying Matters conference

Kath Curley of Cancer, Older People and Advocacy delivery partner Beth Johnson Foundation and Staffs & Wolves Cancer Advocacy and Support Project Manager shares a post recently published on their own project blog. She tells us about her attendance at a recent conference marking Dying Matters Week:

Dying Matters Week in Staffordshire was celebrated by a Palliative and End of Life Conference organised by University Hospitals of North Midlands on Thursday 11th  May. The Conference was entitled “I didn’t want that: Why patients’ wishes matter” and was attended by over 250 delegates from across the Midlands. BJF had a stand to promote the dementia and cancer advocacy projects and was therefore able to join the Conference.

The conference was packed

There were some eminent speakers including Dr Sara Russell, Head of Research and Clinical Innovation at Hospice UK, who showed a very thought provoking film from ZdoggMD; “Ain’t the way to die” which you can find here  

Sara’s message was that professionals should be asking “What matters to you?” rather than “What’s the matter with you?”

Amanda Cheesley, Professional Lead Long Term Conditions and End of Life Care with the Royal College of Nursing followed on and very much reiterated Sarah’s messages.  She opened by talking about the “essence” of the person – who we are, what we are – doesn’t go away when someone  dies or is dying. We should look at what is important to people emotionally, physically and spiritually.

 Jan Cooper, Regional Liaison Advisor at the General Medical Council discussed the End of Life/ Palliative Care Guidance. Decision making should be a partnership and this will require a change of culture. At one time professionals made the decisions, then it swung to patients making the decision but it should be co-production – joint decision after listening, discussing and sharing information.

 

After lunch there were two more “professionals “   presentations from Claire Henry – the Chief Executive Officer of the National Council for Palliative Care and Dr Katherine Bristowe , a post-doctoral  researcher at the Cicely Saunders Institute, Kings College, London. She has a particular interest in widening access to palliative care, and recently worked on the ACCESSCare project (funded by Marie Curie), a national qualitative interview study of LGBT people facing advanced illness and bereavement.

At this Conference the best was most definitely left until the end. The Conference closed with a presentation from Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices. He was a carer for his late mother Joan for 5 years as she had vascular dementia. He told us about his beautiful mother, Joan Whitelaw, NOT the disruptive lady in bed 6! He talked about his experiences with health professionals during his time as  a carer and the importance of reassuring carers that they are doing a wonderful job. 

Tommy travels across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers to carry out their difficult but vital role. Lessons to be learnt for people caring for someone with any terminal condition. There was not a dry eye in the Conference!     

Joe Potts, Macmillan End of Life Care Facilitator, University Hospitals of North Midlands  is to be congratulated on a stimulating, thought provoking conference – a job really well done. 

Kath Curley, Staffs & Wolves Cancer Advocacy and Support Project Manager


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My night at the UK Blog Awards

Kath Parson, OPAAL Chief Executive, tells us about her exciting night at the UK Blog Awards:

It began 24 hours beforehand wondering what to wear of course! The invitation said formal so long dress with all the trimmings, shoes, bag and jewellery to match.

Enjoying the evening

The event took place at the Westminster Park Plaza London in the shadow of Big Ben. I knew it would be a special night as the paparazzi were out in force clicking away at every gorgeous girl alighting from the fleet of taxi’s lining the entrance.

Once divested of coats we were directed to the huge ballroom three floors below street level. My first surprise the sheer number of people, around 500 guests mingling and networking amongst the many attractions provided by headline sponsors The Odeon. The second surprise was the average age of the guests, I definitely felt like an old lady as most people were in their late twenties early thirties. No doubt a reflection of those who drive social media today. I met many fantastic and inspiring people all keen to learn about our blog. I’m sure I’ll stay in touch with several.

The event was sponsored by Odeon

Wonderful hospitality, we were wined and dined like kings. Then came the main business of the event, the awards ceremony itself.

Opened by Gemma Newton, CEO, UK Blog Awards, Chrissie King, Online Influencer and Charly Lester, Head Judge we were told there were 2,400 entries, and 94,000 public votes. Entries were whittled down to a short list of 240 all read by no less than 42 judges across the dozen of more categories. For each category there were individual and company winners.

We were in the Health & Social Care category company section and up against stiff competition, seven amazing blogs all doing a wonderful job informing and supporting their constituency audiences.

We were in the Health & Social Care category company section

We didn’t win, but then I had not expected to. I am just so very proud of our partners and OPAAL staff that we had reached the final’s stage at all. We would not have a blog if the older people we support and our wonderful dedicated volunteers had not agreed to share their many inspiring stories with us, so my sincere thanks to all of you.

The winner in our category was Mentalmovement

I reserve a special mention for our Operations Manager Marie McWilliams who tirelessly manages our blog, well done Marie you can feel very proud of this achievement.

Finally I’d like to thank all those people that voted for us, without you we would not have reached the final. I’m already looking forward to UK Blog Awards 2018, so please keep those stories coming in.

Kath Parson, OPAAL Chief Executive


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World’s Biggest Coffee Morning ……. Again!

Juanita Williams, Volunteer Coordinator from Sandwell Advocacy’s Cancer, Older People and Advocacy (SCOPA) project paints a vivid picture of this year’s World’s Greatest Coffee Morning and what it means:

It’s September and to me that means one thing to me –  not the end of the summer, not the children and teachers going back to school – It’s the World’s Biggest Coffee Morning, raising money for Macmillan Cancer Support. 

I have been hosting coffee mornings since 2006 as my way of thanking Macmillan Cancer Support for supporting our family on my dad’s cancer journey.  I have raised thousands of pounds for Macmillan over the last ten years but I have had so much back. Every time I do something for them, another opportunity seems to come my way which enriches my life.  I suppose that’s what happens for the volunteers here at SCOPA.  They came along to give something back and in return they get a sense of achievement knowing they have made a difference to someone’s life. It’s a really positive and rewarding cycle.

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I know I have written blogs about it before as have many other Cancer Older People and Advocacy projects but the events are always so different.  Firstly, every year we have a new Mayor.  This year we were joined by Cllr. Julie Webb.  She spent lots of time talking to local residents and volunteers about the work of SCOPA and Macmillan.  She is very aware of how cancer affects so many people in her ward, across the borough and the rest of the country. 

We also had a very special guest from Macmillan Cancer Support.  John Pearson is the Executive Director of Cancer Support Operations.  I met John for the first time back in 2014 when I was taking part in an “extreme” Macmillan Cancer Support cycling challenge over the Himalayas in India.  John and his wife were also cycling and camping on this really tough ride.  I think that’s what I really like about John – he works for Macmillan but he also raises thousands of pounds for the charity.  I’ve seen his Facebook pictures – he runs, cycles, sails, treks, hosts black tie events, serves water at marathon pit stops, gets up at ungodly hours to sell at car boots, barbeques, makes tea for little old ladies and sports a green afro wig with style when called for! And that’s in his spare time!

As a very active volunteer and fund raiser himself John totally gets what it is we are doing here in Sandwell on the Cancer Older Peoples Advocacy project.  It was for this reason I wanted to invite him to meet our volunteers and some of their partners who are being supported.  I wanted him to see what a huge difference SCOPA and Macmillan can make to an area like Sandwell.

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We opened the event at 10.00am.  It was an early start for myself and my friend Jenny who works at Sandwell Irish Community Association where we host the event.  Jenny does all the work over at the venue, making sure the room is booked, hiring materials to dress the room and sourcing prizes for the raffle.  I couldn’t do the event without her support.  The SCOPA staff team arrived next and set about making sure everything was ready for our guests to turn up.

 

Next to arrive was my mom, Cath.  Mom spends her leisure time crafting and always puts on a fabulous stall full of handmade gifts.  She has learned that it’s never too early to start selling Christmas items and this year’s creations included knitted handbags, felt flower brooches, Steam Punk boxes (you will have to Google that one as it’s too difficult for me to explain) and fairy houses.  The Mayor is always brought to the event by the Sergeant at Arms (chauffeurs to you and me). This year we were joined by Kennedy and he always informs the Mayor about the event prior to her arriving so she knows what to expect.

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Eventually all of our guests get to sit down and enjoy a nice cup of tea and a piece of cake.  We have so many talented supporters who bring along their cakes.  The cupcakes always look splendid stacked high on the cake stands but the Victoria sponges, chocolate sponges, lemon drizzle, rocky road slabs, banana loaves and coffee & walnut cakes are equally as delicious. This year we were treated to a magnificent chocolate cake covered in soft icing and Maltesers.  Apparently there were no calories in it at all (that’s what she said!) I can honestly say that the bakers of Sandwell never let us down. 

Sandwell council sent along one of the communications team to take photographs of the event. This year we were also joined by an apprentice who spent time photographing the cakes.  These all went onto Twitter, Facebook and to the local Express and Star newspaper.  We were a bit cheeky and we asked the photographer to take a few extra shots for us to use ourselves.  We plied him with cake and he didn’t refuse.

Throughout the morning the SCOPA volunteers, board members and staff were all on hand to make sure everything ran smoothly.  Some served refreshments, others washed up and some were simply there to listen – that’s what we do – and we do it well.  This year we were joined again by some of our partners, its lovely for all of us to meet with them face to face as often we only get to chat on the telephone. It’s always good to put a face to a name and a voice.

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We drew the raffle and you could hear a pin drop as people waited anxiously to hear if their number was being called.  The gifts had been generously donated to us and included orchid flowers, chocolates, champagne, toiletries and much more. In total we raised over £380.00 and this has been paid in and is on my Justgiving page.

Here at SCOPA we have built very successful relationships with our Macmillan colleagues, both on the wards and out in the community.  Their involvement is key to the promotion of our service and we really appreciate their help, likewise they value what we can do for them.  When we host a coffee morning we are able to promote the SCOPA project and get the word out to both professionals and the local community. I work with wonderful people who are all striving to make these journeys a little easier.  I can’t think of a better way to network and reach out to people – but that’s because I simply love a cup of tea and a piece of homemade cake! What a great job our SCOPA team are doing.

Juanita Williams, SCOPA


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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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Today we hear from Emily Brown, Interim volunteer manager and independent advocate at Dorset Macmillan Advocacy:

I am new to Dorset Macmillan Advocacy service, not to Dorset Advocacy, but I am a newby on this project.  I have been blown away by the dedication given to it by staff at Help and Care and Dorset Advocacy, the members of our Cancer in Older People Development Group and of course by all of those volunteers who give their precious time and share and draw from their own experiences in order to support those that need it.  I have come at an exciting and challenging time as we strive to illustrate the benefits, positive outcomes and impact of the service on the people we support…we know the impacts because advocates see this first hand, but how do we convey its importance to others when times are tough, and how do we show that advocacy can also be a benefit to the NHS?

Jenny Purcell and Karen Piggott of Dorset Advocacy were invited to speak at the Clinical Commissioning Group’s (CCG) lung cancer pathways information day last month.  They presented to a number of professionals on the benefits and impact of advocacy.  We often talk about the benefits of advocacy for the individual which is, without doubt, the most important thing but what is not always considered are the benefits of advocacy for the service providers.

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We have recently received an independent evaluation of our service which illustrates exactly this.  Essentially what the evaluation does is highlight how the introduction of advocacy support can help to ensure that the choices that the person makes are well informed, that the individual has a consistent person throughout their journey, and that as a result the input of advocacy can help the process to move more swiftly, advocates can ensure that people can keep to their appointments and that the individual’s other concerns are being addressed allowing them to focus on decisions about treatment. 

In fact there was a recent example with one of our cases when a health professional at Dorset County Hospital postponed an appointment by a few days in order for an advocate to be able to meet their partner and attend this appointment with the patient.  This action alone indicates to me that this health professional recognised the value in having an advocate present to support at the appointment.

Our work continues with the CCG in Dorset to initiate the introduction of advocacy as a recognised standard of good practice on the lung cancer pathway. We are not there yet but the evaluation along with our Case for Support will, we hope, enable us to convey the impact of advocacy and put together a pilot scheme that can illustrate the values of the service for the service providers as well as those who receive it.

Emily Brown, Dorset Macmillan Advocacy