Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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


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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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Our volunteers visit the Queen Elizabeth Hospital

In today’s post our colleagues at Sandwell Cancer, Older People and Advocacy service tell us about their recent Local Cancer Champions Board visit:

At the start of 2016 we decided to liven up our Local Cancer Champions Board meeting and we invited our members to each make a pledge to the project.  This could have included showing the OPAAL films at staff meetings, talking to colleagues about Sandwell Cancer Older People and Advocacy or writing a blog. Mr Paul Litchfield, the Cancer Information and Support Services Manager at The Patrick Room, Queen Elizabeth Hospital Birmingham invited us to bring our volunteers over to find out more about what’s on offer for cancer patients in Sandwell and Birmingham.SCOPA-logo 

Eight of us made our way over by car and taxi and were very pleasantly surprised to find the fortnightly Queen Elizabeth Hospital Farmers Market was in full swing!  What a delight for the eyes and feast for the belly!  The first thing we smelt was delicious curry goat, rice and peas, a Caribbean favourite. We can only imagine the happiness someone would get if their visitors were to bring that up onto the ward at visiting time.  There were delicious fresh fruit smoothies and juices, freshly baked breads and cakes, jams, chutneys and pickles, pies, pates, meats, cheeses, teas, veggie meals, cakes, wraps, snacks, deserts and both local and exotic fruits.  Unfortunately we didn’t have time or we certainly would have spent a good hour wandering around.

Apparently there are always fruit and vegetables available for visitors and patients but this was an additional and amazing array of organic and homemade delicacies.  Certainly just what the doctor ordered.  We take our hats off to the organisers of this great market and I am sure we will be back.

Once inside the Cancer Centre we were greeted by Paul Litchfield who was our host for the day.  He had arranged refreshments for us on arrival and took us up to one of the training rooms where he explained all about the new state of the art hospital and all the services run in and around. 

The latter part of the session was taken up with case studies and some of Paul’s personal stories about his work.  Having been in nursing for more years than he was willing to admit to he certainly kept us entertained and gave us all lots to think about in relation to how times have changed and what the future might hold.  He also gave us some startling statistics and facts about cancer and specifically the Midlands area which has an increasingly diverse community.

The volunteers who have themselves had cancer were familiar with the setting and said it brought back many memories.  Those who had not been before found it extremely interesting and useful.  Paul extended his support to everyone and offered to be of assistance should any of our advocacy partnerships require his help and knowledge. 

What a great day out with people who are really making a difference and a fantastic pledge of help from one of our very own champions Mr Paul Litchfield.

Further details about the Patrick Room, Cancer Information centre can be found on http://www.uhb.nhs.uk/patrick-room.htm

And details of the Farmers market (for all you foodies) can be found on www.uhb.nhs.uk/farmersmarket


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The Big Conversation

Every year in May, Dying Matters and its coalition members host an Awareness Week, which gives an unparalleled opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda.
It’s Awareness Week this week and it runs from 9-15 May with the theme ‘The Big Conversation’.

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Did you know that research carried out during last year’s awareness week discovered that:

  • 71% of the public agree that if people in Britain felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met
  • Just 35% of adults said they had made a will
  • Just 27% had let someone know their funeral wishes
  • Just 7% had written down wishes or preferences about the care they would want if they couldn’t make decisions
  • Just 18% had asked a family member about their end of life wishes

Our colleagues at Dorset Macmillan Advocacy are supporting Dying Matters week. Their display stand is promoting Advance Care Planning and the Cancer Older People and Advocacy service in Christchurch library all week.

Dying Matters Week DMA display at Christchurch Library

You can join in The Big Conversation by looking out for and attending local events.

  • You can also follow Dying Matters on Twitter, Facebook, LinkedIn, YouTube and Pinterest. 
  • You can Tweet about it, always including the hashtag #BigConversation.
  • You can also join in the #BigConversation on Twitter. Between 1-2pm GMT every day of Awareness Week Dying Matters will be hosting a Tweetchat on a variety of topics relating to dying, death and bereavement – and they’d love you to join in. Find out more

To find out more and see how else you can support The Big Conversation, click here

Marie McWilliams, National Development Officer, OPAAL