I was first interested in the role because my own family have been affected by cancer

Today, Susan Chrisp from AgeUK Northumberland introduces herself:

I’ve recently joined Age UK Northumberland as the Case Support Officer working on the Cancer, Older People and Advocacy Project.  I was first interested in the role because my own family have been affected by cancer and I understand how important it is for people who have cancer and their families to be supported during this difficult time.

Susan

I was really pleased when I was offered the job at Age UK Northumberland and  I currently work one day per week at Age UK and my role involves supporting the Project Manager and Project  Team to deliver the Project.  

My background is in teaching, mainly working with people who are least engaged in education and I also work on a Project which helps older people combat loneliness and social isolation.  By working on the Cancer and Older Peoples’ Advocacy Project I can use my background and knowledge to contribute positively in Northumberland.

Susan Chrisp, AgeUK Northumberland

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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.

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.

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

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!

 

 

 

 

 

 

 

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.

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.

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.

 

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

..faced with a cancer diagnosis, feelings of isolation and confusion are only magnified..

Karen Renner, who has recently taken up post as Volunteer Coordinator at programme partner AgeUK Northumberland, gives us an insight into why delivering the Cancer, Older People and Advocacy programme is so important in Northumberland:

I started working as the Volunteer Coordinator on the Macmillan Cancer Advocacy Programme with Age UK Northumberland in September.

I have worked with volunteers in various roles in the past but I am new to advocacy.

I am passionate about the project.  As Macmillan say, ‘no one should face cancer alone’ but sadly, in the case of older people this can be all too true. Over one million older people haven’t spoken to a friend, neighbour or family member for over a month. This is sad enough but faced with a cancer diagnosis, feelings of isolation and confusion are only magnified. That’s where our project comes in and can assist in ensuring that voices are heard, informed decisions taken and quality of life maintained.

 

Even those fortunate to have the support of loved ones can feel lonely.  It is not unusual for older people to keep their concerns to themselves: they don’t want to trouble anyone and they don’t ‘want to be a burden’.  An advocate can bridge this ‘gap’.

Working in Northumberland provides its own unique challenges and rewards.  The county has vast rural areas with pockets of small communities that don’t have the ready access that more urban counties have to services and professionals. Older people are typically traditional, proud individuals who like to go about their daily lives with the minimum of fuss. That’s why the project is so important.  One in three of us will be diagnosed with cancer at some stage of our lives and everyone should have support at that time.

Karen Renner

I am fortunate to be working in a small team of dedicated, enthusiastic people who all feel the same way.  We are working towards the vision of OPAAL: that is, the provision of high quality independent advocacy. Our volunteers will be the key to achieving this.

Karen Renner, Age UK Northumberland/Macmillan Volunteer Coordinator

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.

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.

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.

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.

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

Build, Learn, Share at the Macmillan national Volunteers Conference 2016

Today we hear from Bob and Maddy Smith:

Back in May three volunteers from the Dorset Macmillan Advocacy service at Help and Care were fortunate to be able to attend the Macmillan Volunteer Conference in Hinkley, Leicestershire as volunteer Peer Cancer Advocates. We were really enthusiastic about this although a little apprehensive too. We arrived at the hotel and were immediately made welcome by the friendly hotel staff and the Macmillan welcome team.

Bob and Maddy with friends

After check-in we made our way around the exhibition area which had many stands showing different aspects of the Macmillan organisation and ideas to help us as volunteers. Did you know for instance that there are Macmillan trained Boots No7 beauty advisors who know how to help people with cancer best use their products and feel good about themselves?

Throughout the Friday and Saturday there were sessions in the main conference hall as well as workshops we could attend on topics including Networking, Communication, Getting Your Story into the Media and Managing Stress to name just a few.

There were very interesting speeches from Lynda Thomas (CEO, Macmillan), Joelle Leader (Volunteering Director) and several others.

Lynda Thomas

There were so many interesting facts to learn for example in one year Macmillan:

• Supported 5.8M people affected by cancer
• 590,000 were supported by Macmillan nurses
• £260M was raised to fund Macmillan (£27.5M from coffee mornings alone)

Also we heard that

• Mobile services are provided for hard to reach areas
• Discussions are ongoing with government departments to better support those affected by cancer.

All new information to the both of us.

We managed to speak with both Lynda Thomas and Joelle Leader about Cancer Advocacy. Speaking to them opened up opportunities to raise our profile and present Cancer Advocacy to Macmillan Customer Service Centre staff and those who operate Macmillan mobile service buses in the South of England. We also spoke with many of the delegates to find out about them and tell them what we do. Many were interested including a GP (also a Macmillan volunteer) in Brighton who is now actively promoting Cancer Advocacy. So an excellent conference, lots of learning, networking and a lot of fun too. On the Friday evening there was a gala evening to celebrate what volunteers do with dancing to a live band afterwards.

A theme for the conference was:

BUILD on your existing skills and knowledge

LEARN from other Macmillan volunteers

SHARE your stories and experiences

We certainly did all these as well as recognising and celebrating the value that Macmillan volunteers give back to our communities. It was time very well spent and we would encourage others to apply to go along next year. We came away invigorated and excited with new ideas on how to better promote Cancer Advocacy and ready to help even more people affected by cancer.

Bob and Maddy Smith, Dorset Macmillan Advocacy

(N.B. Dorset Macmillan Advocacy is funded by Macmillan Cancer Support)

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.

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.

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

Cancer Patient Experience Survey – what can advocacy services learn?

The 2015 National Cancer Patient Experience Survey has been published.  It is the fifth time this survey has been undertaken.  The National Results Summary is easy to read and includes illustrative graphics.  A spreadsheet accompanies it that allows you to drill down and see results according to the type of cancer the respondent has and demographic information.  Additional survey reports showing results for each CCG and each local Trust will be published shortly.

Macmillan Cancer Support have responded to the publication and Dr Fran Woodard, Executive Director of Policy and Impact said: ‘The results suggest that there is still a one-size-fits-all approach to cancer care and a lack of personalised support’.

I noted a number of the statistics that I feel demonstrate that there is work for advocacy services to do. It is good to read that 78% of respondents said that they were definitely involved as much as they wanted to be in decisions about their care and treatment.  However only 54% said that, before they started their treatment (s) they were definitely also told about any side effects of the treatment that could affect them in the future rather than straightaway; only 55% said that hospital staff gave them information about how to get financial help or any benefits they might be entitled to; and only 52% said that, during their hospital visit (as an inpatient), they definitely found someone on the hospital staff to talk to about their worries and fears.

What do you think?

Kathleen Gillett, Dorset Macmillan Advocacy

I became a peer advocate because having had cancer, I felt that I could be of help to other people.

Deb McGarrity, delivery partner AgeUK Northumberland’s paid advocate, gives us an insight into what it’s been like delivering the older people’s cancer advocacy service in Northumberland recently. In what is Volunteers Week, Deb also introduces us to Marion, an older person affected by cancer, who has become a peer volunteer advocate:

Since the end of last year the Age UK Northumberland Macmillan Cancer Advocacy and Older People project has steadily been receiving referrals, there have been 24 cases since December 2015.

Without a volunteer coordinator it has been a challenge to keep our volunteers engaged and supported, this has partly been achieved through a good relationship with local Macmillan who opened up their volunteer training schedule to our volunteers. Our volunteers have taken advantage of the Macmillan training by participating in training in Bereavement and Loss, Specialist Palliative Care, Cognitive Behavioural Therapy and Prostate Cancer.

Volunteers have also accompanied the paid advocate on visits and are slowly beginning to have their own cases. One volunteer, Marion Young has started working with a client who recently was given a terminal diagnosis. When I asked  how she feels about being part of the project, Marion responded by saying:

“I became a peer advocate because having had cancer, I felt that I could be of help to other people. I am looking after my first client who has been given a terminal diagnosis. With the guidance of Deborah and the client’s permission I have written letters to the GP and Macmillan to support her with her request to be able to move nearer to her daughter. I am going with her to the hospice. I am meeting with her beforehand to note any questions that she has, giving her empowerment that enables her to understand what will happen.”

Marion Young

From my own point of view it has been great being able to include the volunteers in client case work. Not only are we utilising their experience to help our clients but I too am learning from them which is extending my expertise and informing my practice. I can see too that the clients also really appreciate having someone to support them who has also been affected by cancer.

Deborah McGarrity, AgeUK Northuberland

Why I enjoy my role…

In today’s post, Edna Oni of Barnet Macmillan Advocacy Service tells us about her role:

This is a personal vocation for me and I really enjoy my job as an advocate and as a peer volunteer for the Barnet Macmillan Advocacy service. When I come across a client in difficulties, I cannot help but empathise, and giving them a voice and achieving their goals gives me great satisfaction. I feel my personal experiences makes me acutely aware of what another person is going through and strengthen my passion as a peer advocate for a positive outcome.

I feel I care more as a result of my personal experience. My own father died from lung cancer and my mother in law from breast cancer. Also, my very close friend died almost exactly a year ago.

Whilst the Cancer Older People and Advocacy work often demands a prompt outcome, sometimes it is not possible to help and one of my clients died before I was able to achieve their advocacy goals with them, which was saddening.

Edna Oni

Older people are often overlooked so being able to help in different ways, e.g. with housing, court of protection,  financial abuse is rewarding.  I feel I make a difference by communicating with various organisations on their behalf. The reasons why people contact our Barnet Macmillan Advocacy Service vary enormously and sometimes there are unexpected turns. One advocacy situation with a twist comes to mind involved Mr A, who was referred from social services. He had cancer, had a mini-stroke and was admitted to hospital and then was referred to a care home for 2 weeks’ respite. He really enjoyed the activities in the home and the interactions with other residents so much so that he did not want to go home!

 

At the initial visit with Mr A and his social worker, I informed him that Social Services dictate was for his leaving the home. He refused, telling me he was not going to leave as he had broken up with his partner and there was no one to look after him. His health had improved while he was in the home and the social worker agreed. He felt that if he left his health would deteriorate and he would die. Social services were clearly more interested in funding issues whilst advocacy is completely client centred. I had to press Mr A’s case very strongly emphasising his right to a good life. Social services arranged for him to live in the home on a permanent basis and I thought job done!

Two weeks later I received a call from social service to deal with financial abuse of the same client. His ex-partner had withdrawn over £3000 of his money from his bank account event though a block had been placed on the account. The bank was extremely unhelpful to begin with, but I persevered and eventually they admitted their mistake, refunded the money and paid compensation of £250 for his distress. Mr A was happy and so was I.

Rhonda Oliver

 

 

We’re delighted to welcome Rhonda Oliver to Advocacy in Barnet on May 9th as Project Manager and have our full team complement. Rhonda was previously working with Macmillan and North London Hospice as Project Manager on the Macmillan Specialist Care at Home Project. This project was designed to provide people with life-limiting conditions have more choice about how and where they received their care.