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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Learning more about independent advocacy in Northumberland

In today’s blog post we hear from Karen Renner, volunteer coordinator at AgeUK Northumberland about a recent advocacy learning and development opportunity for volunteers and staff:

On the 28th February Age UK Northumberland hosted an advocacy training day which was funded as the result of a successful Macmillan Learning and Development Grant application.

The Cancer, Older People and Advocacy Project in Northumberland  was set up by Macmillan Cancer Support and Age UK Northumberland to provide one-to-one support, help and information for people over 50 and their families affected by cancer.  The programme is only available in certain parts of the country and Northumberland is fortunate to be one of these areas.

Val Ford leads the training session

Current and new cancer advocacy volunteers attended the training day as well as Age UK Northumberland staff.  Val Ford, Director of Training from SEAP which is one of the leading UK advocacy agencies delivered the training.  Val who was involved in both writing the original training package for the project and delivering it nationwide to front line Macmillan staff proved an excellent facilitator.

The course provided an understanding and awareness of what Independent Advocacy is and highlighted the principles which underpin good practice in advocacy.  Some of the challenges that can arise with Independent Advocacy were examined and the strategies that could be used to resolve these. 

A number of group activities supported the learning process including several case studies which also examined the various issues faced by older people needing advocacy assistance. 

Discussion over exploring professional boundaries proved of particular interest to both existing and new volunteers.  The dangers of not adhering to boundaries were examined as well as strategies to employ should a boundary be broken.

After a very thorough and engaging day, all those present felt that their knowledge of advocacy had increased.  New volunteers felt they were better equipped with both the knowledge to pursue an advocacy role and the skills to maintain an independent and client led relationship.  Those people already familiar with the project found the day both motivating and a useful reflection on what they had already learnt to date.

Looking to the future, the project in Northumberland continues to gather impetus.  With continued investment in the training of our outstanding volunteer workforce, older people diagnosed with cancer will have the understanding and support needed to make the decisions that will guide them through their journey.

Karen Renner, Volunteer Coordinator


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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

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.  

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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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..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.

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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

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


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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:

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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.

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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

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


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Our first six months…

Deborah McGarrity, Age UK Northumberland’s advocate tells us about a busy first six months in their new Cancer, Older People and Advocacy Project:

Age UK Northumberland has just passed the 6 month milestone; we joined the programme in April this year. As a team we have been actively promoting the project and the excellent service it provides for people affected by cancer. Here are a few of our highlights:

Just last month we joined Macmillan on Beryl the Macmillan bus when she came to Newcastle and Cramlington. This was an excellent opportunity to work with the Macmillan team and also to promote the project, over 300 people visited the bus when it was parked in Northumberland Street, Newcastle.

Beryl, the Macmillan Bus

Beryl, the Macmillan Bus

We have attended numerous ‘Winter Warmer’ events throughout Northumberland, spoken to staff in oncology day units, social services, CAB, U3A, at a GP Conference, Nurse Forums, Carers Northumberland, care homes, hospices, cancer support groups, had a full page article in the local press,  the list goes on. We have recruited and trained some fantastic volunteers.

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Slowly the service is beginning to get known throughout the vast county that is Northumberland and we are trying to be creative in how we promote the service, it can be hard and referrals are slow, but the value of the project keeps us going and enthusiastic! At the moment we are trying to arrange an official ‘launch’ so watch this space..

Deborah McGarrity, Age UK Northumberland


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Northumberland’s good news on volunteer recruitment

Carolyn Reynolds tells us about successful volunteer recruitment in Northumberland:

When we at Age UK Northumberland were planning the launch of our Cancer, Older People and Advocacy project in partnership with Macmillan Cancer Support, we knew we’d be looking for some pretty special volunteers with the skills and experience to help us really deliver.

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We thought carefully about our approach to recruitment for the three very different areas of the very large and diverse area we have to cover.  We’re starting in the North of the county where there’s lots of gorgeous rurality and coastline (and plenty of sheep), but not much in the way of transport links – support services are pretty thinly spread.

Fortunately our local press is very well regarded and popular so it made sense to hatch a plan with one local journalist to interest him in the project. It wasn’t difficult. This is a human interest story touching the lives of a great many local readers, so he was keen to help.

So we put together a feature which brought together the local people who were running the project, some great photographs, a case study which explained exactly why the service is so important, and a story from our Project Manager explaining exactly the sort of people and experiences that would make for a brilliant volunteer team. I made it as easy as possible for the journalist to put together a decent feature without having to do too much extra work or research.

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To our huge delight, we were given a whole page to feature the story in two titles, the Northumberland Gazette and Berwick Advertiser. Both Alnwick and Berwick are community focussed market towns, home to lots of early retired people.  However, competition for good volunteers can be particularly fierce. We didn’t want to poach from other organisations, but we knew there would be other good people out there.

Now for the good news – our plan worked! We were delighted to see a full page of coverage in our target geographical area, and a week later 12 volunteers had come forward. They’re a really diverse bunch but happily each and every one is exactly the sort of volunteer we had hoped to attract. People who’ve had personal experience of cancer and of caring for people with cancer. People who’ve recovered from cancer and who want to give something back. People who really understand some of the difficulties people coping with a cancer diagnosis face.

Gazette photo

Of course, one size won’t fit all when it comes to volunteer recruitment in other areas of Northumberland. I’ve got alternative plans to attract volunteers in the very different demographic of the urban south of the county which is one of the UK’s most deprived ex-industrial areas and in the rural west – farming communities and commuter belt villages.

But for now, we have friendly journalists on board who are delighted to continue to report on our progress in at least one of our target areas. Result!

Carolyn Reynolds, Volunteer Co-ordinator, Age UK/Macmillan Cancer, Older People and Advocacy Project


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The Garden Party

Earlier this year OPAAL received an invitation from Patron, Her Grace The Duchess of Northumberland, to send a representative to attend a Summer Garden Party in the Alnwick Garden. Her Grace held the Garden Party in her capacity as Lord Lieutenant of Northumberland.

Since AgeUK Northumberland is one of our newest delivery partners in the Cancer, Older People and Advocacy programme, we passed the invitation along.  The following is their account of the day:

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Angela McKillop, one of our advocates for older people in Northumberland, was among 250 volunteers who recently attended the  Duchess of Northumberland’s  prestigious annual summer garden party.

Angela was lucky enough to be drawn to represent the volunteers who give their time freely to support the advocacy service at Age UK Northumberland. Angela had a wonderful day despite the rather chilly weather.

Angela McKillop

Angela McKillop

 

 ‘The Duchess a circulated among the guests, made a lovely speech and presented some awards towards the end of the afternoon.  I spent some time promoting the advocacy service to some WI ladies and carers from Cornhill, in the very north of the county, and made arrangements to go to their next meeting.  There were some lovely outfits and some delightful hats, but lots of us were grateful for our pashminas and jackets.”

The Grand Cascade at Alnwick Garden

The Grand Cascade at Alnwick Garden

 

 

 

 

The Duchess hosted the event at the Alnwick Garden, and was generous in her compliments to those who commit to a regular volunteering role: “There are so many extremely generous and extraordinary individuals in Northumberland who give up their time selflessly, to help others in need. This is our way of saying ‘thank you’ to them for the really valuable work they do.”

The Duchess of Northumberland

The Duchess of Northumberland

 

 

The Duchess as Patron of OPAAL previously said “I am absolutely delighted that the Cancer, Older People and Advocacy programme is coming to Northumberland. Older people affected by cancer can have such a rotten time so giving other older people with their own experience of cancer the opportunity to come forward to be trained as advocates to support them in their local community is wonderful.”

 

 

 

Carolyn Reynolds, Volunteer Coordinator, AgeUK Northumberland


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Fantastic news! Our numbers are increasing again…

Age UK Northumberland (AUKN) is delighted to announce that they will be joining the Cancer, Older People and Advocacy  programme after successfully securing funding from Macmillan Cancer Support to deliver a dedicated advocacy service for older people affected by cancer throughout Northumberland for three years.

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Her Grace the Duchess of Northumberland is Patron of OPAAL and said “I am absolutely delighted that the Cancer, Older People and Advocacy programme is coming to Northumberland. Older people affected by cancer can have such a rotten time so giving other older people with their own experience of cancer the opportunity to come forward to be trained as advocates to support them in their local community is wonderful.”

The Duchess of Northumberland. Photograph by Margaret Whittaker

The Duchess of Northumberland. Photograph by Margaret Whittaker

AUKN is an established health and social care based charity across the county of Northumberland and its services include befriending, advocacy, practical support, information advice and guidance, welfare benefits (case work including representation at tribunal) and housing & social care options casework/advice/assessments, health & wellbeing exercise programmes for older people. AUKN has been a trusted source of advocacy in Northumberland for the last 7 years offering general advocacy and specialist advocacy support to older people encountering financial abuse, scams and housing & social care options. Advocacy is a vital service supporting older people who find it difficult to voice their wishes and those who are denied or are unable to access treatment, services, benefits and support.

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Data from Northumberland’s Health and Wellbeing Board Cancer Profile (Northern and Yorkshire Cancer Registry and Information Service (NYCRIS)) reveals that almost 1900 people in Northumberland are diagnosed with cancer each year and over 900 die of the disease, accounting for 28% of all deaths. Northumberland is ranked as the 29th most deprived local authority in England and there is a link to social deprivation and significantly worse outcomes for survival and life expectancy. This is perhaps linked to lack of awareness of cancer signs and symptoms within poorer communities and restricted access to health services which may be magnified in areas of rurality such as Northumberland.

This project will fill a gap in specialist Advocacy services across Northumberland, addressing inequalities that vulnerable older people (aged 50+) affected by cancer face both with cancer treatment options and in access to healthcare and support services. The advocate will support the older person throughout their cancer journey, helping them to obtain all of the information and support that they need.

Deb McGarrity of AgeUK Northumberland in front of the Round House, AUKN's headquarters

Deb McGarrity of AgeUK Northumberland in front of the Round House, AUKN’s headquarters

AUKN is currently recruiting volunteers for this exciting new service and will hope to be rolling out the service soon. Please visit AUKN’s website for further information and updates: www.ageuk.org.uk/northumberland

 

Deborah McGarrity, Advocate Coordinator, Age UK Northumberland.