Older People Living with Cancer

Peer advocates supporting older people affected by cancer

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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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Face to face support has the most impact

What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:

There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.

Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics.  In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.

Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more.  She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact.  She believes that the best services and support need to be local and need to understand the needs of the local population.

The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.

2 Kaths for the price of one - Kath Curley & Kathleen Gillett

Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy

Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’  This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.

The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to;  and 24% respond HNA.

I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be.  Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey.  At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy

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It’s Carers Week

Whilst it’s still Volunteers Week it’s also Carers Week from 6th to 12th June. Kath Curley of programme partner Beth Johnson Foundation looks at at the statistics around the service the Staffordshire and Wolverhampton Cancer Advocacy and Support Project provides.

Since the start of the Project there have been 432 referrals into the advocacy and support service,  with 95 (22%)  being for carers. Of these 29 (30.5%) are male and 66 ( 69.5%) female – a ratio of   more than 2:1 of female to male. Currently there are 11 open cases for carers across Staffordshire and Wolverhampton.   Looking at the 84 closed cases throws up some interesting statistics.

The majority of referrals were “self-referrals”  – 36% followed by referrals from the Macmillan Cancer Information and Support Centres in Stoke, Stafford, Burton and Wolverhampton which were 22 around 23%. Referrals to the Advocacy Service for clients with cancer resulted in 8 referrals for their carers and friends and family of cancer patients led to a further 7 referrals. Macmillan nationally (helpline) have only referred 1 carer to the Project.


84 cases have been closed over the period of the Project of which 39 were closed as the “course of action was completed” which is 46%.  Unfortunately only 6 were closed because they felt empowered to act for themselves, make decisions or had regained control. One carer was too ill and there was no engagement with 9. Other reasons were moving out of area, no longer needing the service, bereavement and refusing the service.

Of the 95 cases, the majority live in North Staffordshire (including Stoke on Trent), this is not surprising as the Project was started as a pilot in this area back in 2012. Wolverhampton has only had 5 referrals but this was the last area to come on board as part of the Project in February 2015.


The project is for older people (50+) affected by cancer so if you are a carer of someone with a cancer diagnosis, live in Staffordshire or Wolverhampton and are struggling then please get in touch with us. A phone call to Beth Johnson Foundation on 01782 844036 is all you need to do.



Kath Curley, Project Manager


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New Macmillan project in North Staffordshire

In this post Kath Curley from programme partner Beth Johnson Foundation introduces us to new work going on in her local area:

I am pleased to be able to write about a new Macmillan funded project that is taking place in Staffordshire.

The Project is led by a familiar face to the Staffs and Wolves Cancer Advocacy and Support Project – Jo Coulson –  and Angie Bunn has taken up the role of Engagement Officer.


Cancer support services are perceived to be patchy or even inaccessible when the person affected by cancer is also Lesbian, Gay, Bi-sexual and Transgender (LGBT). There is a lack of solid evidence in relation to this area of need and an absence of information regarding effective approaches to service provision. With a view to improving this situation this project seeks to redress this by speaking directly to people from these groups and undertaking an in-depth assessment of current service “fit”. Recommendations will be made for service redesign based on the experiences recorded across Staffordshire, including Stoke on Trent. It is expected that the recommendations made will influence services nationally and may form the basis of a much broader review of services.


Jo Coulson

Scoping aims are to find out:

  • What are LGBT people’s experiences of cancer treatment and support locally?
  • What factors facilitate/inhibit open discussions between clinicians and LGBT patients?
  • How well educated are local health professionals about LGBT issues (both clinical and personal – do doctors make assumptions)?
  • What are awareness levels within LGBT communities about specific cancer risks, screening programmes, etc?
  • Is there a need for specialised LGBT code of practice, cancer information and literature, etc?
  • Can true ‘patient centred care’ disregard sexuality or gender variance?

It will use the following strategies:

  • Face-to-face meetings & capturing stories
  • Surveys and questionnaires
  • Focus groups, workshops, roadshows
  • Internet and social media
  • Workplace engagement with clinical staff
  • Information gathering and capturing experiences, identifying trends and gaps
  • User involvement in project development                                                                                                                                                                                                                                                                                  

 We wish Jo and Angie all the best with this Project and look forward to the outcomes. I will try to keep you all up-to-date as the Project progresses.

Kath Curley, Staffs & Wolves Cancer Advocacy Project Manager

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What a coincidence!

Our colleagues and programme partners Staffs & Wolves Cancer Advocacy project have just published the post below on their own blog and Kath Curley project manager has kindly agreed to share it with us:

At last week’s Cancer Older People and Advocacy Programme Project Management Group Meeting Kathleen Gillett, from Dorset Macmillan Advocacy,  gave a presentation on Macmillan’s Recovery Package.

Recovery Package DiagramThe Recovery Package is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

The Recovery Package is made up of the following elements:

  • Holistic Needs Assessment (HNA) and care planning.
  • Treatment Summary completed at the end of each acute treatment phase 
  • Cancer Care Review completed by the GP or practice nurse to discuss the person’s needs.
  • An education and support event such as Health and Well-being Clinics.

Today, Collette Cooper and I met with Sarah Gorton, Macmillan Cancer Survivorship Project Manager, based at Royal Stoke Hospital, who has taken up a 2 year Macmillan funded project. Sarah is working with the CNSs, across Royal Stoke and County Hospitals, for 4 cancer sites:

  1. Head and Neck
  2. Brain
  3. Primary Bone
  4. Gynaecological  

to implement an electronic Holistic Needs Assessment (eHNA) within these clinics as an integral part of the Recovery Package.

We discussed with Sarah where advocacy fits within the Package and that Advocates compliment and support the work the CNSs are doing. We hope this will lead to greater partnership and collaborative working with the health professionals.

Good luck Sarah!

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

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Our World’s Biggest Coffee Morning

September 26th marked the biggest annual fundraising event that Macmillan Cancer Support hold – their World’s Biggest Coffee Morning.  You’re bound to have seen adverts and invitations over the past few weeks as it felt like most of the country took part; schools, churches, supermarkets – on a scale that could even top the whopping £20 million that was raised in 2013.


Ever the rule-breakers, we at the Staffordshire Cancer Advocacy and Support Project, held ours on the day before – Thursday 25th September. This made more sense to us as more of us were free that day and even better, some of us were then able to attend two coffee mornings!


We were joined by Hands4Wellbeing (http://hands4wellbeing.co.uk/) who offered relaxing mini massages to our guests and talked about some of the ways their complementary therapies could be used to help people affected by cancer.


Delicious homemade cakes included:  an orange polenta cake, a chocolate and courgette cake and a beautiful chocolate and raspberry roulade with only two syns!  Plus muffins and cupcakes and some lovely gooey chocolate squares, donated by OPAAL’s Kath Parson.


Macmillan have yet to reveal  this year’s total but we’re delighted to have raised £177 through our cakes, games and donations – not bad for a morning’s work!

Did you take part in a Macmillan Coffee Morning this year? Tell us about it in the comments!

Joanne Coulson, Staffordshire Cancer Advocacy Caseload Officer


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Central Staffs Launch 23rd July 2014

23rd July saw us at Rising Brook Baptist Church in Stafford for the launch of our project in Central Staffordshire. We were joined by guests from across the sector, including VAST, Disability Solutions and  Katharine House Hospice,  along with our own colleagues from the Beth Johnson Foundation.


Project Lead Kath Curley delivered a presentation outlining the history of the project so far.  Following a successful pilot project in Stoke on Trent and North Staffs, we now work in partnership with Macmillan Cancer Support, who are supporting and funding our expansion over the coming three years.


Kath Curley

Kath used visual imagery including a snakes and ladders board to illustrate the highs and lows over the project’s journey. A jigsaw diagram showed how the four elements of the project – OPAAL, the Pilot Site, Macmillan and the Big Lottery – came together

3 4








Kath was followed by Anna Lynall from Macmillan Cancer Support, who talked the audience through some sobering statistics about cancer and older people that really demonstrated the need for this valuable project.


Anna Lynall

Our Volunteer Coordinator for Central Staffordshire is Amanda Carter, who joined us in May and is brimming with enthusiasm. Unfortunately, Amanda’s recruitment coincided with an unfortunate accident in which she broke her arm. This was something of a setback as we waited for her recovery and doctor’s permission to drive again. Luckily for us, she’s a trooper and has now healed well and is raring to go. Amanda is looking to recruit Volunteer Advocates in Stafford and the surrounds, aged 50+ with some experience of cancer related issues. If you would like to learn more, you can reach her at amanda.carter@bjf.org.uk


Amanda Carter

If you would like to make a referral to the project, you can email macmillan@bjf.org.uk or call our office on 01782 844036. We accept referrals from medical staff and professionals as well as carers and relatives, or even self-referrals. If there is a need for an advocate to help someone navigate the difficult life issues that a cancer diagnosis brings about, we’re here to help.


Kath Curley, Project Lead, Staffordshire Cancer Advocacy


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Staffordshire Cancer Advocacy project is launched!

BETH LOGO small document

This is my first week in the full-time post as Project Lead for the Staffordshire (Macmillan) Cancer Peer Advocacy and Support Project as reported in my blog of 16th December. We have recently publicised the project locally and were fortunate enough to have one of our clients, David, talk to the press and participate in local radio interviews. The links are below:




We have appointed our first 2 Volunteer Co-ordinators, one for Staffordshire (North) covering Stoke on Trent, Newcastle Borough and Staffordshire Moorlands District and one for Staffordshire (Central) covering Stone, Stafford and Uttoxeter Districts. One of their first tasks will be to recruit more Volunteers.


This initiative for people of Staffordshire is thanks to Macmillan Cancer Support and OPAAL and I will keep you all informed with developments and progress. Hopefully more advocacy projects will be able to provide this specialised, much needed service for older people.

Kath Curley

Staffordshire Cancer Advocacy Project Lead

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Welfare Benefits Advice Service for cancer patients officially launches in Staffordshire

Last week Macmillan Cancer Support at Disability Solutions celebrated the official launch of their Welfare Benefits Advice Service in Staffordshire. The service offers free, confidential advice to people living with cancer, their carers and family on issues such as welfare benefit entitlements and all aspects of independent living to ease some of the additional pressures a cancer diagnosis brings.

The Service was established in July 2012 and since then the Macmillan Advice Workers have achieved gains of £1.4 million in benefits and additional income for over 700 people in Staffordshire affected by cancer. The service recently moved premises to the North Staffordshire Medical Institute and on the 23rd May volunteers, local GPs, the Lord Mayor of Stoke on Trent, medical professionals, charity organisations and councillors came together to celebrate the launch and find out more about what the service can offer.

There were speeches by representatives from Macmillan, Disability Solutions and Dorinda Palmer, Macmillan Lead Cancer Nurse at UHNS, followed by workshops to help dispel some of the myths around welfare benefits and to introduce the concept of Personal Health Budgets. The aim of the day was for people to understand the role of Disability Solutions, gain more information about the welfare benefits system and to understand some of the financial issues facing people affected by cancer.

Marika Hills, Macmillan Development Manager, said: ‘The launch of the service was a huge success, the feedback from attendees was that they all felt the aims of the launch were met and many congratulated us on an informative and interesting event. We are thrilled at how successful the partnership with Disability Solutions has been so far, they are making an enormous impact on the lives of local people living with cancer.’

Rodger Read, Chief Executive at Disability Solutions, said ‘We would like to thank everyone who attended the launch and all those who have helped us achieve so much. Disability Solutions have had links with Macmillan and UHNS, providing welfare benefit advice to those affected by cancer, for the past eight years. Demand for this service grew to a point where we could no longer cope and a bid was successfully submitted to Macmillan for a properly funded contract to cover the whole county. In Staffordshire there are high levels of deprivation and people affected by cancer so this service is vital and we look forward to celebrating its continued success.’

If you or your family live in or are currently receiving treatment in Staffordshire, and are struggling to cope with the impact of cancer you can access the Service by calling 01782 667321 to arrange a face to face appointment or for advice over the phone.

Cancer is the toughest fight that many of us will ever have to fight, but you do not have to do it alone. The Macmillan team is with you every step of the way. For more information about cancer, practical and emotional support, and to find out about local fundraising opportunities, call the Macmillan Support Line free on 0808 808 00 00 or visit www.macmillan.org.uk.

Kath Curley