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.

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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.

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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.

Remember:

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Kath Curley, 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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Amplifying Older People’s Cancer Voices through film

Do you want to see our Cancer, Older People and Advocacy (COPA) programme brought to life in film? Then stay with us all this week to find out more!

Our Older People’s Cancer Voices project is funded by Department of Health to September 2017. This project is about amplifying older people’s cancer voices into a wide range of settings to bring to life the effectiveness of independent advocacy support for older people affected by cancer.

Margaret and Vivian

Margaret and Vivian

A key output of the project is a set of films featuring older people affected by cancer, together with their volunteer peer advocates, and health and care professionals and commissioners, talking about the difference advocacy makes.

Working with Cancer, Older People and Advocacy project partners Beth Johnson Foundation, I-CANN, Help and Care and Dorset Advocacy we are delighted to see the release of our year one films.

Throughout spring and summer 2015 these project partners worked alongside OPAAL and our filmmaker Meirion Harries of Webenable to bring together older people affected by cancer who wanted to use their knowledge and experience to develop better services for their peers. In addition to securing a fantastic team of volunteers and advocacy partners who were willing to go in front of the camera our project partners themselves participated. They were able to secure a wide range of health and care professionals and commissioners whose experiences will support and encourage their own professional peers to see the value of advocacy for older people affected by cancer.

As project partner Janet Cullingford from I-CANN reflected in a recent blog post:

 Everyone who took part commented on how much they had enjoyed being a part of it, and were made to feel at ease by both the interviewer and Meirion. It also provided fascinating insights into the way that films are edited, cuts used, even the importance of lighting.

OPAAL’s Ang Broadbridge reflected on her experience of the filming process:Web

This series of films forms part of a package of capacity building support that cancer, older people and advocacy project partners can use to promote and develop their services. Each film has a call to action; for example to encourage new volunteers, to support health and care professionals to make referrals, and we are excited about showcasing these films and getting these key messages heard. I’m hugely grateful to the project partners and participants for their support in making these films a reality, I want to say a big thank you for all your support!

Thanks also to Meirion who has captured so well the experiences of older people affected by cancer, the motivation, commitment and passion of our volunteer peer advocates, and the understanding of advocacy that the professionals we work alongside have developed. Meirion’s own understanding of advocacy and sensitive approach to storytelling has helped us to really capture and amplify the voices of older people affected by cancer.

We’ll be releasing a film each day this week on the blog, starting with an introduction to the Cancer, Older People and Advocacy programme tomorrow, make sure you visit us again to be the first to see it.

Ang Broadbridge, OPAAL


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Mindfulness Awareness

The Staffordshire and Wolverhampton Cancer Advocacy and Support Project provided by the Beth Johnson Foundation applied for a Macmillan Team Learning and Development Grant which was successful and enabled us to participate in an Introduction to Mindfulness.

Mindfulness is an ancient Buddhist practice which is very relevant for life today. Mindfulness is a very simple concept.  Mindfulness  means paying attention in a particular way:  on purpose, in the present moment, and non-judgementally.  This increases awareness, clarity and acceptance of our present-moment reality.

Mindfulness does not conflict with any beliefs or tradition, religious, cultural or scientific.  It is simply a practical way to notice thoughts, physical sensations, sights, sounds, smells – anything we might not normally notice.  The actual skills might be simple, but because it is so different to how our minds normally behave, it takes a lot of practice.

The following are reflections on the 2 days by some of the Volunteer Co-ordinators……..

“On 14th and 15th July I joined the rest of the Beth Johnson Foundation staff at Acton Trussell to find out about Mindfulness. The session was led by Miro Cansky who gave us  an interesting introduction to the technique.

Mindfulness has been used for many years by different groups in a variety of settings and it has gained in popularity more recently.

The art of ‘living in the moment’ is a great skill to have when living or working in stressful situations with people who are experiencing major difficulties in their lives. Although this was just a taster session, I hope that it will be a useful tool both personally and when supporting people affected by cancer.
It was also nice to spend time with work colleagues away from the office and I found this to be a great team building experience; lying on the floor and deep breathing is a great way to get to know your fellow workers!

Thank you to Macmillan for the funding and to Miro for giving us an insight into the practice and advantages of this interesting technique.” Hilary Stefanelli, East Staffordshire Area Co-ordinator

Relaxation

Mindfulness – Collette’s view

I wasn’t sure what to expect; the concept of Mindfulness seemed to be a ‘hippy’ style activity.  However, with an open-mind and overnight bag, I joined my colleagues from Staffordshire and Wolverhampton Cancer Advocacy and Support Project and staff from the Beth Johnson Foundation at The Moat House, Acton Trussell for a 2-day Introduction to Mindfulness Workshop.

I hoped that my outcome of the workshop would be to discover a way to de-stress and relax as the vast majority of my time is spent with clients in emotional distress.

Theory

 

My outcome was achieved and exceeded!  To sit quietly focusing on the ‘here and now’, using my senses of touch, sight and sound and, allowing myself the time, without the guilt, out of a busy schedule.

Looking forward, I intend to put into practice what has been learnt as the workshop was only an introduction to the process of being Mindful and that further learning is to be had through practice.

Collette Cooper, North Staffordshire Area Volunteer Co-ordinator

 

Living in the moment – it sounds like a simple enough task but it was not until my involvement with the ‘Mindfulness’ taster sessions that we were able to take part in last week that I realised just how hard it is for me to really clear my mind and focus on simply  ‘being’. It really is a whole new mindset.

So, following on from our training last week, I have tried to make it a point of sitting and practicing the simple ‘FOFBOC’ (feet on floor, bottom on chair) meditation technique that we learned, just for a few minutes, at least once a day. The idea is, that by sitting comfortably and purposely paying attention to things as they are at that present time, it will become second nature for me to regularly re-centre my thoughts and help me to become more aware of my feelings and body sensations.

It is thought that practising mindfulness can give more insight into emotions, boost attention and concentration. Sounds good to me! So I thought I should at least give it a go. Watch this space… Amanda Carter, Central Staffordshire Area Volunteer Co-ordinator


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Welcome to our Volunteer Co-ordinator for Wolverhampton

Hi

My name is Pam and I am the newly appointed Volunteer Coordinator for Wolverhampton for this project run by Beth Johnson Foundation. I have been looking for a challenging role and now I think I have found it!  I have worked with Wolverhampton Council for 23 years in Health and Social Care at various levels from Home Help to Management.

Pam

Pam

 

I feel I can bring all the experience and skills I have gained by providing local services to elderly people, their carers and families, people with learning disabilities and other disabilities, and training care staff at different levels, to this role and therefore support older people to face cancer and live a life they deserve!

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For more information about the Wolverhampton project please contact  pam.bhogal@bjf.org.uk

Pam Bhogal, Staffs & Wolves Cancer Advocacy and Support Project


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ICANN Flagship Event – Cancer and Older people

ICANN held a Flagship Event around Cancer and Older People, in conjunction with our AGM on the 1st October 2014, at St Cuthbert’s Church Hall, Fulwood, Preston.

The event was to promote our new Cancer Older People & Advocacy project. Invited guests included volunteers, cancer champions, service users and representatives from other local organisations.

ICANN AGM with  Denise Partington CEO of ICANN, with Kevin Wright, Chair of Trustees

ICANN AGM with Denise Partington CEO of ICANN, with Kevin Wright, Chair of Trustees

Our two guest speakers were Kath Curley from Beth Johnson Foundation and Paolo Dey from the Department of Health at the University of Central Lancashire. Kath talked about experiences and learning from being a Cancer, Older People and Advocacy pilot project partner, and how with the support of Macmillan Cancer Support, Beth Johnson Foundation had successfully extended the service to cover the county of Staffordshire. Paolo has a specialist interest in epidemiology relating to health inequalities and informed us about local statistics in relation to older people with cancer, and how this compared to national statistics along with those for other age groups.

Kath Curley

Kath Curley

Local organisations including Age Concern, Alzheimers Society, Healthwatch, Help Direct, and Connect 4 Life, joined with Rosemere Cancer Information Centre, Vine House, our local Clinical Commissioning Groups  and UCLAN in hosting display stands to raise awareness of their services. This provided lots of great networking opportunities for all participants and am sure will enable us to work better together in the future.

We concluded with a luscious cream tea, which was enjoyed by all our guests.

ICANN staff enjoying the cakes!

ICANN staff enjoying the cakes!

 

Janet Cullingford, Services Manager, ICANN    


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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.

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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.

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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

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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.

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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

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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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OPAAL to receive share of £4 MILLION to support proposals in the Health and Care field

OPAAL is to get funding to develop new, innovative approaches to health and care, actively share excellent practice or improve integrated care and efficiency.

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Voluntary sector organisations submitted funding bids to the Department of Health setting out how they could help meet the Departments objectives of better health and well-being and better care for all and how their proposal has potential for national impact.

Minister for Care and Support Norman Lamb said: “These projects play a crucial role in supporting people, their families and carers. They are examples of just some of the excellent and innovative work going on throughout the country in the voluntary, community and social enterprise sector – all of which help to create and support strong and resilient communities.”

Norman Lamb MP

Minister for Care and Support, Norman Lamb

The Department of Health funding comes from the Innovation, Excellence and Strategic Development Fund (IESD) and will cover the cost of a Development Officer post for 4 days a week for 3 years. The Development Officer will work on a  new OPAAL project called Older People’s Cancer Voices alongside the Flagship Cancer, Older People and Advocacy Project and will build relationships between Clinical Commissioning Groups and independent advocacy organisations. Initially the project will work with pilot partners Beth Johnson Foundation, Dorset Advocacy, Help & Care and Sefton Pensioners’ Advocacy Centre to create a library of filmed case studies. These real life stories will, like our recent publication Every Step of the Way, aid the buy-in to advocacy and support Commissioners, Health & Wellbeing Boards and Healthwatch to get a better understanding of the impact that advocacy can have.

We aim to produce best practice guidance for use by providers of advocacy services to older people to help them build relationships with Commissioners. Eventually this guidance will be made available across the whole of the advocacy sector. This guidance should ultimately lead to greater opportunities for older people to influence service delivery through Health & Wellbeing Boards and Healthwatch, promoting equality of opportunity along treatment pathways.

Kath Parson

Kath Parson

Kath Parson, OPAAL’s Chief Executive, said ” We are absolutely delighted with this award, this money will help us bring the voices of older people directly to the attention of local decision makers. We aim to support older people to make films of their stories to be used to educate and inform local decision making ensuring that independent advocacy becomes a key component of age friendly care using evidence we will gather as shining examples”.

We are currently recruiting for a new Development Officer and hope to see the project get underway in the Autumn. If you are keen to work with us on this exciting project you can download the application pack from the home page of the OPAAL website by clicking here. The closing date for applications is Tuesday August 12th and interviews will take place in Stoke on Trent on Wednesday 10th September.

Marie McWilliams, National Development Officer, OPAAL