Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Widening the skill mix in Dorset’s cancer care

Macmillan Cancer Support has created a role of Cancer Support Worker and posts are currently being filled at the three Trusts in Dorset.  Deborah-Lynn Wilkinson is helping patients at Royal Bournemouth Hospital with accessing information and support based on an assessment of their needs using the electronic Holistic Needs Assessment (eHNA). If that sounds like a bit of a mouthful then it’s worth noting that Deborah-Lynn is very careful to avoid jargon when speaking with patients.   What the patient experiences is a friendly and informal conversation focused on their wellbeing.

Deborah-Lynn Wilkinson

Deborah-Lynn visited Jo Lee at Help and Care to get an understanding of independent advocacy support from Dorset Macmillan Advocacy and find out what else the organisation can offer locally.  Then Kathleen Gillett visited Deborah-Lynn at the hospital to hear more about the scope of the Support Worker role. Patients can complete the eHNA questionnaire in clinic on a tablet or at home via a web-link and the results form the basis of a care plan.  At present Deborah-Lynn is working on one cancer pathway and will contact patients at three points in their cancer journey to ensure to pick up changing needs.

The Support Worker posts will enable the Clinical Nurse Specialists to use their clinical knowledge and time to best effect and widen the skill mix in the department.  Macmillan Cancer Support’s latest report on workforce From the Frontline includes recommendations to do just this.   We are hopeful that the eHNAs will spotlight where there is a need for advocacy support and that the Support Workers will refer to the advocacy service.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy

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The many benefits of volunteering at any age

Last year Tessa Watts described what she was learning from her first experience as a peer volunteer advocate with Dorset Macmillan Advocacy.   Since then Tessa has supported several more advocacy partners but she has also continued to develop her skills with two other related roles.  Tessa described her studies and her interest in health coaching at interview so when opportunities arose we ensured that Tessa heard about them.  As a result Tessa is now a trained lay facilitator with the Macmillan HOPE course.  HOPE (Helping to Overcome Problems Effectively) is a licensed programme developed by Coventry University and Macmillan Cancer Support to help people who have had/or have cancer to get on with their lives.   More recently Tessa has begun a part time role at Help and Care as a Health Coach with My Health My Way which provides personalised support to people with long term conditions.

Tessa Watts

 

Through her initial link with us Tessa is now involved in three different approaches to self management; independent advocacy, group peer support and one to one coaching. Tessa says, ‘I decided to volunteer with Dorset Macmillan Advocacy because I believe I have the skills to support people during difficult times.  When the coaching opportunity arose it felt like a very natural next step to use these skills so support people with long term health conditions.’

NHS Health Education England has a consultation open at the moment on a new volunteering strategy.  It is aimed at developing the future workforce and focuses on bringing young people into Health and Social care.  I think it’s a great idea and particularly like the emphasis on removing inequalities in volunteering but it did make me think of Tessa and how volunteering has been a way for her to kick-start a new career to which she brings her wealth of accumulated knowledge and experience. Tessa agreed, ‘I had no idea that volunteering would open up a new world for me.  I am enjoying the work immensely and I feel like it does make a difference.’

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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Going underground in Poole

Bob Smith, peer volunteer advocate with Dorset Macmillan Advocacy, can be relied upon to reach the parts that others cannot reach and last week was no exception.  Bob was invited by the Senior Therapy Radiographers to tour the Radiotherapy Department in the basement at Poole Hospital after giving a presentation to the radiotherapy team.  He was shown all the equipment currently in use in the Dorset Cancer Centre and heard about the plans to upgrade the machines and manage a new service at Dorset County Hospital.

During his presentation Bob talked about the role of a peer volunteer cancer advocate, screened the film ‘David’s Story’ and then invited questions.  Staff wanted to know about the capacity of the service, if the service could support family members as well as patients and how many different people a volunteer might be supporting at any one time. They also asked Bob to explain how volunteers maintained boundaries and handled the ending of advocacy partnerships.

Photograph shows Bob with L-R Katharine Spinks and Mandy Sydenham, Senior Therapy Radiographers.

Bob has been leading on the Older People’s Cancer Voices project in Dorset and has made presentations to many different audiences including the Afterglow Support Group for patients completing radiotherapy treatment at Poole.  The result of the additional promotional activity has meant that meant that referrals have increased, especially those from health professionals, and staff are now able to spend more time supporting advocacy partners and volunteer advocates.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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Statutory and voluntary sectors working together in Dorset

Katie Hunter, Dorset Cancer Partnership Cancer Services Coordinator at Dorset Clinical Commissioning Group has a wide remit which includes patient and public involvement.  Katie came to Help and Care at the invitation of Sue Newell, Wessex Voices Project Lead to meet Jo Lee and Kathleen Gillett the coordinators of Dorset Macmillan Advocacy having already met colleagues at Dorset Advocacy.

Katie explained Dorset Cancer Partnership’s plans for improving cancer services in the county and we went on to discuss how volunteer advocates and advocacy partners might be able to share their views.  Katie has already met with the chair of Dorset Macmillan Advocacy’s steering group, Cancer in Older People’s Development Group, and two peer volunteer advocates but will attend a future volunteer team meeting to hear more about why and how people affected by cancer are providing advocacy support and what they get out of it.

Kathleen and Jo suggested that volunteer advocates can often see immediate benefits of the help they are giving whereas taking action to improve cancer services can require a more long term view.  Katie will be able to ask the volunteers how they would like to participate in the newly developed local involvement opportunities.

L-R Katie Hunter, Jo Lee and Sue Newell

 


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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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And now for some good news…

Today, Angela Jones advocate at Age Connects, Cardiff and the Vale provides us with some uplifting news:

It is with great delight that we are able to inform you that from April 2017 – April 2018 we have been funded via Macmillan Wales to continue the Cancer, Older People and Advocacy project and support older people living in Cardiff and the Vale.  Words can’t express how chuffed we are at this good news. 

Angela

The Cancer, Older People and Advocacy project has gone from strength to strength and all professionals and service users who have been involved, have all been very positive about the support we provide to clients, and the benefit and impact this has had on their lives. 

It can be an arduous task setting up a new project, it takes time and dedication, and we are so pleased that we are here for a while longer! We are hopeful to secure further funding beyond April 2018 to continue our vital service to people affected by cancer.

Angela Jones, advocate, Age Connects Cardiff & the Vale


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Recognising volunteers as part of the cancer care team

Research and technological advances mean that new cancer treatments are continually coming on stream. This is good to know given that the number of people living with a cancer diagnosis in the UK is set to double from more than 2 million in 2010 to 4 million by 2030. But what about the people who actually help those affected by cancer, doctors and nurses for example. How is the cancer workforce keeping up with change and preparing for the future?

In February of this year Thinking Differently Macmillan’s vision for the future cancer workforce in England was published. In the Foreword Dr Fran Woodard, Executive Director of Policy and Impact, states: ‘We believe that the workforce needs to be equipped with the capacity, confidence and skills to identify and address holistic needs, to tailor follow-up care and support people to self-manage.’

The current challenges facing the cancer workforce include:

  • rising demand for services and increasing complexity – e.g. people living with multiple long term conditions
  • poor coordination and communication leading to lack of support for recovery

Macmillan calls on Health Education England and the NHS at national, regional and local level to work strategically to ensure people living with cancer experience well-coordinated continuity of care: ‘Our vision is for a workforce that can deliver holistic, patient-centred care and support. It is based on understanding the needs of people living with cancer and the access they need to other services that will contribute to their care.’

The report explains that ‘Delivering truly patient-centred care means ensuring that people are supported before, during and after treatment… Without the right workforce in place, they … may not have the support they need to optimise their quality of life after treatment. They may not always know who to contact for support nor how best to do so. We know they do not always have enough time to talk through all their concerns or be supported with non-clinical issues, such as financial support.’

Macmillan recognises that ‘Volunteers and people affected by cancer, including carers, also have an important part to play in the cancer care team’. My personal view is that highly trained professionals can fail to see the full potential of volunteers.  Peer volunteer advocates are entirely patient or person-centred in their approach as the very nature of advocacy demands that it is led by the service user or advocacy partner as we prefer to call them.   Volunteer advocates specialise in finding things out, sourcing additional support and facilitating ways to access that support. Volunteer advocates have time to listen and to build a trusting relationship.  Volunteer advocates will not offer clinical support but they will help to ensure people can understand information that they are given and feel ready to make informed choices about treatment and care as well as exploring practical and financial support needs.

The report goes on to say ‘Encouraging retention of staff will also be hugely important, as will looking at the potential of retired professionals as volunteers.’ In Dorset we have proven that staff who reach retirement age can be retained in the workforce by the offer of challenging and rewarding volunteer roles such as providing independent advocacy support. Time our Gift to You includes the stories of several former health professionals. Mike Goodman, retired Clinical Nurse Specialist from Dorset Macmillan Advocacy rightly observes: ‘After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire.’

The Macmillan report recommends next steps and advises that ‘Solutions will be unique to each local context and will require the input of a variety of local stakeholders, including Cancer Alliances, Sustainability & Transformation Plans and local NHS providers.’  We are trying to help colleagues in statutory services in Dorset to understand what trained peer volunteer advocates can do and how they are contributing to the skill mix of the cancer care workforce for the benefit of people affected by cancer locally.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy, Help & Care