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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Trick or Treat?

Today Rhonda Oliver of Advocacy in Barnet provides us with food for thought:

Halloween is looming – rooted in the ancient Celtic festival of Samhain, it marks the end of Summer and the harvest, and the beginning of the cold dark winter associated with human death, when the boundary between the living and the dead becomes blurred.

According to the Office of National Statistics more people die in winter than in summer and the Grim Reaper pays most house calls in December, January and February. So, if you do not want to think about death and dying, look away now!

Is there a right time to have an advance care plan? Who should have one? What should it cover?

A care plan is for anyone, with increasing relevance for older people who are likely to be nearing the end of their lives. However, it could be for someone who has particular health needs or someone who just wants to record their choices and preferences for their care and treatment for any other reason.

It is a good idea not to leave this until a crisis happens when you may not be able to participate in making choices. In an emergency health professional may have to make rapid decisions about your treatment and a care plan can help to ensure that you get the treatment that is best for you and that you would have wanted.

A care plan is created through conversations with your family and carers, your health professionals and you. You keep the plan with you and ensure that it will be available immediately in an emergency, say to ambulance crews, out-of-hours doctors, accident & emergency and other hospital staff if you are admitted. Some people keep their care plan displayed on their fridge door; others leave it inside the fridge in a plastic bag! This is often the first place an ambulance crew will look.

The plan will guide clinicians to balance the priorities for your care, i.e. would you want them to focus on treatment to prolong life or to focus mainly on providing comfort? The plan should include your choices regarding  treatments that you would want to be considered for or those you would not want, for example would you want cardiopulmonary resuscitation (CPR)? If the answer to this is no then you should flag an advance decision to refuse treatment (DNR) or any other important planning documents in the plan. It is very important that your understand the parameters and implications of an advance decision to refuse treatment and that you discuss this with your GP and family.

Talk to your local advocacy organisation if you are thinking about your future care. It will support you to make your choices and preferences heard.

Once you care plan is made it is not set in stone and should be reviewed on a regular basis. It should, however, provide you with peace of mind so you can cuddle up on the sofa with your loved ones, with a cup of tea (or something stronger), watch the telly and wait for spring.

 

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy & Advocacy in Barnet


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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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United Nations International Day of Older Persons 2017

We didn’t want this year’s UN International Day of Older Persons to go unnoticed. The theme is “enabling and expanding the contributions of older people in their families, communities and societies at large. It focuses on the pathways that support full and effective participation in old age, in accordance with old persons’ basic rights, needs and preferences.”

It struck us here at OPAAL that this is exactly what advocacy is all about. Our members up and down the country are empowering older people on a daily basis, enabling them to contribute and to be heard. What’s additionally impressive is that many of our member organisations are led by older people and also utilise the skills and experience of older people to support their peers.

Photo by Nathan Anderson on Unsplash

Older people have so much to contribute. In our Cancer, Older People and Advocacy programme, working with Macmillan Cancer Support and EY (formerly Ernst & Young), we have been able to show that in complex cases where the older person had three or more issues, the social, economic and financial return for the every £1 invested in advocacy was £6.70.  That’s older people being effective in supporting their peers. In doing so they’re contributing to the economy not draining it as is the image so often portrayed. They’re also empowering their own communities, reducing isolation and giving hope when sometimes there is none.

So, let’s all look at older people appreciatively. Every individual no matter how old has something to offer.

Let’s celebrate older people not just on their special day, but every day.

Marie McWilliams, OPAAL


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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