Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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


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Lightening the transport burden: how Advocacy in Barnet helped older people with cancer to attend their chemotherapy appointments

Today Rhonda Oliver of Advocacy in Barnet highlights some of the difficulties faced by those attending chemotherapy appointments:

As many older people affected by cancer will tell you, getting to and from their chemotherapy appointments can be a nightmare.

Public transport in the UK is dirty and overcrowded and people worry about picking up illnesses when their immune system is suppressed by chemotherapy. Journeys to and from Central London from the London Borough of Barnet may involve multiple bus and tube journeys. For older people affected by cancer the prospect of such journeys when they are feeling exhausted and unwell is very dispiriting and when they finally get home they are too tired to prepare a meal and eat it.

My daughter’s main hospital is in London and parking is nigh on impossible. We are unable to use public transport owing to her condition. She has an inoperable brain tumour which causes her to have frequent seizures, making it very unsafe to use the London Underground”.

If patients are eligible for the ambulance service there is usually a long delay while the ambulance winds its way around Barnet. One of our clients said:

We do qualify for hospital transport, but this frequently entails a 2 hour wait for our journey home and this is extremely tiring and stressful, especially as the journey itself usually takes an hour or so – depending on the traffic – and whether or not there are any other pick-ups/drop offs en route”.

Many patients feel too unwell to drive themselves and may have to rely on friends and family to drive them to their appointments. Parking is often difficult to find and the parking fees may be prohibitively expensive. There is also the stress of worrying about an appointment over-running time, with the prospect of a parking fine to add to the misery.

So how was Advocacy in Barnet able to help to reduce the burden of transport on these patients? It did so as the result of an extremely generous grant from Barnet CancerLink, a local non-medical Barnet charity. This grant enabled us to work with two local taxi companies to provide a free taxi service for patients to and from chemotherapy and related cancer medical appointments. The grant also enabled us to provide a cooked meal on request when people were too exhausted to cook after their appointments.

We were able to help 100 people affected by 22 different types of cancer: 53 females aged 25-84 and 47 males aged 51-82. Some people had multiple return journeys.

Being able to book a cab, which will turn up to collect us in a very reasonable time and which is just for ourselves, makes a huge difference to our day. My daughter is much more relaxed which has a direct effect on the number of seizures she has”.

This last week alone, my husband went back and forth to Barnet General on Monday, Tuesday, Wednesday and Thursday. The total cost to him was £72. The outlay since August last year would have exceeded £2000 had it not been for Advocacy in Barnet and some wonderful neighbours”.

The grant took effect from December 2016 until June 2017, when the grant was exhausted. We are very grateful to CancerLink Barnet for enabling us to demonstrate that people living with cancer are in desperate need of help with their transport needs and to show its impact on cancer patients in Barnet.

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy.


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What Price Advocacy?

Today our thanks go to Jan Dyer of Dorset Macmillan Advocacy for taking the time to share her peer advocate’s point of view:

Cancer advocacy makes a difference now, and could make so much more. Advocacy saves the NHS money and provides better quality care, it makes cancer journeys better and easier to undertake.

Yes, you’re right, it’s very difficult to prove, it can’t be easily quantified. I could give you plenty of examples, but in pounds and pence, no. But I can tell you, that over the last three years, working as a Macmillan Peer Volunteer Advocate, I have seen it for myself. Let me share some of my experiences and pose some questions……

The patients, friends and families I meet don’t always have the tools to hold their home teams together and support their structure, they are floundering in unknown territory, with no experience to draw on.

There is a presumption that every relationship is in a good place at diagnosis, and that would be great but it isn’t the reality. Some rally and rise to the challenge, but some carry baggage on this trip, which can complicate the decision process and can make the going even harder.

Realistically, how much time do our overworked medical teams have to talk to patients and support team? For some, nowhere near enough.

If communication becomes difficult between home and medical teams, who steps in, pursues and explores possible solutions to get things moving forward again? How much easier is it to deal with patients if they come prepared for appointments because they’ve had time to discuss their worries, fear, frustrations and options in an objective environment first? Sometimes patients just want to walk away from appointments having asked all the questions they wanted to, with no ‘I wished I’d asked’’ moments later, with all the confusion and frustration that brings. Let’s face it, if it’s all new, how do you know what you don’t know?

Jan

Then there are the carers who, however well meaning, may not be not equipped for the very new situation in their life. Who want to do their very best, but don’t know how to or have time to find what they need. Who supports them? Anybody can struggle when practical problems come along, meeting unfamiliar challenges in an uncharted world.

Who will have time to discuss and help them make an end of life plan? When all around you, fearing a bad outcome are urging ‘Just be positive’ and driven by a ‘if you don’t talk about it, it won’t happen’ mentality? Who tells them, ‘you don’t have to be super positive every day, its normal to have bad days’, and gives them a safe haven to express this?

The possible situations are endless, and I haven’t even got to the easier basics like ’How can I visit my husband in hospital, I don’t drive?’ ‘How can I pay my bills, when I’m not earning at the moment?’ ‘How can I get my toe nails cut?’ etc. etc….

As an advocate, I have supported real people through all of this and more. I am trained and prepared to have the conversations that people don’t necessarily want to have with loved ones, if indeed they even have anyone to have these conversations with at all.

I would like the service to be offered to every person affected by a cancer diagnosis. The decision to accept the offer is theirs, the right to change their minds, at any time, one way or another is theirs. But in not making them this offer, it is in fact depriving people of a real opportunity. Advocacy offers each individual who is on an ‘unasked for journey through the unknown’ to have a ‘tailor made’ experience and to regain some feeling of control – which could completely change things for them – and in fact for everyone involved.

As an advocate, I have a few frustrations, but my primary one is clear; I don’t understand why an advocate is not offered to everyone.

Jan Dyer, peer advocate, Dorset Macmillan Advocacy