Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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The transition from professional to volunteer which brings a wealth of expertise

The volunteers who have shared their stories in Time: Our Gift to You come from all walks of life but I felt it was significant that several were retired Health or Social Care Professionals.   I wanted to know more about what motivates them to train as an advocate so I asked Mike Goodman, a newly retired Clinical Nurse Specialist who joined Dorset Macmillan Advocacy last year, why he volunteers and what he feels former Health Professionals in particular can bring to the role. Kathleen Gillett, Coordinator, Dorset Macmillan Advocacy

‘I was interested in becoming an advocate because, despite being retired, I still have an interest in helping people live with and recover from a diagnosis of cancer. 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 transition from professional to volunteer is a tricky one and it can be rather easy to slip back into a formal or professional approach to a situation rather than acting and speaking as a lay person – or simply imagining being the patient. However empathetic professionals think they are, because they have been trained/educated and because they are busy they quickly slip into “professional” mode and forget just what it is like being a confused, slightly scared, often lonely recipient of health care services.

Mike Goodman

I am sure advocates can be effective whether they have been cancer patients themselves, or have been the carer of someone with cancer or have been health care professionals. All those experiences will enable you to be a help and support. They would all bring different skills and abilities to the many and varied problems that the cancer partner is grappling with. Probably the greatest skill lies with the Macmillan Senior Advocate or Volunteer Coordinator in choosing which advocate to link up with each new partner.

Health Care professionals do have the ability to understand how the wheels turn in a hospital department or what a GP really needs to know in order to change the experience for a patient who is in a crisis. They will understand that it is hard to get something done on a Friday afternoon when most departments in a hospital are winding down for the weekend or that a referral between teams will have to go through an MDT meeting before a decision is made. Explaining that there is no simple blood test or screening process for some cancers comes as a shock to some people in the community who are reading the tabloids and grasping at every tiny news item that has the word cancer in its headline.

Retired professionals can play an important role in advocacy but, at the end of the day, it is that human touch, that word of encouragement, that listening ear that every person affected by cancer needs and wants and that is a role that every advocate seeks to fulfil.’

Mike Goodman, retired CNS.

Our thanks to Mike for sharing his thoughts.


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Coping with more than cancer

In today’s blog post Kathleen Gillett from Dorset Macmillan Advocacy looks at the issues facing older people affected by other long term conditions as well as cancer:

Coping with cancer is one thing, coping with cancer and one or more other long term condition is another. Peer advocates listen to the people they support to discover what matters most to them and may be surprised to find that having cancer can be the least of their worries.

At Dorset Macmillan Advocacy we have collected some information on the long term conditions and health problems that the people we are supporting are living with.  We have found that of 110 people referred to us for support in 2015 50 have at least one other long term condition, 26 have two conditions including drug and alcohol dependency issues and 7 have 3 conditions.  The conditions include sensory loss, diabetes, heart condition, memory problems, arthritis, MS, ME, epilepsy, hiatus hernia and mental health issues. Not everyone wants to disclose all their health issues and we have not in every case methodically recorded where this information has been given so I think it is safe to say that there are likely to be more issues than we actually know of.

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In fact 70% of people with cancer have one or more additional long term condition according to research carried out by Macmillan Cancer Support.  It’s clear that the situation for people with limited social support networks, such as older people, can be very difficult.  Independent advocacy services such as ours can be flexible and support people with their concerns when they are wider and more complex than the cancer diagnosis.

Health professionals are aware of the implications especially as regards treatment options for older people.  The British Geriatric Society has a special interest group (SIG) for Oncology which met for the first time last September and Kath Parson of OPAAL gave a presentation about the Cancer, Older People and Advocacy programme.  In a write-up of that event Dr Lucy Dumas said ‘Older patients with multiple medical co-morbidities and/or issues with care or coping at home represent a significant challenge when it comes to evaluating whether or not they will be able to tolerate potentially toxic therapies’.

Over the next year we hope to gather more information about the wider health issues of the people that we support. As well as asking for their feedback on the difference our service has made we may be able to gather their views on how their other conditions have impacted on their cancer patient experience.

Kathleen Gillett, Dorset Macmillan Advocacy


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Linking with local befriending services in Bournemouth

The team from Dorset Macmillan Advocacy at Help and Care, Jo Lee, Senior Advocate and Kathleen Gillett, Volunteer Coordinator, recently shared challenges and solutions with colleagues from local volunteer befriending services at The Grove Hotel in Bournemouth (a retreat for cancer patients and those with serious illness) at the invitation of Anita Rigler from Macmillan Caring Locally.

Volunteer advocacy and volunteer befriending schemes are both models of peer support although they differ in several important aspects and the scope of advocacy support is, I would argue, considerably wider.  The mechanics of providing a good experience for volunteers through good practice in recruiting and training, matching and retaining are however very similar.  For both roles volunteers require highly developed listening skills and an awareness of the importance of the boundaries of the role. A good discussion was held on supporting volunteers when advocacy partnerships or befriending matches are ended.

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L to R Carol Stevens of Faithworks Wessex – Compass Project, Anita Rigler of Macmillan Caring Locally, Jo Lee, Macmillan Senior Advocate at Help and Care, Jan Childs of Christchurch Angels, Claire Bridges of Dorset Mind

Having a good understanding of the differences in our services will enable us to signpost and refer on to the most appropriate source of support. We are opening our next volunteer induction training day to the befriending coordinators to give them an indepth understanding of the scope of peer advocacy. The new networking group plans to meet twice a year.

Kathleen Gillett, Dorset Macmillan Advocacy

 


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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

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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.

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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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Memory Network

Dorset Advocacy recently commissioned OPAAL to write a good practice guide drawing on the learning from Dorset Advocacy’s Memory Network project, which was funded by the Health and Social Care Volunteering Fund.  The project had three key aims:

  • To help people in the earlier stages of dementia to capture their life stories
  • To train and support volunteers as life story facilitators
  • To use completed life stories as a resource for ensuring person-centred care planning continues, even if the person subsequently loses capacitywp0f316159_06

Volunteers were trained to help people to capture their memories on iPads, using the TimeBox app.  The benefit in using iPads was that source materials such as historic photos, songs etc. could be retrieved during memory sessions and used as triggers for discussion.

Gary Kitchen was the OPAAL consultant given the task of compiling the good practice guide.  At first, the project developed much more slowly than Dorset Advocacy had anticipated.  There were difficulties in recruiting and retaining volunteers, and in identifying suitable sites for memory recording to take place.

Mike Pochin, Dorset Advocacy

Mike Pochin, Dorset Advocacy

 

 

Things have developed much more quickly over the past year, however, and this has generated useful good practice data.  Gary’s completed report covers the benefits of memory recording, ethical considerations, creating a framework for a memory record, and other aspects too.  A key learning point is the need for further consideration of whether, and how, memory recording could be undertaken with people who have already lost the capacity to consent to creating a life story.

 

 

 

Although Dorset Advocacy’s Memory Network project is now completed, work on developing life stories continues through the organisation’s involvement in the local Memory Support and Advisory Service, led by Alzheimers Society.  Staff and volunteers are offering advocacy and/or life story facilitation to people who have received a recent dementia diagnosis.

The OPAAL/Dorset Advocacy Guide ‘Supporting People with Memory Loss to Record their Memories and Life Stories’ by Gary Kitchen is available from enquiries@dorsetadvocacy.co.uk

Mike Pochin, Dorset Advocacy


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Encouraging news re Dying at Home

New information collated by the National End of Life Care Intelligence Network

Published: 26 June 2015

PHE’s National End of Life Care Intelligence Network (NEoLCIN) works with partner organisations to collect, analyse and present end of life care intelligence from a wide variety of sources. This report summarises the key findings of the network and its partners over the last year. Although much of the research has been published previously, this is the first time it has been brought together in one place.

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New findings show there is a growing understanding within the health sector of what is important to people at the end of life.

Key findings from the report include:

The proportion of people dying at home or in care homes continues to increase
Patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference
Two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed.

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Factors most importance to people at the end of their life were; having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity. This is entirely consistent with what older people tell our Advocates they want to achieve when describing a ‘good death’.

More GPs are having conversations with people about their end of life care wishes but 25% still say they have never initiated such a conversation.

Download the report, http://www.endoflifecare-intelligence.org.uk/view?rid=872


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Preventing an older woman being moved from hospital to residential care against her wishes

Janet was staying in hospital after a stroke. She had been a prisoner of war in Japan during World War Two, which had led to some mental health problems. Hospital staff saw Janet re-enacting experiences from her time as a POW, like washing her clothes with rocks and hanging them out to dry on the hospital fence. After some time, hospital staff wanted to move Janet to a care home, as it would be cheaper to provide care there.

Janet’s advocate, Steve, was concerned about this decision as Janet had said she wanted to return to her own home. The hospital was pushing for the care home placement because of the mental health issues Janet was displaying. However, working with Janet, Steve thought that it was being in the hospital’s institutional setting that was causing her to relive the past, and that a care home would make things worse.

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Steve accessed human rights training from BIHR. During his advocacy with the hospital and local authority Steve was able to refer to Janet’s human right to respect for private life under the Human Rights Act (Article 8), which includes having a say in decisions that affect us, and protecting mental well-being. He explained how putting Janet into residential care could compromise her human rights, whereas supporting her to return home as she wanted could respect her human rights and help her recover. Following Steve’s human rights advocacy, the local authority decided it was able to support Janet’s care at home.

In addition to protecting Janet’s human rights, Janet was supported to contribute to her own decisions about where she should live and is a classic example of how advocates work to ensure people’s voices are heard in decisions affecting their lives and well being.

This story was provided by our amazing colleagues working at the British Institute for Human Rights find our more about their work here https://www.bihr.org.uk/