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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We are NOT invisible!

Whilst many Lesbian, Gay, Bisexual and Trans (LGBT) people report many good experiences of care, there are some areas that still need attention. The biggest one that could be improved is health professionals including our partners in discussions about treatments and care plans.

There are too many stories of how health professionals don’t include the partners in discussions or refer to us as “your friend here today”. This is what my partner’s doctor kept doing to us. Even though he met me and my partner on the first day and every time we met, he kept referring to me for the two years we saw him as “your friend.” This made me feel excluded and my input into his care was not valued. Sometimes I felt that I was invisible even though I was caring for him every single day when he was not in hospital.

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LGBT people wish to have their partners and carers involved in their care rather than them being ignored or disregarded. We want our partners and carers involvement to be welcomed and valued by cancer professionals. They appreciate it when their relationships are acknowledged, accepted and respected.

KPAIS

There are some really simple changes that health professionals can make to help to facilitate disclosure by using gender neutral terms (e.g. partner) and not using language that makes assumptions about the person with cancer (e.g. Mrs). They can enquire as to who has come along with the person with cancer. LGBT people appreciate it when assumptions are not made about them, their sexual orientation, relationships, living arrangements or support network, and when professionals ask about these important areas of their life.

 

Sean Donnelly, Knowsley LCCB member


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A Better Life for older people

A good quality of life is something that everyone wants for older people. The Joseph Rowntree Foundation’s (JRF) A Better Life programme set out seven important challenges which will help older people with high support needs achieve a better quality of life.

It arrived at these challenges having explored ‘the things that older people say they want and value’ (Katz et al 2011) and approaches and initiatives that could make a difference through a five year programme of work.

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SCIE and JRF have produced an At a glance briefing that summarises each of the seven challenges set out by JRF (Blood 2013), they have produced it to identify key SCIE resources that will support people working in social care address each of the seven challenges in their practice and relationships with older people with high support needs and achieve the overall aim of supporting choice, control and quality in their lives. The SCIE resources can be accessed here, the seven challenges are listed below.

1. Old age is not about ‘them’: it is about all of us
2. Older people are individuals and they are, as a group, becoming more diverse
3. Relationships matter to us whatever our age; we have a fundamental human need to connect with others meaningfully
4. Older people with high support needs have many assets, strengths and resources that they can also bring to the development and provision of services
5. Whatever our age or support needs, we should all be treated as citizens: equal stakeholders with both rights and responsibilities
6. The individual and collective voices of older people with high support needs should be heard and given power
7. We need both to innovate and improve existing models

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It is important to recognise that while there are seven challenges they are all connected and need to be addressed as a whole rather than through acting on them individually. Our COPA project recognises and aims to respond to each of the above challenges proactively as part of our national project. If we take each in turn I shall illustrate some of the ways the project is addressing these challenges:-

1. Old age is about All of us and indeed we involve older people in every level of our project, one example is as Cancer Champions helping to guide and further develop,and promote our cancer support service.
2. OPAAL believes older people are in fact the most diverse group of people in the community as such we aim to harness and respond to this diversity, this year for example by aiming to target older LGBT individuals that need the support of a Peer Advocate.
3. The advocacy relationship is like no other, here we have an older person affected by cancer helping their peers, advocates quickly develop a rapport which soon matures into a trusting reliable relationship, one which encourages confidences, and enables those who are vulnerable to focus their energy on their treatment and care needs leaving the advocates to manage other concerns and worries.
4. We actively seek out older people with high support needs, they are invaluable to us as they have empathy with others and a deep understanding of what it is to be vulnerable on occasion. As volunteers once trained they make wonderful advocates.
5. Older People involved in COPA understand their responsibilities and enjoy may rights to be heard and to contribute in many different ways to the ongoing success of our project.
6. Advocacy is all about ‘Voice, Choice and Control’ we amplify older people’s voices ensuring they are heard where needed to make sure older people get a fair deal when it comes to cancer care and treatment. For example one of our volunteers is due to address a major national NHS Federation conference in Liverpool on 4th June, she will speak of her experiences as a cancer survivor and peer advocate.
7. With older people’s help and support together we all strive to improve our services as this project is all about innovation, proving that older people can help their peers and provide the support so badly needed when people become affected by cancer.

We are not complacent, this is not about sitting back and saying we are doing it, it’s about ensuring that these challenges continue to be acknowledged, owned and addressed by all those seeking to work with and support older people.