Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Older people, family and public policy

Today’s guest blog is from Kirsty Woodard of Ageing Without Children:

The assumption that all older people have family is deeply embedded in our thinking, policy and delivery of care. Think of all the solutions to issues associated with ageing that start with “talk to older people and their families”. This is largely understandable; 92 per cent of unpaid care is carried out by family members; however there are already 1 million people over the age of 65 who have never been parents which will double to 2 million by 2030. Still more older people are estranged from their children, have been predeceased by them or have children in no position to support them for a variety of reasons. Add to this the growing number of older people who are single, widowed or divorced (the rate of divorce in people over 50 is rising faster than any other age group) and it is clear that an unprecedented demographic shift is taking place. More older people than ever before are living longer but are not and will not be in a position to rely on family support.

There is often an assumption that older people without children have developed good relationships with wider kin and have strong friendship networks that can step in and substitute for family. Unfortunately, the research to date shows that this only works when older people are healthy and need short term or one-off support. If or when people’s health deteriorates and care needs increase, these wider networks fall away just at the time they are needed most.

The reality of care for people without children

Unfortunately thinking and planning on care has not yet caught up with this reality. For example, 80 per cent of older people with disabilities are cared for by either their spouse or child yet the number of older people with disabilities who live alone and have no child is projected to increase rapidly, rising by nearly 80 per cent between 2007 and 2032. Evidence shows that people ageing without children receive less unpaid care than those with children and consequently are forced to rely on paid for care yet access to social care has never been so limited. People ageing without children are 25 per cent more likely to go into residential care but the residential care sector in the UK is in parlous state.  People without children are up to a third more likely to be carers for their own elderly parents but there is little focus on their specific needs as carers ageing knowing there is no adult child to support them.

As a society we must plan care around the population we have now and will in the future, not one from the past. Exhortations for families to do more not only belie the huge amount families are doing providing care and support but exclude those without.

So what can we do?

Firstly, we need to review our care services from the point of older people doing everything entirely without support from family. This includes everything from finding out information to getting their washing things in the event of unplanned hospital admission to creating a lasting power of attorney to arranging hospital discharge to searching for a care home. Only then can we see how much family support is required to make the system work and where we need to change things so it works for those without. Care services that work for people without family support will work far better for people who do have family too

Secondly, care services must make a greater effort to understand why so many more people are ageing without children and the issues that face them. It is not possible to design services that work if you do not understand the people you are designing them for. People ageing without children must be included in all co-production and planning on ageing as a matter of course.

Thirdly services must consider their use of language. Branding services with “grandparent/grans/grannies” unless they specifically mean only grandparents should use them exclude older people who are not and never will be grandparents.

Fourthly, people ageing without children should be supported to form groups both on and off line where they come together to form peer support networks. People ageing without children want to help themselves and each other.

Fifthly, the gap around advocacy must be addressed. People ageing without children have been very clear on their fears of an old age without a child to act as their intermediary and advocate in their dealings with care services particularly if they become incapacitated mentally or physically.

Finally, everyone, both people ageing without children and those who do have family, should be helped to plan for their later life.

People ageing without children must be brought into mainstream thinking on ageing. By working collectively we can as individuals, communities and wider society address the needs of older people without children or any family support. Only by working together can we care differently for people ageing without children.

The views expressed in this blog are those of the blog’s author alone and do not necessarily represent those of OPAAL (UK). OPAAL (UK) is not responsible for the accuracy of the information supplied in blogs by external contributors.

Kirsty Woodard, Ageing Without Children

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Be Bold for Change on International Women’s Day

Today is International Women’s Day and the campaign theme is Be Bold for Change.  Big Lottery Fund are speaking to women who have made a big change in their lives and their communities.  Our volunteer peer advocates make a tremendous contribution, choosing to give their time to support their peers because they know that they can use their personal experience of cancer to make a difference to other older people’s lives.

 

Today we’re focusing attention on Claire’s Story, from our recent publication Time: Our Gift to You, which features volunteer peer advocates talking about why they volunteer, and what they themselves gain from their volunteering experience.  Claire has used her own experience of breast cancer to support Sally, her advocacy partner who has the same diagnosis.

Claire’s volunteering story:

“Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

One of the older people affected by cancer that I’ve supported is Sally (not her real name). She was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Sally lives alone, struggles to get out and had become very isolated and depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

In the first few weeks when I visited Sally at her home, we often would just talk and share experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

Since then, I have been able to help Sally in a number of ways. For example, I contacted Breast Cancer Care, I knew how good they were from my own experience, and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Sally suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Sally had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the Macmillan Cancer Support website. Sally doesn’t have a computer or access to the internet. I took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.

Most recently I was able to help Sally with her application for a one-off Macmillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her and I could use my experience to help with the spellings of all the drugs she was taking! She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

I hope that I have managed to convey that working with Sally has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system and how to get support. I am really glad to be able to put my experience to good use.”

Read more about the inspirational volunteers who are being bold for change on behalf of and alongside their peers here

Marie McWilliams, OPAAL


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..faced with a cancer diagnosis, feelings of isolation and confusion are only magnified..

Karen Renner, who has recently taken up post as Volunteer Coordinator at programme partner AgeUK Northumberland, gives us an insight into why delivering the Cancer, Older People and Advocacy programme is so important in Northumberland:

I started working as the Volunteer Coordinator on the Macmillan Cancer Advocacy Programme with Age UK Northumberland in September.

I have worked with volunteers in various roles in the past but I am new to advocacy.

I am passionate about the project.  As Macmillan say, ‘no one should face cancer alone’ but sadly, in the case of older people this can be all too true. Over one million older people haven’t spoken to a friend, neighbour or family member for over a month. This is sad enough but faced with a cancer diagnosis, feelings of isolation and confusion are only magnified. That’s where our project comes in and can assist in ensuring that voices are heard, informed decisions taken and quality of life maintained.

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Even those fortunate to have the support of loved ones can feel lonely.  It is not unusual for older people to keep their concerns to themselves: they don’t want to trouble anyone and they don’t ‘want to be a burden’.  An advocate can bridge this ‘gap’.

Working in Northumberland provides its own unique challenges and rewards.  The county has vast rural areas with pockets of small communities that don’t have the ready access that more urban counties have to services and professionals. Older people are typically traditional, proud individuals who like to go about their daily lives with the minimum of fuss. That’s why the project is so important.  One in three of us will be diagnosed with cancer at some stage of our lives and everyone should have support at that time.

Karen Renner

Karen Renner

I am fortunate to be working in a small team of dedicated, enthusiastic people who all feel the same way.  We are working towards the vision of OPAAL: that is, the provision of high quality independent advocacy. Our volunteers will be the key to achieving this.

Karen Renner, Age UK Northumberland/Macmillan Volunteer Coordinator


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“this empowered her to then make the next step on her own…”

In today’s post John, one of our dedicated peer advocates tell us his story:

I came to volunteering following my retirement. I wanted to use some of the skills I had acquired during my working life in hospitals and my own personal experience of cancer to support others.

As a volunteer advocate for Age Connects Cancer and Older People Advocacy project, I provide non-judgemental support ensuring that the older people’s views and wishes are represented. As a volunteer advocate I ensure there is a better understanding of the clients’ needs, and follow instruction solely from my client; confidentiality and trust is key to this role.

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One call was to support a lady with her decision about moving. I went to visit her at home and found she lived in a top floor flat with no lift. She had difficulty walking so was finding herself increasingly staying at home and going out less as she couldn’t face the thought of struggling with all the stairs.

She asked if we could gain some information from her Housing Association, so with her consent they were contacted and the information was obtained on her behalf.  This information was discussed when I met with her face to face and we chatted at length about her possible options. She liked living in a flat as it was small and manageable. She also liked living on a higher level as she felt safe. However, she understood that with no lift and an impending operation which would incapacitate her even further, life in her top floor flat was going to become even more isolated and difficult. We talked further about the possibility of improvements she may find in her daily life if she moved to a property that had access to a lift and following this she felt more confident to phone the housing association to discuss her options and take it further. Having someone to talk to was vital for this lady, she had limited family and initially she didn’t know how to start the process of enquiry about moving, or even whether it was a viable option. Having spent time with her talking this through, I feel this empowered her to then make the next step on her own.

Another call was to visit a lady in Llandough Hospital. She had battled hard against her cancer and was now receiving end of life care in hospital. There was an absence of relatives so she was pleased to see a visitor. I had previously assisted her with some paperwork when she was at home, so it was nice to see her again, albeit in sad circumstances. I sat with her, held her hand and waited to see if she wanted to talk. When someone’s very unwell they may not want to listen to a chatterbox! Just being there and holding hands can help a person feel better.

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She said she had declined physiotherapy because she was frightened in case she should fall. I spoke with the ward nurse and voiced the clients concerns – we arranged that the physiotherapy would start again.   I enquired about my clients care as there had been some queries about a move to another hospital, at that point in time she was too poorly for a move to take place and going home was not an option as there was no one to take care of her.  The process of what was currently happening was explained to my client and she understood why these decisions had been made. I made arrangements to visit again the following week, but very sadly my client passed away.

Through my volunteering work I support older people who have been touched by cancer with a range of issues, and hope to continue to do so. I can’t help with everything but I do my best. I make the extra effort to give my time and listen – I always listen.

John, peer advocate, Age Connects Cardiff & the Vale

Living in Cardiff and the Vale? If you or someone you know over the age of 50 is affected by cancer and could benefit from our service, please get in touch to discuss how a volunteer advocate could help you.

Call 029 2068 3681 or email copa@ageconnectscardiff.org.uk

 

 


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Driver, moral support or something more?

Kathleen Gillett from Dorset Macmillan Advocacy looks at what an advocate can and will do to support an older person affected by cancer:

When I explained to someone recently that peer volunteer advocates could accompany the person they are supporting to medical appointments they remarked ‘Like a befriender then?’ ‘Yes and no’, I replied.

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The advocate, in addition to walking in the door with the patient (and carer) can do any or all of the following:

  • Ensure the person has remembered the appointment, has satisfactory transport arrangements and knows exactly where to go
  • Ensure the person knows what the appointment is for and who they are going to see
  • Ensure the person has thought about the previous appointment and prepared for this one by thinking about what they would like to get out of it and writing down any questions they would like to ask
  • Prompt the person to ask questions they have prepared and, if needed, ask the questions on the patient’s behalf
  • Monitor the person’s understanding of any terminology used and ask them if they would like fuller explanations
  • If the person is asked to make a decision about treatment options check whether they feel ready to do so and if not how much time is available
  • Take notes during the appointment to make a written record for the person to refer back to later
  • Make sure the person is clear at the end of the appointment what the next step will be
  • Have a cup of tea while waiting for transport home
  • Later on run through what happened at the appointment to see how the person feels it went, whether they felt comfortable and were treated with dignity and respect
  • Discuss any treatment and care options and their implications and whether more clinical information is needed
  • Agree with the person if any new and immediate needs have arisen and what they would like to do next.

I was reminded of reading Ken Worpole’s obituary of the hospice architect, Ian Clarke. Clarke ‘believed passionately that hospitals for the dying should be welcoming, reassuring places and he spent his career designing uplifting spaces for palliative care’.  Clarke wrote of healthcare environments; ‘Why can we not get away from the ubiquitous ‘no-place’ hospital corridors that we are so used to?’

 

I agree that environment is important and have visited well designed hospices and cancer centres that clearly enhance wellbeing. However, for me when I go for the first time to a new place or have an appointment of significance in a familiar place, feeling well prepared and having a trusted person to go with me is equally important. This, coupled with the friendliness and manner of the staff that I meet there, will make a bigger impact on me than the surroundings in isolation.

Kathleen Gillett, Dorset Macmillan Advocacy


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People Affected by Cancer: Not Alone

“What’s that tardis-like box doing in Churchill Square?” That’s what shoppers in Brighton were asking on the last Friday in August.

The isolation box, a touring art installation by Macmillan, was raising awareness that ‘cancer can be the loneliest place’.impetus logo (50mm)

Members of the public were invited to try the isolation box and experience how it feels to be alone in a crowd. Once inside participants could listen to 2 real-life stories told by local people, John and Sarah, about their experiences of having cancer. John, 64, from Hove talked about how lonely his diagnosis made him feel. A few passers-by shared their own stories.

From the outside you could see into the box, but once inside I could see only blurry figures. Amidst the buzz of the busy shopping centre, with people all around me, I felt cut off from the crowd. For those few minutes, despite being aware of people and voices surrounding me, there was a barrier between me and the rest of the world.

The isolation box

The isolation box

People affected by cancer can feel incredibly lonely even when they have friends and family. Research has shown the devastating impact of loneliness, causing people to skip meals, attend vital appointments alone or even refuse treatment. Over 60% of patients go for surgery and radiotherapy appointments alone. Many said this was because they didn’t want to burden friends or family, or the person they wanted to go with them was not available. Some people had nobody to ask.

So what support is there for isolated cancer patients in Brighton? The Macmillan Impetus Cancer Advocacy Service works with some of the most isolated people affected by cancer in Brighton & Hove: older people, people with mental health problems, people with learning disabilities and people with autism spectrum conditions.

They may have limited support networks, or find it less easy to access the information or support they need.

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For someone affected by cancer there can be lots of information to take in and decisions to make. Navigating the complexity of health and social care systems can be frustrating and difficult.

Cancer is a life-changing experience. It can generate anxiety and stress and people may lose confidence. This may limit their ability to deal with life in the same way as they did before becoming ill.

Sam Bond

Sam Bond

Having someone to help can make all the difference. Advocates act for the person they are supporting. They can visit the person at home or another setting. Advocates have time to listen and find out what is important to the individual. They can help people sort out many of the issues that arise when someone is affected by cancer, as well as general-life difficulties which the person may find it harder to deal with. Advocates can find out about support and activities in the person’s own community.

Cancer Advocacy support aims to reduce isolation, link people up with the support they need, and ensure they are able to make informed choices and express their wishes.  This benefits the individual and everyone involved in their care.

Reach out to someone affected by cancer who may be isolated and lonely. If you know someone who would like the support of one of our cancer advocates, contact The Macmillan Impetus Cancer Advocacy Service on:

01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Brighton & Hove Impetus


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Macmillan Cancer Support believes that no one should face cancer alone and nor should cancer trigger social isolation and loneliness

‘Alone in Dorset’ was the theme of this year’s county-wide conference hosted by Dorset Age Partnership, Dorset Fiftyplus Forums and Dorset POPP (Partnership for older people programme).

The day was a mixture of presentations and small group discussion. We heard case studies of the work being done by agencies such as Purbeck Good Neighbours to tackle social isolation and loneliness. Debbie Ward, Chief Executive of Dorset County Council, stressed the need to intervene early and prevent people from becoming lonely.

I realised that preventing one person’s isolation can have greater unforeseen positive consequences and gave the example to attendees of how a Dorset Macmillan Advocacy volunteer advocate enabled a person to regain confidence after their cancer treatment so that they did not become socially isolated but instead returned to driving and resumed taking three older neighbours out every week.

Our discussion group included one of the POPP Board members and Andrew Archibald, Head of Adult Services for Dorset. We considered the factors that contribute to loneliness and social isolation, the role of Public Health and where responsibility lies; how much responsibility rests with the individual themselves not to become isolated and how many factors may be beyond a person’s control such as simply outliving peers, partners and even children as well as illness and disability.

Andrew Archibald, Head of Adult Services at Dorset CC

Andrew Archibald, Head of Adult Services at Dorset CC

I was reminded of the original call to action of the Campaign to End Loneliness entitled Safeguarding the Convoy, a title based on ‘Jenny de Jong Gierveld’s concept of one’s personal ‘convoy’: the assembling of family, friends, social contacts, work, passions and pastimes, resources and assets which you take forward through life, and which secures your confidence and enables you to lead the life you choose to the full. This convoy travels with us through our lives, but is prey to assaults and losses along the way, especially in later life.’

Paul French a retired GP who is now on Dorset CCG’s Governing Body as locality chair for East Bournemouth and the clinical lead for Mental Health and Dementia regretted that GPs cannot do more. He described true social isolation as a chronic condition which could lead to persistent loneliness.  He felt that social and health care commissioners should work together to support those who are socially isolated through initiatives such as Better Together.  Above all he said that GPs themselves need to be aware of the issues and work with local authorities and the voluntary sector to provide support using Social Prescribing.

Dorset Macmillan Advocacy staff team and volunteers continue to work on raising awareness of our service with GP surgeries across the county.  We aim to prevent a cancer diagnosis from becoming the trigger for social isolation and loneliness and to reduce isolation and loneliness for those already affected.

Kathleen Gillett, Dorset Macmillan Advocacy