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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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

 


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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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Positive practice in mental health services

Here at OPAAL we’re absolutely delighted to report that the Cancer, Older People and Advocacy programme has been shortlisted for an award in the National Positive Practice in Mental Health Awards in the “Older people’s mental health and dementia” category. This will help us continue to raise the profile of advocacy and peer support.

The Positive Practice Mental Health Collaborative is a user led multi agency collaborative of seventy-five organisations, including  NHS Trusts, Clinical Commissioning Groups, Police Forces, third sector providers, front line charities and service user groups. It aims to identify, and disseminate positive practice in mental health services by working together across organisations and sectors, to facilitate shared learning, and to raise the profile of mental health with politicians and policy makers.

Positive Practice is dedicated to providing a directory of positive practice in mental health services and the Cancer, Older People and Advocacy programme is now listed in this directory.

Having carried out its first service user focused assessment of a mental health service well over 20 years ago, and having been identifying and sharing positive practice for almost as long, the collaborative came to the conclusion many years ago that there is a ‘perfect mental health service’ out there, ‘it’s just not all in one place’. By developing this directory they intend to demonstrate this theory.

The directory also features positive practice examples featured in the pathways developed for NHS England by the National Collaborating Centre for Mental Health.

The full directory as it stands can be found here

The awards ceremony takes place on Thursday 12th October 2017.

Wish us luck!

Marie McWilliams, Operations Manager, OPAAL

 


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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