Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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An exciting night at the HSJ Awards

OPAAL was absolutely delighted some weeks ago to find out that the Cancer, Older People and Advocacy programme was shortlisted for an HSJ Awards (Health Service Journal) in the Supported Self Care category.

Wednesday last week, November 22nd, saw the awards evening in the Intercontinental Hotel at the O2 in London. I attended along with Bob and Maddy Smith, peer volunteer advocates and Kathleen Gillett, Macmillan project coordinator, all of Dorset Macmillan Advocacy. Also attending as a guest of NHS England was OPAAL Trustee and Vice Chair, Catherine Wood. NHS England, as sponsors of the Supported Self Care category award, hosted two tables and Catherine was seated at one of these and was very well placed centrally, near to the stage.

The night began with a bit of trauma for myself, Bob, Maddy and Kathleen. The Blackwall Tunnel near to the venue had been closed due to a road traffic accident. This led to major disruption on the roads for miles around the area. After an hour and fifty minutes in our cab for a journey which should have taken thirty, we arrived late and having missed the opening speeches. Fortunately after wolfing down our starters we caught up with every one else at our table. All had been nominated for awards although not in the same category as us.

Catherine, Maddy, Marie and Kathleen

Marie, Kathleen at the back with Bob and Maddy in front

Sir Lenny Henry

 

 

 

 

 

 

 

 

 

After a lovely meal the awards started in earnest. Hosted by the wonderful Sir Lenny Henry, the excitement for us mounted and mounted. Our category was midway through the programme so we had a bit of time to wait to find out the result.

I was so hopeful that our name would be called out as winner. Being nominated and shortlisted was a real achievement but at OPAAL we were so keen that our wonderful peer volunteers and cancer champions be nationally recognised by this award.

Unfortunately it wasn’t to be. First Steps Derbyshire’s Online Befriending Service was the name called out rather than ours. Whilst disappointed, we applauded the winner and consoled ourselves that it genuinely was a massive achievement to be shortlisted and had gone a long way to raising the profile of advocacy on the national stage.

Here at OPAAL we see everyone involved in the Cancer, Older People and Advocacy programme as winners and we thank each and every one. All have made a difference to the lives of older people affected by cancer.

Marie McWilliams, Operations Manager, OPAAL

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Trick or Treat?

Today Rhonda Oliver of Advocacy in Barnet provides us with food for thought:

Halloween is looming – rooted in the ancient Celtic festival of Samhain, it marks the end of Summer and the harvest, and the beginning of the cold dark winter associated with human death, when the boundary between the living and the dead becomes blurred.

According to the Office of National Statistics more people die in winter than in summer and the Grim Reaper pays most house calls in December, January and February. So, if you do not want to think about death and dying, look away now!

Is there a right time to have an advance care plan? Who should have one? What should it cover?

A care plan is for anyone, with increasing relevance for older people who are likely to be nearing the end of their lives. However, it could be for someone who has particular health needs or someone who just wants to record their choices and preferences for their care and treatment for any other reason.

It is a good idea not to leave this until a crisis happens when you may not be able to participate in making choices. In an emergency health professional may have to make rapid decisions about your treatment and a care plan can help to ensure that you get the treatment that is best for you and that you would have wanted.

A care plan is created through conversations with your family and carers, your health professionals and you. You keep the plan with you and ensure that it will be available immediately in an emergency, say to ambulance crews, out-of-hours doctors, accident & emergency and other hospital staff if you are admitted. Some people keep their care plan displayed on their fridge door; others leave it inside the fridge in a plastic bag! This is often the first place an ambulance crew will look.

The plan will guide clinicians to balance the priorities for your care, i.e. would you want them to focus on treatment to prolong life or to focus mainly on providing comfort? The plan should include your choices regarding  treatments that you would want to be considered for or those you would not want, for example would you want cardiopulmonary resuscitation (CPR)? If the answer to this is no then you should flag an advance decision to refuse treatment (DNR) or any other important planning documents in the plan. It is very important that your understand the parameters and implications of an advance decision to refuse treatment and that you discuss this with your GP and family.

Talk to your local advocacy organisation if you are thinking about your future care. It will support you to make your choices and preferences heard.

Once you care plan is made it is not set in stone and should be reviewed on a regular basis. It should, however, provide you with peace of mind so you can cuddle up on the sofa with your loved ones, with a cup of tea (or something stronger), watch the telly and wait for spring.

 

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy & Advocacy in Barnet


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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