Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Today is World Cancer Day

On World Cancer Day the World Health Organisation (WHO) is warning of a global tidal wave of cancer.

The World Cancer Report 2014 is now available to download and warns that we need to do more to prevent cancer happening in the first place.


The major sources of preventable cancer include:

  • Smoking
  • Infections
  • Alcohol
  • Obesity and inactivity
  • Radiation, both from the sun and medical scans
  • Air pollution and other environmental factors
  • Delayed parenthood, having fewer children and not breastfeeding

For most countries, breast cancer is the most common cancer in women. However, cervical cancer dominates in large parts of Africa.

There does appear to be a degree of ignorance around some of the underlying causes of some cancers: A survey of 2,046 people in the UK by the World Cancer Research Fund (WCRF) suggested 49% do not know that diet increases the risk of developing cancer.

A third of people said cancer was mainly due to family history, but the charity said no more than 10% of cancers were down to inherited genes.

New treatments and earlier diagnosis will also be needed.

As cancer rates and the number of older people increase there will be an incremental rise in need and demand for our advocacy services. More older people affected by cancer will need to be trained as volunteer advocates to support their peers. We’ll keep working with our project partner Macmillan Cancer Support to continue to make a difference to the lives of the older people we support.

Marie McWilliams



1 Comment

Success for one of the pilot projects!

Staffordshire Peer Advocacy Project: support for older people with cancer

A growing number of older people with cancer across Staffordshire will now receive additional support and information thanks to the success of the OPAAL-Macmillan advocacy pilot project, jointly funded by Macmillan and the Big Lottery Silver Dreams Programme.

The success of the pilot cancer advocacy service, delivered by the Beth Johnson Foundation covering Stoke-on-Trent and North Staffordshire, has lead to the announcement of further investment from Macmillan over the next 3 years to extend the pilot beyond the initial 18months and to increase the reach of the service to make it Staffordshire wide.

BETH LOGO small document

The pilot project recruited 10 volunteer advocates who had a direct experience of the impact a cancer diagnosis can have themselves. These advocates  have supported 36 local people over the age of 50, who were facing their cancer diagnosis alone.

Advocates provide support around a wide variety of issues including treatment and care, social and financial difficulties, employment issues and providing a listening ear. One homeless client has been supported to apply for sheltered housing with a social housing association, obtain furniture from the local furniture mine, to have a DWP assessment and apply for Personal Independent Payments.  An elderly gentleman, with no relatives, requested the advocate to obtain information on Will making, organ donation, Lasting Power of Attorney and advanced decision making regarding his care. The advocate discussed these issues with the client and was present during the appointment with the Solicitor and ensured that the client had all his wishes recorded.

Kath Curley

Kath Curley

Kath Curley, Cancer Advocacy Project Co-ordinator at The Beth Johnson Foundation, said: “It is fantastic that the pilot has been so successful that Macmillan have decided to extend the project. Many older people feel vulnerable following a cancer diagnosis and are not confident or well informed enough to ask the right questions and ensure that they get the most appropriate treatment. Our advocates support them to speak out and to get the information they need to make informed decisions on their care.”

Marika Hills, Macmillan Development Manager, said: “The success of the pilot is a real testament to how important this project is. Evidence is mounting that older people are less likely to receive the treatment they need when cancer is diagnosed, despite the fact that cancer rates increase with age. No one should have face cancer alone, and with support like this in place we can help ensure no one has to.”


If you have any questions about cancer, need support or just someone to talk to, call free, Monday to Friday 9am-8pm on 0808 808 00 00 or visit www.macmillan.org.uk. For more information about the Staffordshire Peer Advocacy and Support Project please contact Kath Curley on 01782 844036 or visit www.bjf.org.uk

Leave a comment

GPs are under pressure not to refer cancer suspects to hospitals

Yesterday I re-tweeted about a letter to the Telegraph from Peter Mahaffey, a hospital specialist. He’s concerned about the report in the Telegraph that “half of GPs are too slow in spotting cancer”. Too many cancers are going undetected for too long so his response is really quite depressing. Read what he had to say below and see what you think:

SIR – You report (December 7) that “half of GPs are too slow in spotting cancer”. As a specialist who has been receiving referrals from family doctors for 20 years, I have not noticed a decline in GPs’ caring or clinical skills. What, however, is obvious to most consultants is the increasing pressure on GPs not to refer their patients to hospital.

This is the inevitable consequence of asking primary-care doctors to manage their own constrained budget allocations.

It is unacceptable for the Health Secretary to condemn a situation which leads directly from a fundamental change in NHS policy – implemented after his shadow government promised no more major NHS structural changes if elected.

In almost all other Western countries, secondary care institutions are symbols of pride with their own budgets, not completely dependent on funding from primary care.

Cancer care outcomes will decline further until GPs can make medical decisions on the merit of the case and there is a halt to the pillorying of hospitals as the cause of the NHS’s financial ills.

Peter Mahaffey FRCS
Cardington, Bedfordshire

1 Comment

December 10th is Human Rights Day

OPAAL has signed up to a Human Rights Day letter from civil society groups. Providing an opportunity for groups to join together and speak up for the importance of human rights laws for us all, this sits well with OPAAL’s commitment to advocacy and thereby to empowerment and to ensuring that the voices of older people are heard.

The letter states:

Sixty-five years since the adoption of the Universal Declaration of Human Right (UDHR), we ask political leaders to acknowledge the continued relevance of human rights both on the global stage and here at home. As leaders of civil society groups we see the vital role of human rights in ensuring a fair and healthy democracy, and helping us all to live with dignity and respect. Yet we are concerned that the value of human rights, which so many across the world look to for inspiration in setting down domestic laws, rarely feature in the current Westminster rhetoric.
This Human Rights Day, we ask political leaders to ensure that recent commitments at the United Nations Council to ‘work tirelessly for the promotion and protection of human rights, both domestically and abroad’ are made a reality. We hope that the UK will stand firm on the European Convention on Human Rights and our Human Rights Act, both inspired by the UDHR and providing vital protections to us all here at home. There is much to do to ensure these human rights have meaning for all people in the UK; our political debates should focus on making this happen rather than taking us away from the universal human rights standards long-championed by the UK.
We hope that those in positions of responsibility are able to support human rights for everyone. It’s time for the recent lambasting of the Human Rights Act here in the UK to end and a more considered approach to be taken.


Kath talks about our BIG Lottery Flagship application

Recently Kath talked about her experience of completing and submitting our Flagship application to BIG Lottery’s Silver Dreams Programme.

Listen below to her comments. (The recording lasts for two and a half minutes)

Leave a comment

The Silver Line: 0800 4 70 80 90 The free, 24 hour, confidential helpline for older people.

I would like to congratulate Esther Rantzen’s on her latest initiative to support lonely older people. Working with older people affected by cancer has opened our eyes to the fact that so many are lonely and frightened, these older people are not necessarily isolated, and can appear to have the support of many caring people. However, some older people with cancer have told us that even when they may be surrounded by family and friends nonetheless they can feel unbearably lonely struggling to cope with the impact cancer has on their lives. Unwilling to burden others, in particular family or friends with their worries and fear they try to struggle on alone. This is when our volunteer advocates can help, providing friendly, caring and sympathetic support. They listen to older people’s fears and concerns, and help to address these in practical ways aiming to remove all obstacles enabling older people to address these fears knowing they have support for as long as they need it.

Loneliness can cause serious damage, physically and mentally, as dangerous as smoking fifteen cigarettes a day, more dangerous than obesity. A survey by the Campaign to End Loneliness found that 42% of older people reported that if they need help, they do not know where to turn.

The stigma attached to admitting loneliness, the reluctance in older people to ask for help because “there are so many other people far worse off than I am” and “I don’t want to be a burden” has meant that we have ignored and neglected the deep unhappiness created by loneliness, which is afflicting so many elderly people.

Why does The Silver Line exist?
The statistics about older people and loneliness are frightening. More than half of all 75 year olds in the UK live alone and one in ten suffers “intense” loneliness but is reluctant to ask for help. In a poll conducted to mark the national launch of The Silver Line on 25 November 2013, 9 out of 10 older people told researchers that “a chat on the phone” is the most helpful solution when they feel lonely but 1 in 4 older people say they never or seldom have someone to chat to on the phone.

About the Silver Line Helpline
The Silver Line is the confidential, free helpline for older people across the UK* open every day and night of the year. Specially trained helpline staff:
• Offer information, friendship and advice
• Link callers to local groups and services
• Offer regular befriending calls
• Protect and support those who are suffering abuse and neglect
*Silver Line Scotland will be delivered by Age Scotland in partnership with The Silver Line during week days, 8am – 8pm. At all other times calls will be answered at the nation helpline HQ.

Who is it for?
The Silver Line is a helpline for older people – the Silver Generation. We have no strict age limits but most people we speak to are over 65. So, if you think it’s for you, it’s for you.

Are All Calls Free?
The Silver Line Helpline is free to callers.
Relying on charitable donations from organisations and individuals who care about the welfare and safety of older people to fund this vital new service.

Are all calls confidential?
The Silver Line is a confidential helpline.
Callers are free to express their feelings and describe their lives honestly, and can trust us to respect their privacy.
In cases of abuse or neglect, with the callers’ permission, we will involve specialist safeguarding organisations.

Silver Line Friends and Silver Circles
If callers would like to be put in touch with Silver Line Friends, they can receive a regular weekly friendship call or email. Or they may like to join a Silver Circle and take part in a regular group call on subjects that interest them.
Silver Line Friends are volunteers who have contacted The Silver Line because they enjoy talking to older people. They are vetted and trained, and work in pairs for safeguarding and support.

Silver Line Forums
For those who want to connect online with others who have similar experiences, there are forums on a wide range of subjects that you can contribute to.

If you want to learn more about The Silver Line please click here. http://www.thesilverline.org.uk/

Leave a comment

Invest in ‘well-thought-out local initiatives’ says GP

Our work in developing peer advocacy support for older people at any stage of their cancer journey has come about as a result of research by Macmillan Cancer Support into health inequalities.  Reducing health inequalities would benefit everyone.

Many GPs, including Dr David Supple in Brighton, are all too aware that ‘the UK remains blighted by a persisting health gap.’

Dr Supple wrote to The Guardian newspaper last week on the topic of opening hours for general practice surgeries. He also laments the ‘decimation of local voluntary sector support agencies.’  ‘Surely’, he asked,  ‘the large amount of funding required to increase opening hours nationally should be diverted to well-thought-out local initiatives to reduce the health divide?’

Harnessing the skills and experience of older volunteers to support their peers through the cancer journey, ensuring patients can exercise voice, choice and control and get the most from the treatment and care available to them qualifies as such an initiative in my opinion.

The support our volunteer advocates give ensures that older people need not have a more difficult experience of cancer.  People who are uncomfortable with written information can discuss their options face to face in their own time at home,  those without the confidence to voice their opinion can develop the confidence or ask their advocate to speak for them,  those unsure of their benefit entitlements will be signposted to expert help, those who are anxious will get emotional support,  those without transport will get help to find the easiest option for them, those with caring responsibilities will be able to find out about carer support.

When thinking about tackling health inequalities we sometimes focus firstly on public health initiatives and lifestyle campaigns but the work we are doing also contributes to raising life expectancy and increasing the number of years lived in  good health and with quality of life.

Kathleen Gillett, Dorset Cancer Advocacy

Leave a comment

AgeUK Gateshead supports bid for Flagship £1 million.

The importance of advocacy in helping older people cope with cancer: In support of the OPAAL led proposal for funding to roll out peer advocacy across the country.

Here at Age UK Gateshead we have been privileged to be part of the national pilot project, led by OPAAL and developed in partnership with other local provider sites across the country, developing peer advocacy support for older people whose lives have been affected by cancer.

The pilot has provided so much rich information on what works, and all that learning has been turned into a strong proposal to roll the work out, enabling more local providers to deliver this important service. The strength of the model in my view is that it provides a solid shared framework and set of quality standards, whilst enabling local VCS providers with local networks and knowledge to respond to local need. The diagnosis of cancer is so devastating for older people, and we have proved that advocacy can make such a difference to their experience of the illness and the support services they are able to access.

At Age UK Gateshead we have unfortunately faced challenges in delivering the pilot at times, primarily due to the local impact of statutory sector restructuring this year, with the loss of many of our contacts within the local authority and PCT/ CCG. We have been supported by OPAAL in developing a new approach to our own local pilot as we recognised the original model of delivery was not quite right for Gateshead. We have worked hard to develop new networks within the health community. We are now on track with a new approach to delivering our cancer advocacy which anchors it more closely to our wider range of services for older people, especially our Information and Advice team.

We are now beginning to develop good relationships with the new CCG team. We are leading on bringing CEOs in the voluntary sector together to improve communications between the new statutory structures and our sector, developing a Single Point of Contact approach which dovetails with existing engagement structures.

I am so grateful to our advocacy coordinator and other members of my management team, and for the ongoing commitment from peer advocate volunteers and local cancer champions who have all enabled us to deliver this project in spite of the difficulties we have faced.

Here’s to a successful national rollout of this valuable new initiative!

Sharon Stuart
Chief Executive Officer Age UK Gateshead.


Lung Cancer Awareness Month – November 2013

November is Lung Cancer Awareness Month.  Lung cancer is the most common cancer worldwide.  With the disease claiming more than 33,500 lives in the UK every year and a shockingly short six months average time between diagnosis and death it is crucial that awareness of this cancer is raised.

Organisations such as The Roy Castle Lung Cancer Foundation strive to raise awareness of this disease.  Awareness leads to greater chance of early diagnosis.  The earlier the diagnosis, the better the chance is of swift lung cancer treatment and the ability to beat the cancer. So help your family and friends realise that smoking, passive smoking and exposure to certain chemicals are risk factors that should be eliminated or reduced.

Union jack

Keep Calm

Keep Calm

How can we do this?  Staying active is the main way!  Going to the gym, dancing, or doing a sport you enjoy will help strengthen your muscles. This will expand your lungs and ensure the blood that is pumped around the body is better able to provide the oxygen the body needs!

You should also stay away from smoking, keep your rooms well ventilated and get any persistent coughs that might arise checked with your doctor.

This is particularly relevant in Stoke on Trent as there is a higher incidence of lung cancer in the population compared to the national average.

Kath Curley

Project Co-ordinator Beth Johnson Foundation

Leave a comment

It’s the craze sweeping the internet! It’s okay to get caught up in the cog, post a really exciting blog! National Blog Posting Month November 2013

National Blog Posting Month celebrates all the weird and wonderful blogs out there!  Moreover, it encourages YOU to start your own blog if you don’t have one yet.

I know that a lot of the time if I’m researching a topic and can’t find anything by doing a main search on Google I move onto the ‘Blogs’ tab. For example I loved all the costumes in a television programme called ‘The Hour’.  But online I realised none of the main newspapers or magazine sites had picked up on this topic.  However, when I searched under blogs, there were a few that had written about exactly what I was looking for!

While some people opt for a monthly blog, others prefer to write daily or weekly.   It varies and I know while I might write a couple one week, I might not write another until the next month!



However, this November you are asked to write a blog every day for the whole month.   Sound overwhelming?   Each post doesn’t have to be huge.   It can be a collection of small posts if you want!

The fact is you can find a blog on pretty much any topic nowadays. Fashion, sports, food, you name it! And technology is so fast-paced these days.   You can understand why some are now arguing that bloggers could be journalists of the future!

One American journalist even left his job at FOX and NBC to report via his blog.   The result?   He’s now one of the most successful bloggers around! I’ve also read about young people who were recognised on their blogs to the extent that they have now made a business out of it.

Are you keen to start blogging?  But stuck for ideas?  Why not write something for us about your experience of cancer? We’d be really keen to hear what you have to say. Email marie.mcwilliams@yahoo.co.uk  with your ideas and we’ll go from there. Alternatively, for more inspiration, why not go to the National Blog Posting Month blog and then it’s over to you!

Happy Blogging!

Kath Curley, Project Co-ordinator, Beth Johnson Foundation