How I (Try to) Avoid Advocacy Burnout

One of the many benefits of working with health professionals, in this case Dr Charles Campion-Smith who sits on our National Health Professionals Board, is that they often so freely share valuable information. Charles has introduced me to a smart phone (iphone and Android) app that may well be useful to advocates and patients.

The Cancer.net app is from the US but parts are very relevant to UK.

In particular the ‘Questions’ tab takes you to a page where someone can write questions (or select a number of provided ones) they want to ask – typically in a consultation.

The app then allows the anwsers to be recorded on the phone.

Audio taping consultations has been used successfully for some time but this is much less cumbersome and preparing questions together might be useful to advocate and patient.

I explored this app and came across a very interesting article written by Anita Mitchell which I know will be of great interest to our own advocates. I have now secured the relevant permissions to reprint this article in full and would like to thank Anita and the American Society of Clinical Oncology for allowing us to share this article.

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Anita Mitchell was diagnosed with stage IV colon cancer in 2005. She is the cofounder of the Colon Cancer Stars of Washington State.

My advocacy story
I had not planned to become a colon cancer advocate. It is something that I just became. I suppose after everything that happened to me, I had to find meaning and purpose in my diagnosis.
I fell into advocacy in 2005, when I was diagnosed with stage IV colon cancer after just turning 41. The fact that my primary care doctor disregarded my symptoms and missed my diagnosis fueled my passion to become an advocate for prevention and a voice for those diagnosed at a young age. I was the third parent at my children’s school to be diagnosed before turning 50, which is the recommended screening age for colon cancer. So, I began educating families about screening and the symptoms of colon cancer. One of the first ways I did this was by starting an awareness day at my children’s school—I called it Dress in Blue Day. Years later, it became a national event!
I wanted to spread the word. After I learned how preventable my case was, I didn’t want this to happen to anyone else! But there were other things going on in my life as well. I was fighting for my life, trying to raise my 3 kids, and dealing with a crumbling marriage. It was a lot to balance.
Still, I started getting involved with some local cancer survivor programs. Then I began volunteering for LIVESTRONG, American Cancer Society, Colon Cancer Alliance, Fight Colorectal Cancer, and Gilda’s Club. Soon after, I found myself on committees for my hospital and state. I even posed for the Colondar for the Colon Club!Eventually, I started my own nonprofit, Colon Cancer Stars of Washington State, with the help of my Washington State Colon Cancer Task Force.
Advocacy is needed to give patients and survivors a voice when cancer becomes faceless. I clearly remember sitting at the ASCO Annual Meeting one year as a patient advocate. I was still on chemo, listening to the doctors talk about how a drug gives you maybe 1 extra month of life, wondering if the cost was worth it. I wanted to jump up and scream, “Of course it is!”
In the end, I got very lucky and was out of treatment after only 2 years. Even though I survived, I still lived from scan to scan and needed to find meaning in my life apart from my familly.
Handling advocacy burnout

When you are an advocate, you are smacked in the face with limited time and tons of things you want to do and achieve. You have to quickly learn to prioritize what is important. If you don’t, you can get burned out on advocacy.Here are some of the strategies I use to try to keep burnout away.

• Learning to say no. I quickly learned I would have to become comfortable saying no to different requests. This was not always an easy thing for me to do. I realized that I had to believe what I did was worth my energy and my time.
• Keeping balance. This is very hard for me, so I like to think of my life as a pie, and cancer is a slice of it. Sometimes I have a few slices, but if it becomes too many, I know I need to take a break. Cancer affects the whole family, so I had to be mindful that sometimes my children did not want to hear about colon cancer advocacy. For them, it was enough that they had almost lost their mother to it!
• Find support. I have learned to reach out for support from close friends who are cancer advocates. They understand the sadness and frustration of losing people to the disease because of the slow pace of science, politics, or lack of funding.
• Step away when you need it. Like they say during the airplane safety messages, “Put the oxygen mask on yourself first before helping others.” I have found this to be the case in cancer advocacy, especially when it comes to online help. These groups can be overwhelming at times, and sometimes you need to turn off the computer for a while. So when I need to, I step away for a bit and I do not let myself feel guilty about it.
• Seek what is meaningful and joyful in your advocacy. I try to slow down and analyze what brings me joy and a sense of meaning. I look for signs that I am going in the right direction. Sometimes it is a simple note saying, “Thank you, I got screened after I read your story in the paper” or “I slept all through the night for the first time since my diagnosis after I talked to you.” I once had someone say she kept my story in her pocket. You never really know how many people your story will touch or even save, but it is many more than you will ever know. So I choose to carry on!

Anita Mitchell Voices on Cancer

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What a coincidence!

Our colleagues and programme partners Staffs & Wolves Cancer Advocacy project have just published the post below on their own blog and Kath Curley project manager has kindly agreed to share it with us:

At last week’s Cancer Older People and Advocacy Programme Project Management Group Meeting Kathleen Gillett, from Dorset Macmillan Advocacy,  gave a presentation on Macmillan’s Recovery Package.

The Recovery Package is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

The Recovery Package is made up of the following elements:

• A Holistic Needs Assessment (HNA) and care planning.
• A Treatment Summary completed at the end of each acute treatment phase 
• A Cancer Care Review completed by the GP or practice nurse to discuss the person’s needs.
• An education and support event such as Health and Well-being Clinics.

Today, Collette Cooper and I met with Sarah Gorton, Macmillan Cancer Survivorship Project Manager, based at Royal Stoke Hospital, who has taken up a 2 year Macmillan funded project. Sarah is working with the CNSs, across Royal Stoke and County Hospitals, for 4 cancer sites:

1. Head and Neck
2. Brain
3. Primary Bone
4. Gynaecological  

to implement an electronic Holistic Needs Assessment (eHNA) within these clinics as an integral part of the Recovery Package.

We discussed with Sarah where advocacy fits within the Package and that Advocates compliment and support the work the CNSs are doing. We hope this will lead to greater partnership and collaborative working with the health professionals.

Good luck Sarah!

Kath Curley, Staffs and Wolves Cancer Advocacy and Support Project Manager.

Pat Wallis – My Cancer Journey and How It Led Me to Volunteer For SPAC

I was diagnosed with breast cancer 9 years ago and underwent lumpectomy, chemotherapy and radiotherapy.

I cannot fault the treatment I received from Southport Hospital, in association with Clatterbridge. The breast cancer specialist nurses were wonderful and very supportive and informative. However the health professionals can only give you so much help, you need the support off others to help you cope.

Entering the world of cancer and going through the treatment pathway you experience a roller coaster ride of emotions. Initially there is the shock of diagnosis, with questions such as how advanced is it? Has it spread? These questions can take time to answer as there are tests to undergo. It is hard to explain to someone how stressful it is waiting for the results and to find out what treatment you will receive. You certainly need the help of someone to go through this with you. At appointments you may hear what is said but not take it in and thus having someone else there, when you see the cancer specialist, can make a significant difference. Once you know the treatment pathway you are going to receive there are many other concerns. If you are going to have chemotherapy you feel very apprehensive. Much of what you hear about chemotherapy tells you how awful it is. You wonder how ill will I feel, am I going to be very sick, will I be able to go out, what will it be like without my hair, will I suit my wig.

Hospitals can be very daunting places, even if you are confident and not afraid. I remember waiting in a cubicle with an unflattering gown on wondering if I had been forgotten. Once you are on treatment you may still have questions to ask the cancer specialist. It helped me to make a list and have someone accompany me to the specialist or my treatment.

Pat Wallis

If you are still working there could be financial concerns. You may be off work a long time and may need support in identifying your rights re sick pay and any benefit entitlement. I was fortunate in that the company I worked for paid me full pay throughout but this is not the case for everyone.

When you are on treatment you feel secure, as you are seeing health professionals regularly. However once you have finished treatment you can feel as though you are alone and have to start adapting to life again. However you still have the stress of check-ups and learning to live as a cancer survivor, which can be extremely frightening. Another hurdle you may have to overcome, if you are still working, is your phased back to work and you may need help to explain things to your employer.

My own experience of undergoing cancer treatment was very positive and as I have stated I cannot fault the treatment I received. I tolerated chemotherapy well and it was not an awful experience for me, I only missed going out for one day. When I lost my hair there were some benefits to wearing a wig, no bad hair days and I saved a fortune in shampoo. I was lucky that I had no financial problems. Throughout my treatment and after I was extremely lucky to have a supportive network of family and friends around me. However I recognised that there would be some people without family or friends to support them through the journey.

I decided to volunteer for the Cancer Older People and Advocacy project with Sefton Pensioners’ Advocacy Centre as I felt I could use my experience to support others. I recognised that my experience enabled me to support people, with cancer, from a standpoint of understanding the issues and concerns they were experiencing. I know that I could not have managed without the support of my family and friends and therefore understand how important it is to have someone else on your side. Having recognised the difference that support made to me I wanted to be that person for others. I enjoy what I do and the difference it makes. Given the choice to volunteer again I would still make the same decision and would encourage others to think about the positive impact they can have by offering their time to volunteer.

Pat Wallis
Peer Volunteer Advocate
Sefton Pensioners’ Advocacy Centre (SPAC)

National Cancer Survivors Day: June 1st

Sunday 1st June is National Cancer Survivors Day. Initially celebrated in the USA it is fast becoming a worldwide day to “demonstrate that life after cancer diagnosis can be a reality”

Cancer survivors across the globe will unite to show the world what life after cancer looks like. This unique celebration will mark the 27^th annual National Cancer Survivors Day. Thousands of people in hundreds of communities across the world will hold celebrations on this day to honour cancer survivors and to show that there is life after a cancer diagnosis – and it’s something to celebrate.

National Cancer Survivors Day is an annual worldwide Celebration of Life. It is the one day each year that we come together to honour everyone who is living with a history of cancer. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life,” according to the National Cancer Survivors Day Foundation, administrator for the celebration.

The day itself provides an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and recognize the healthcare providers, family, and friends who have supported them along the way. It is a day for cancer survivors to stand together and show the world what life after cancer looks like.

“Sometimes people have very negative ideas of what life after cancer looks like,” says Foundation spokesperson, Laura Shipp. “But the reality is that more people are living longer and better quality lives after cancer than ever before. These survivors are showing us that life after cancer can be meaningful, exciting, and filled with joy.

“National Cancer Survivors Day is an opportunity for cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. It may not be the same as before cancer, but it can be beautiful, rewarding, and sometimes even better than before. And that’s something to celebrate.”

More information can be found on the National Cancer Survivors Day website, click here

Our Cancer, Older People and Advocacy project celebrates cancer survivorship and applauds our many peer volunteer advocates who are themselves cancer survivors. We often hear from our volunteers that it’s the very fact they’ve experienced and lived with cancer that drives them to volunteer to support their peers. Let’s all celebrate on June 1st.

Relay for Life

You may have noticed a comment published after we issued a post about the National Cancer Survivorship Initiative. The person who commented was Pam Bentley and we are happy to help raise awareness about the Relay for Life that Pam is involved in. This is Pam’s original message:

I had breast cancer 26 years ago and survived. I have recently completed 6 months chemotherapy and 4 weeks of radiotherapy, as breast cancer has presented in the second breast.

Since my first diagnosis I have worked tirelessly, raising funds for cancer research, and am currently Survivor Co-ordinator for Bournemouth & East Dorset Relay for Life, being organised by Cancer Research U.K. to be held in Ferndown, for the 7th year in Ferndown on 12th and 13th July, 2014. Details of Relay, as opposed to Race for Life can be found here.

My reason for contacting you is to invite as many cancer survivors, living in the area along to our event.

Relay for Life

Survivors are NOT asked to fundraise, they are asked to celebrate their survival. To this end survivors take part in the opening lap of honour, and are then invited to a celebratory party, with entertainment (all donated). This takes place as the actual teams begin their 24 hour Relay on Saturday 12th July on the field behind Ferndown Leisure Centre. As mentioned previously full details can be found on our web site.

I have been organising this part of the event since its induction, and all the survivors have enjoyed the occasion, feeling uplifted at seeing so many young people, inspired to fundraise for medical research.

I do hope you are able to publicise this event on our behalf.

Many thanks, Pam Bentley, Survivor Co-ordinator, Bournemouth & East Dorset Relay for Life.

P.S. We are a small, entirely voluntary committee.

 

We’re happy to support Relay for Life on our blog. Good Luck!

National Cancer Survivorship Initiative

There are currently 1.8 million people in England living with and beyond cancer, and 2 million across the UK as a whole. The aim of the National Cancer Survivorship Initiative (NCSI) is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

What is the National Cancer Survivorship Initiative?

The National Cancer Survivorship Initiative (NCSI) is a partnership between NHS England and Macmillan Cancer Support, co chaired by Sean Duffy, National Clinical Director for Cancer, and Ciarán Devane, Chief Executive of Macmillan Cancer Support.

Originating from the Cancer Reform Strategy (DH 2007), the NCSI from 2008 – March 2013 was a partnership between Department of Health and Macmillan, with great support from NHS Improvement.

Our aim is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

NCSI recently posted a great video which explains what they’re about. Have a look and see what you think:

130,000 people diagnosed at 65 or over survive cancer for at least a decade

With the right treatment, over 65s can survive for many years after cancer – yet UK survival rates in older people are among worst in Europe

More than 130,000 people in the UK have survived for at least 10 years after being diagnosed with cancer at 65 or over, according to new research by Macmillan Cancer Support and the National Cancer Intelligence Network (NCIN).

This figure shows that, with the right care and treatment, over-65s in the UK can live for many years after cancer. However, if UK survival rates in this age group were not so poor this number would be even higher. Macmillan believes too many older patients in the UK are being assessed on their age alone and not their overall fitness.

The research, which is the first of its kind, also reveals that there are more than 8,000 people alive today who have survived for at least 10 years after being diagnosed at 80 or over.

There are almost twice as many long-term (10-20 years) female survivors who were diagnosed at 80 or over as there are male (5,481 compared with 2,995).

Gerald Shenton, 78, from Staffordshire says:

‘I was first diagnosed with renal cell carcinoma in 2000, and I am still here 13 years later, although I’ve suffered from every side effect in the book. I never really had any aftercare because I have always been treated as end stage. I was turned down for a possible treatment twice, being told unofficially that it was because of my age, although I did finally get some good emotional support through my hospital.’

A recent international study showed that for many common cancers (such as prostate, female breast, lung, stomach, ovary, kidney, non-Hodgkin lymphoma) the UK and Ireland have a lower five-year survival rate than the rest of Europe, and the gap is generally greatest for patients over 75. For example, the survival rate for lung cancer in the UK and Ireland is 9% worse than the European average for adults aged under 45, but 44% worse for those aged 75 or over.

Ciarán Devane, Chief Executive at Macmillan Cancer Support, says:

‘It’s wrong to write off older people as too old for treatment. With a proper assessment and appropriate treatment, our research shows that many older cancer patients can live for a long time and can even be cured.

‘While it’s good news that so many older people are benefitting from treatment, many thousands more could live longer if our survival rates for over 65s matched those in comparable countries.

‘The barriers to getting treatment – which include age discrimination and inadequate assessment methods – must be tackled now so more older people can survive cancer and live for many years.’

Dr Mick Peake, Clinical Lead of the National Cancer Intelligence Network, says:

‘It is vital that all patients receive the best and most effective treatment based on the nature of their cancer and their fitness for treatment and that chronological age alone is not the deciding factor. We know that cancer survival rates in older patients in many other countries are better than in the UK and ensuring optimal treatment at all ages is the way of tackling this issue.’

Macmillan Cancer Support is calling on all health providers in England to:

1. Adopt assessment methods that test a patient’s overall physical and mental wellbeing to ensure treatment decisions aren’t based on age alone.

2. Give health professionals the time and resources to complete specialist training in elderly care to ensure services are accessible and provide the best quality care irrespective of age.

3. Establish links with the voluntary sector, social services and teams specialising in dementia, falls and continence and address any medical, social, emotional or financial issues that may be preventing an older patient taking up treatment or that are impacting on their quality of life either during or after treatment.

No one should face cancer alone.

Patients deemed too old for treatment

Great news: “Tens of thousands of pensioners diagnosed with cancer have survived for at least a decade.” Bad news: “some patients are being deemed as too old for treatment and are not assessed on their overall fitness.”

A recent article in the Guardian points to research from Macmillan Cancer Support and the National Cancer Intelligence Network (NCIN) which found that more than 130,000 people in the UK have survived for at least 10 years after being diagnosed with cancer at the age of 65 or above. That number included more than 8,000 patients who were diagnosed at the age of 80 and over. But despite the large number of older people who are “long-term” survivors of the disease, Macmillan said many patients in the UK are being denied treatment because they are deemed to be too old. It said that cancer survival rates in this age group are “poor”.

Macmillan pointed out that survival rates in the UK compared badly with those on the continent and warned of what it saw as a worrying trend in the way people are treated.

For many common cancers – including prostate, breast, lung, stomach, ovarian and kidney cancers – the UK and Ireland have a lower five-year survival rate than the rest of Europe.

Age discrimination is something we’re constantly battling against but generally it’s an inconvenience and we’ve got time to do something about it. Being diagnosed with cancer isn’t always the death sentence we think it is but for some older cancer patients it seems it may be since they’re being denied the possibility of curative treatments.

This has to stop NOW!

Our cancer advocacy project, in partnership with Macmillan Cancer Support, is working hard to support older people affected by cancer. Our trained advocates are helping ensure that older people can get past any barriers which prevent access to helpful and life-prolonging treatments.

Health professionals must be supported to realise we’re all different regardless of our age. We all have different physical attributes and different attitudes to life and death. Our age doesn’t suddenly make us homogeneous; we continue to be different throughout our lives and we should be treated as the individuals we are.

Marie McWilliams

OPAAL

Treatment choices can be bewildering

Mr Charles Carter, Consultant Urologist at Royal Bournemouth and Poole Hospitals,  said that while most men like to have a choice of treatments for prostate cancer ‘after all it’s their body’, some find the choices ‘bewildering’.  He described how a multidisciplinary team will discuss each case to identify all the options of benefit.  Following the consultation where a ‘steer’ can be given the patient can discuss his own situation further with the nurse specialist, review their clinic letter and weigh up the printed information from the booklets provided.  Mr Carter noted however that many decisions are affected by people’s knowledge of the outcomes that their friends have had from various courses of action.

Graham Willetts is pictured with Sue Higgins Director of Nursing at Lewis-Manning.

Mr Carter was speaking as part of the Autumn series of educational seminars at Lewis-Manning Hospice in Poole.  Graham Willetts, Chair of Dorset Cancer Champions Board, said afterwards that the talk illustrated how the advocacy challenge is particularly acute with prostate cancer in relation to helping people make the right choices about screening, surveillance and treatment. Lewis-Manning Hospice offers free specialist palliative nursing care to local people living with cancer and other life-limiting illnesses in a brand new facility with stunning views of Poole Harbour. One aspect of the organisation’s stated mission is ‘Raising awareness of what living with a life-limiting illness means, through education and provision of information to the patient, their carers and the community as a whole.’ The seminars are aimed at healthcare professionals, social workers, students and those interested in the care of those with long term life-limiting illnesses and the survivorship agenda.

Kathleen Gillett, Dorset Cancer Advocacy

Helping the growing numbers of cancer survivors to help themselves and to live well

In response to the announcement by Macmillan Cancer Support that the proportion of people surviving cancer has doubled since 1992 Radio 4’s World at One on Friday 7 June considered what support is available for them.

Increasing numbers of people are living with the effects of having had tough cancer treatments and although they are cured still have the uncertainty that their cancer may come back.  Those with a cancer that has come back may live with a chronic condition and the impact of on and off treatment programmes.

The programme asked

How can the system cope with the growing numbers?

How should people be followed up?

Who should provide follow up?

What type of follow up is best in an acute hospital setting and what in a community setting?

Laura Lee, Chief Executive of Maggie’s was invited to comment and explained how Maggie’s Centres aim to provide comprehensive support to people affected by cancer including family, friends and carers. The centres offer ‘a pioneering approach that integrates professional help with a community of support in thoughtfully designed centres, a combination that is proving highly effective in alleviating the emotional distress and practical difficulties that cancer brings.’

But with only 14 such centres in the UK to date Ms Lee sees the solution for the majority in self help:

‘There is’, she said, ‘a way of educating people with cancer about what they can do to help themselves, about how they can play an active role in their follow up, about how they can use the NHS system to best effect. There are a lot of efficiencies that we can put into the system by better educating and supporting family and friends of those going through a cancer diagnosis.’ You can follow @MaggiesCentres on Twitter.

I believe that one to one independent advocacy support can help to achieve this goal alongside such centres and the traditional support groups.  Advocacy seeks to empower people to become better informed, to identify what living well means to them, to have the confidence to speak up for themselves, and to tap into the resources of their local community for social support.  The Cancer, Older people and Advocacy project will ensure that older people are active participants in their follow up.