Transforming support for young people living with cancer
ANNUAL REPORT 2014
CanTeen Australia Annual Report 2014 | Page 2
At CanTeen, we believe that no young person should have to face cancer alone.
About Us CanTeen supports young people when cancer turns their world upside down and helps them cope with the physical, emotional and practical impact of living with cancer.
We do this through hospital and community based specialist services that offer medical care, information and psychosocial support face to face, by telephone and online.
We’re here for 12-24 year olds at every stage of their cancer journey, whether they’re dealing with:
Our peer support programs are renowned for their powerful impact on the young people who attend and share their cancer stories, support each other and have fun.
• Having cancer themselves. • A parent, brother or sister being diagnosed with cancer. • The death of a parent, brother or sister. We understand that cancer affects everything, but that it also affects everyone differently. That’s why CanTeen’s expert staff offer individually tailored support to help every young person deal with the impact that cancer is having on their life.
The CanTeen Research and Evaluation team provides direction on what works and monitors our programs and services so that we continually strive to do better at meeting the needs of those young people affected by the dramatic impact of a cancer diagnosis. We get how tough it is to face cancer, because we were set up by young cancer patients in 1985 and still have young people affected by cancer guiding CanTeen at every level.
For more information or to get support, visit canteen.org.au, call us on 1800 226 833 or email support@canteen.org.au. CanTeen Australia Annual Report 2014 | Page 3
23,000
young people have to face the challenge of cancer every year – whether it’s their own diagnosis or that of their parent, brother or sister. That’s around 63 young people every day.
More than half of young people affected by cancer experience high levels of psychological distress. Around half of the cancer types that affect young people still have 5-year survival rates below 77%.
In comparison to their peers, young people who survive cancer are twice as likely to develop cardiovascular disease or have a disability later in life.
Cancer is responsible for one in ten deaths among young people.
5 4 3 2
77%
1
Young people who have a parent with cancer are
6 times
more likely to be at risk of mental health issues than their peers.
Almost a quarter of young cancer survivors continue to face mental health issues such as depression, anxiety or post-traumatic stress disorder years after their treatment has finished.
Contents Message from the CEO and the President........................ 6 Launching CanTeen’s online support platform............. 10 CanTeen counselling services... 12 First year of individual support.. 14 Youth Cancer Services.............. 15 Peer support.............................. 18 Research and Evaluation........... 20 Information................................ 24 Developing CanTeen’s young leaders............................ 26 The road ahead......................... 28 Financial Summary.................... 30 Thank you to our supporters..... 32 Meet the Board.......................... 36
Contact Us canteen.org.au T 1800 226 833
E info@canteen.org.au
facebook.com/CanTeenAus twitter.com/CanTeenAus
Message from the CEO Reflecting on CanTeen’s 29th year of providing life-changing support for young people affected by cancer, I am proud of what we have achieved and excited about the new initiatives we are delivering. The young people that I meet through CanTeen are truly extraordinary. I have worked with young people in different situations over the past 30 years, however these young people do have an insight about life and death that is particularly different, so that invariably they are wise beyond their years. However that insight didn’t come without a cost and each of them tells me how important the support they got through CanTeen has been in helping them through a very tough journey. In particular they tell me about the difference CanTeen makes to their ability to cope with what they are going through – and how we have given them a renewed sense of hope and an increased capacity to deal with what life throws at them. In the past year, we have run nearly 200 of our renowned peer support programs where young people can meet and connect with others in similar situations, share their cancer experiences and have a lot of fun as well. In order to reach more young people more of the time, I am especially pleased that we have now launched a new online platform which will transform the way in which CanTeen supports young people living with cancer. This is a place for young people to come together online for vital peer support, as well as information about cancer and the journey they are going through. Staffed seven days a week with professional counsellors, we can now help young Australians no matter where they live, ensuring that no young person living with cancer need ever feel alone. Similarly, we’re rapidly increasing the number of young cancer patients receiving best practice hospital care through the Youth Cancer Services, the only places in Australia providing specialist treatment and support. All of CanTeen’s work is underpinned by high quality research and tailored to each young person’s individual needs. Ultimately, every initiative shares the same aim - to reduce the distress and emotional challenges faced by young people living with cancer.
Peter Orchard, CEO
Message from the President CanTeen has truly had the most amazing year. As National President, I have had the privilege to witness it all and have heard many of our success stories from staff, Members, volunteers and supporters. In what is an incredibly exciting development for CanTeen, the new online support platform is now live! It brings CanTeen’s very special combination of peer and professional support into a single online space in a way that hasn’t been done anywhere else in the world before. It’s a space to find information, connect with others going through a similar experience and access professional counselling seven days a week. Along with other CanTeen Members, I helped to develop the website and I love how it’s personalised to every young person’s specific cancer journey and that you can jump online and instantly have someone to speak to. Elsewhere in CanTeen, the Youth Cancer Services have continued to thrive and we are seeing many more patients supported through age appropriate care that include psychosocial, educational and social supports. Both the Youth Cancer Services and online support platform would not be possible without generous funding from the Australian Government. True to its mission of empowering young people, CanTeen is revamping its leadership pathways and teachings in a new collaborative partnership with Deloitte. The partnership is in its early stages and the mentoring program will begin to rollout at the end of 2014, however the hype it has generated amongst the Member leaders of CanTeen has left us sitting on the edge of our seats! It really is a very exciting time and I am thrilled to see CanTeen continue to grow into the best possible version of itself.
Ali Duncan, National President and Bereaved Offspring Member
MY STORY I was 13 when my Mum, Jule, was diagnosed with inoperable lung cancer so I guess you can say my whole adolescence has been defined by cancer. When I joined CanTeen as a young, energetic and loud teenager, Mum was going through her first round of chemotherapy. It was a success and I felt like we had survived and that things were starting to get back to normal. It wasn’t the case. Mum’s cancer returned and her second round of chemo was unsuccessful. They told us the cancer had spread to her brain and that she only had about 3 months to live. Mum was pretty tough and was determined to see Christmas so she held on for 5 more months. Mum died in
February 2006, two weeks in to my Year 10 school certificate year. The only constant throughout this time was the support CanTeen provided me. When Mum died, some of my CanTeen friends became like my family. CanTeen has truly helped me deal with losing Mum while still getting on with life. This year I am celebrating my 10th year as a Member of CanTeen and I’m glad to say that I still feel as proud and blessed to be a part of the organisation as I did on my first day.
Watch Ali speak to ABC News Breakfast about the online support platform at youtube.com/CanTeenAustralia CanTeen Australia Annual Report 2014 | Page 7
Our Achievements in 2013/14
10,321
books provided to guide young people through the challenges of living with cancer.
1,538
young cancer patients supported through the specialist hospital based Youth Cancer Services.
World first online support platform launched.
1,394
counselling sessions conducted with young people affected by cancer.
1,215
young people given much needed peer support across 192 CanTeen programs.
CanTeen Australia Annual Report 2014 | Page 8
Matt Age 17 MY STORY I was just your everyday teenager getting on with life as normal in Year 10 at high school, hanging out with friends and playing sport. Dad was 45, he was an electrician by trade, a police officer and an army reservist. He was my best mate, we would talk about anything and everything. In November 2011 Dad was having a shave when he found an unusual lump in his neck. It turned out to be cancer of the lymph nodes. Dad started his first cycle of chemo and it was hard seeing him in hospital as we weren’t used to seeing him unable to help himself. It was a very tough time for my family, trying to cope with not having Dad around as much and the uncertainty of what was going to happen. Dad’s treatment continued throughout 2012 and things started looking up. We got some good news that the chemo had erased the cancer, but it didn’t last long. A few weeks later we found out that the cancer had come back more aggressively and was spreading throughout his body.
I joined CanTeen when Dad was first diagnosed – it’s a place where you can go and be yourself without wearing the mask you put on for everyday life. If CanTeen wasn’t around, I’d be lost without the support of people my age and their understanding of what I’m going through. It’s just not the same with school mates or family. They mean well, but they don’t really know what you’re going through or what you’ve been through. They don’t know how to react or how to discuss things like that with you. With Dad gone, I was more empty than anything. I didn’t feel many emotions until I visited the CanTeen counsellor. That’s another big help from CanTeen. The counselling service is a healthy space where you can share and have time away from everything. That helped me to let go of my emotions and get some release, without being judged by anyone. CanTeen’s not all a sob story. We don’t go there and sit around and cry. We do have time for reflection, but it’s also all about having fun and hanging out with your mates.
Shortly after Australia Day 2013 I was called out of school to go to the hospital where they told us Dad had two weeks to live. He passed away the next morning.
Watch more of Matt’s story at youtube.com/CanTeenAustralia CanTeen Australia Annual Report 2014 | Page 9
Launching CanTeen’s online support platform
FACT:
Every year, another 23,000 young Australians have to face the challenge of cancer.
In order to help more young people deal with the impact that cancer has on their life, CanTeen launched a new online support platform for young people living with cancer in 2014. CanTeen received funding from the Australian Government, Department of Health to develop the platform, which will transform the way CanTeen supports young people affected by cancer. It includes: • An online community where young people can connect with each other, share experiences through video stories, written stories, forums and blogs, and generally support one another. • Access to professional counsellors seven days a week, over extended hours. • Information about cancer – the new platform offers the most up-to-date and age-appropriate information available about cancer and its impacts on young people’s health and wellbeing.
Providing peer and professional – using online and mobile technology ensures that young people can get the support they need in an environment where they both spend significant time and feel comfortable. In turn, this helps ensure that a much greater proportion of the 23,000 young people affected by cancer each year get the help they need throughout their cancer journey. CanTeen’s vision is that the new online platform will ultimately provide the primary site where all young people living with cancer can find information, connect with each other, get support and access professional counselling.
Key Achievement: Launching a world first online platform that provides support for young people living with cancer seven days a week, no matter where they live.
CanTeen Australia Annual Report 2014 | Page 10
CanTeen’s Online Support Platform was officially launched by Senator the Hon Scott Ryan, Parliamentary Secretary to the Minister for Education, on behalf of the Hon Peter Dutton, Minister for Health, on Friday 17th October 2014 at The Mint, Sydney.
Watch our launch video at youtube.com/CanTeenAustralia
CanTeen Counselling Services
FACT:
Young people affected by cancer are five to six times more likely to be at high risk of mental health issues like anxiety or depression than their peers. Young people living with cancer are at much higher risk of mental health issues like anxiety or depression than their peers. That’s because a cancer diagnosis turns a young person’s life upside down which can leave them feeling vulnerable, frightened, confused and alone. CanTeen Counselling Services are confidential and completely free. Speaking to a specially trained CanTeen counsellor gives young people the chance to discuss their thoughts and feelings while also learning skills and strategies to help them through their cancer experience. The services began as a pilot program for Offspring Members (young people who have a parent with cancer), but are now available to all young people affected by cancer. During 2013/14, CanTeen provided 1,394 counselling sessions either face to face, by phone or email.
An evaluation of the counselling services, as well as our ongoing monitoring, tells us that young people who use the services are less sad and anxious, feel more hopeful and that they’re better equipped to deal with their situation. CanTeen Counselling Services are also available online, by phone or email seven days a week, over extended hours, as part of our new online support platform (see previous page). CanTeen Counselling Services are supported by generous funding from nib foundation and the Australian Government through the Department of Health.
Key Achievement: Providing almost 1,400 counselling sessions to young people living with cancer.
CanTeen Australia Annual Report 2014 | Page 12
Molly Age 17 MY STORY I was officially diagnosed with Hodgkins Lymphoma when I was 16 on November 19, 2013. Leading up to my diagnosis I was feeling really run down and not my usual self, but I put that down to being stressed with exams and being really busy with friends. When I was diagnosed, it didn’t seem real. I knew it was a big deal, but I didn’t really know why. I assumed I’d still have all my friends, and I guess in all honesty I knew I was going to lose my hair and that’s what frightened me the most. During treatment, there was no shortage of support and ‘friends’ and I grew quite comfortable having people visit me in hospital, but all I really wanted was to go back to ‘normal’. I was rapidly gaining weight due to the steroids affecting my body and was finding it hard to remember the day of the week, let alone topic work for Year 12. My school came to the decision that it would probably be easier for me to take a year off from study, and my parents and I agreed. It was upsetting as I am quite smart, but knowing I was never going to have a formal, a graduation or even a uni entrance rank was really distressing. Towards the end of treatment I couldn’t recognise myself. I was over 20kgs heavier, bald and as pale as they come. I had lost a lot of friends as the school term resumed from summer
break. I don’t think anyone deliberately left, we just grew apart as I was in a different point of my life, but I still fell into a deep funk where I was constantly angry and upset at everything, taking every opportunity to blame me or the people around me for the situation I was in. It was then that I contacted CanTeen for counselling. Hiromi my counsellor has been great for me to talk to whenever I’m feeling down. With her help, she has made me realise there is most definitely life after cancer, and it’s just a matter of finding your ‘new normal’. I have since, with the motivation and help and the compassion from Hiromi, realised that I can achieve all I set my mind to and more. I’m aiming to get into uni next year, I’m slowly losing all the weight I gained and I have an amazing group of friends who I would not change for the world. She’s given me coping skills and tools to utilise in my everyday life whenever I’m feeling down or unhappy with myself or my life and I honestly have no clue where I would be without the help of CanTeen and its counselling services! Please don’t ever feel as though you don’t need counselling when you’re struggling with something, even just having that ear to listen to you complain about small things makes the world of difference.
CanTeen Australia Annual Report 2014 | Page 13
First year of individual support
FACT:
Research indicates that identification of psychosocial issues followed by targeted intervention can positively affect young people’s lives. A cancer diagnosis has a significant impact on a young person’s life, whether they are the patient or it is their parent or sibling that is affected. At CanTeen, our research into the needs of young people living with cancer has enabled us to become experts in the types of areas that these young people need support. However, every young person is unique and that’s why we help those who access our programs and services to identify their individual needs and support goals. In 2013/14 we began piloting a process of conducting individual assessments and developing care plans for all young people who join CanTeen. This process has enabled our staff to better understand the individual needs of each young person when they join. Following this assessment, young people are provided with tailored support and regular reassessment of their needs and goals, providing an opportunity to reflect on their progress and identify any further areas in need of support. Establishing new goals relevant to their current needs is a priority to ensure young people continue to receive support that is unique to their cancer experience. Staff members can also use the opportunity to recommend extended services such as counselling and skills-based programs that can enhance a young person’s ability to cope. Staff comment that conducting assessments and reviews has assisted them to not only identify and work with issues faced by young people earlier, but that the new model has resulted in more time spent meeting the needs of individual Members.
We are currently finalising the evaluation of the pilot and will continue to refine and extend the Individual Support Model over the coming year. The information we collect on young peoples’ needs allows us to continue to develop and revise our programs and services to ensure they align with the needs of young people living with cancer, enabling each young person to receive the best support possible.
Key Achievement: We successfully piloted the introduction of our Individual Support Model and since September 2013 we have guided 282 young people through this process to ensure they receive individual support in line with their unique needs. CanTeen Australia Annual Report 2014 | Page 14
Youth Cancer Services
FACT:
Every day, another three young Australians aged 15-25 are diagnosed with cancer and approximately 75 per cent require in hospital treatment. Young people experience a unique mix of cancer types, including childhood cancers and more adult type cancers. Whereas 90% older adults tend to be diagnosed with similar tumours, in young people the opposite is true with 20 different cancer types accounting for 90% of cancers. Some cancers in young people appear to have inherent biological differences which make them more difficult to treat and there are a greater number of ‘poor prognosis’ cancers in this age range, different genetic and chromosomal abnormality cancers which are less responsive to treatment and more advanced disease. The Youth Cancer Services (YCS), funded by CanTeen as well as Federal, State and Territory health departments, provide age appropriate treatment and support for 1525 year olds diagnosed with cancer, through specialised multi-disciplinary teams of oncologists, nurses, social workers and other allied health staff. Five lead hospitals based in Sydney (Sydney Children’s Hospital Network, Prince of Wales), Brisbane (Children’s Health Queensland), Adelaide (Royal Adelaide and Women’s and Children’s), Melbourne (Peter MacCallum Cancer Centre) and Perth (Sir Charles Gairdner) collaborate with 14 other hospitals to provide national coverage. In the past 12 months, 545 new patients have been referred into the YCS, 320 patients have been provided with fertility preservation information and 409 have undertaken a psychosocial screen to assess their levels of distress. Including new and existing patients, 1,364 have received psychosocial care, 521 received supportive care such as music therapy or exercise physiology and 346 received education and vocational support provided by the hospital or Redkite. Over the past year, there has also been significant progress on national YCS priorities: • Workforce development - two national network meetings have provided professional development to up to 120 health professionals and 10 scholarships have been awarded for tailored postgraduate studies at the University of Melbourne;
• Resources and tools – new fact sheets, brochures, posters and other materials have been developed using the new YCS brand; • Youth participation – a new national Advisory Group was established with 12 young people providing regular input on service design, delivery and evaluation. The group have also undergone professional development in leadership and research participation and evaluation and presented to the YCS health professionals on their experiences during their cancer journey; • Research – a Research Priorities Project has been undertaken to determine the priorities for research on young cancer patients with the outcomes to be finalised in the coming months; and • Data – a major consultation was undertaken with the state based cancer registries and other work undertaken to determine the way forward on the central collation of data on young cancer patients so that there can be much more effective monitoring of their health outcomes. In addition, the YCS have commenced collecting activity data, which will be used to track utilisation, monitor activity and for reporting and service improvement purposes. • Inaugural YCS International Scientific Congress and Youth Cancer Summit – work has commenced in preparation for two conferences to be held in Sydney in December 2015. A Youth Cancer Summit will provide a forum for young cancer patients, their carers, partners and family to come together to connect, learn, network and support each other. The Scientific Congress will see international AYA oncology specialists from around the world converge on Sydney to discuss current treatment, research, therapies and developments in the field.
Key Achievement: More than 1,500 young cancer patients received medical treatment and/or psychological support through the Youth Cancer Services in 2013/14. CanTeen Australia Annual Report 2014 | Page 15
MY STORY
I was diagnosed with Acute Lymphoblastic Leukaemia on April the 1st, 2012 – April Fool’s Day! My treatment started almost immediately afterwards. It consisted of four stages of chemotherapy over an eight to nine month period which was heavy dosages and meant a lot of time in hospital. Afterwards I had one last stage left which just consisted of oral chemotherapy as well as a few lumbar punctures which lasted until April of this year, 2014. Overall my treatment happened over two years; I started when I was fourteen and finished when I was sixteen. I missed a bit of my childhood due to being in hospital, but my oncologist and exercise physiologist at the SA/NT Youth Cancer Service were really supportive, which made it easier to cope with everything that was going on. The oncologist helped me understand my cancer and get through the treatment while the exercise physiologist helped me rebuild my strength, these were two important factors that helped me throughout my treacherous journey. I am a member of the SA/NT Youth Advisory Group and I really value being able to have an important say in helping other young cancer patients like me. Recently I was asked to join the YCS National Youth Advisory Group and this gives me a national perspective on my experiences, like learning about diversity and different methods to tackle cancer around the country. I now feel like I have more knowledge and can use it to contribute to improving the experience of cancer for young people.
Thomas Age 17
Dr Antoinette Anazodo Lead Clinician, NSW/ACT Youth Cancer Service Dr Antoinette Anazodo trained in Paediatric and Adolescent Oncology in the United Kingdom and completed her training with a clinical fellowship at the Kids Cancer Centre at Sydney Children’s Hospital, Randwick. She was appointed as Lead Clinician of the NSW/ACT Youth Cancer Service in 2010.
Improvements in cancer diagnosis and treatment in AYAs have led to significant improvements in survival rates and, in turn, a greater focus on the quality of survivorship. Unfortunately, fertility can be affected by some cancer treatments and currently there is a lack of evidence based information about fertility preservation and assisted reproductive therapy practices.
I feel very fortunate that I was able to work with colleagues to develop the Youth Cancer Services so that all adolescent and young adult (AYA) cancer patients can have access to age and tumour specific medical treatment as well as psychosocial assessment and care navigation.
In addition, cancer patients themselves often don’t pursue fertility preservation with barriers potentially including a lack of standardised guidelines; difference in or lack of specialist advice; limited outcome data regarding safety and efficacy; costs and psychosocial distress; health literacy as well as ethical and legal issues.
As the lead clinician for the NSW/ACT Youth Cancer Service, I provide guidance and leadership around the care of AYA patients as well as working nationally with other YCS Lead Clinicians, Service Managers and CanTeen staff. I also have a strong interest in the specific psychosocial, educational and vocational challenges that AYA patients face during and after treatment. My appointment across the paediatric and adult campus provides many opportunities for clinical and research collaborations. I am very excited about the fertility preservation research projects our centre is leading.
The project I’m currently working on will establish the Australasian Oncofertility Registry collecting data from cancer and fertility specialists. This research will lead to the development of evidence-based national guidelines and assist clinicians in providing accurate risk projections for future infertility and reproductive health following cancer treatment. We are also hopeful that the study will lead to an application to the Department of Health for Medicare funded fertility preservation for cancer patients of all ages.
CanTeen Australia Annual Report 2014 | Page 17
Peer Support
FACT:
A lack of support and understanding from friends is one of the biggest challenges faced by young people living with cancer. Sometimes the best person to speak to about dealing with cancer (the good, the bad and the ugly) is someone who has been through it themselves. At CanTeen, young people facing cancer can meet and support each other, share their experiences and have some fun.
In 2013/14, CanTeen held 192 programs across Australia ranging from week-long camps to a halfday break. More than 1,200 young people attended and thanks to the generosity of CanTeen donors and corporate supporters, the events were all completely free of charge.
CanTeen has a long and proud tradition of peer support and our programs are a chance for young people to make new friends, develop skills to cope with their cancer experience and get a much needed break from the daily stresses and strains of living with cancer.
PROGRAM SNAPSHOT – WILDERNESS PROGRAM
In March 2014, a group of 16 CanTeen Members from New South Wales, Victoria, Tasmania and the ACT spent three days hiking through the beautiful Freycinet National Park as part of the annual Wilderness Program. The experience gave them a sense of independence and achievement while also providing the opportunity to reflect on their cancer journey in a peaceful, natural environment.
Key Achievement: 1,215 young people got much needed peer support by attending one of 192 CanTeen programs this year. CanTeen Australia Annual Report 2014 | Page 18
MY STORY I was 11 when Mum was diagnosed with cancer. She was unwell for a few months and I didn’t go to school that much during that time. I wanted to spend time with her. Then one day she started getting even worse and then she passed away. When Mum was still alive, her, my Dad and my aunty were talking to me about how to join CanTeen and how CanTeen would help me with her being sick and in case she did pass away. I think I would be a different person if I didn’t have CanTeen. I try to go on as many programs as I can. I’ve been to Winter, Spring and Summer camps as well as taking part in National Bandanna Day and some other programs too.
Bailey Age 15
You feel good about yourself at camp because you have new friends and you get to spend time with them and you have friends from different suburbs around the place.
On the programs they help you through it. The staff are really good and CanTeen is a big part of my life. I know that they can support me and it’s good to know that there are other people that have gone through a similar thing. If there was no CanTeen I’d probably be upset pretty much every day.
Research and Evaluation CanTeen is committed to undertaking high quality research and evaluation that enhances our knowledge, understanding and insight into the needs of young people living with cancer and the most effective ways of supporting them.
FACT:
Infertility is a significant and distressing outcome of cancer treatment for some adolescent and young adult survivors. CANCER AND FERTILITY CanTeen was involved in a collaborative research study (led by the University of Western Sydney) to find out about the fertility issues and concerns for young people with cancer and their partners. The research found that an overwhelming 88% of young people believed that fertility related issues should be discussed either at each stage of the cancer journey or at the time of diagnosis. Yet unfortunately nearly 50% of young people who were interviewed had not used or received any information on fertility.
In 2014/15, CanTeen will evaluate the usefulness of the Maybe Later Baby book for young cancer patients. We hope to find better ways to support people who are living with cancer to deal with the impact of cancer on their fertility. “Look, I know I’ve got cancer. That doesn’t bother me. What bothers me is that I’m possibly going to lose the opportunity to have children”.
CanTeen’s research team, in collaboration with the University of Western Sydney, used this information to revise our fertility book called Maybe Later Baby, which provides information for young cancer patients both before and after treatment.
Key Achievement: Learning about the impact of fertility issues on young people living with cancer through our research and incorporating this insight into a new book to support young cancer patients with fertility concerns before and after treatment. UPDATE ON TRUCE CanTeen’s research team has also continued its research project called Truce which is a 7 week skills based psychological program for young people whose parent has cancer. Truce aims to address the needs of young people and help them cope better with having a parent or caregiver with cancer. In 2014/15, CanTeen will continue to deliver the Truce program, expanding to new locations including Melbourne, Canberra, Hobart and Gosford. CanTeen Australia Annual Report 2014 | Page 20
Cassie Age 17 MY STORY In late 2013 I found out my Mum was diagnosed with breast cancer. The most traumatic thing is the constant rollercoaster that you’re on from day one – from finding out what Mum had, to what treatment comes next after the surgery, and all the time delays and each treatment and each doctor’s appointment. You don’t know what’s coming next. The most helpful bit about Truce was having other people there. There was even another girl in my group whose Mum had gone through the same thing. It was nice to know that everything I was feeling she had felt before, and to hear how she coped with it. It was good to be able to relate to someone else – we got along really well and really connected.
Karen, Cassie’s Mum
If I hadn’t joined Truce, I wouldn’t know how to handle things and step back. I have learned to look at what is actually happening instead of feeling what is happening. I have changed in that respect so that if I do get really bad news, I can sort of prepare myself and deal with it differently. I know that without Truce, I would have been a mess through my HSC. Not only did they help me deal with the emotions that came from my mother having cancer, they also helped me separate my emotions and de-stress a little bit before my exams.
Cassie’s an only child and I’m her only parent so she was going through a lot of mental anxiety at the thought of losing her Mum. It was hard on her – it really was. Once she started going to Truce and she was there with other young people going through the same thing, it really helped her understand that she’s not alone – there are other people going through it. And it made her a lot stronger in herself. She didn’t feel so isolated. She actually came out more confident and able to deal with situations better.
CanTeen Australia Annual Report 2014 | Page 21
Dr Pandora Patterson (BSocSc (Hons 1), PhD, MAPS) General Manager – Research, Evaluation & Social Policy, CanTeen and A/Prof Cancer Nursing Research Unit, Sydney University
Dr Pandora Patterson has worked at CanTeen as the General Manager of Research, Evaluation and Social Policy for 9 years and prior to that as a researcher and psychologist within the NSW Health Department’s Child and Adolescent Mental Health Service. She has over 20 years’ experience working clinically with young people and their families.
My team collaborates with universities and health services in conducting psycho-oncology research with a focus on adolescents and young adults living with cancer. We also work across the organisation in translating research findings into practice, and in evaluating CanTeen’s programs and services. My ongoing clinical experience helps inform the research I undertake with my team and how that gets translated to develop programs and resources for young people living with cancer. One of the projects that I am particularly proud of is the development and current evaluation of the Truce program. Truce is a group program for adolescents and young adults who have a parent with cancer. Determining national research priorities for adolescent and young adult (AYA) cancer is another important project we have recently undertaken. A key initiative of the Youth Cancer Services (YCS) is to facilitate research to improve the health outcomes and quality of life of AYAs diagnosed with cancer. Given limited funding, a first step towards this initiative was to determine research priorities. The results of our project are guiding the decision-making process of the YCS and informing strategic research investment decisions that will ultimately contribute to improvements in treating and supporting young people with cancer. I am looking forward to continuing to work at CanTeen to provide evidence-based support for young people living with cancer. It has been wonderful seeing the Individual Support Model implemented nationally (see page 14) using the needs measures developed through our research. Young people are now given the opportunity to identify their specific needs in relation to their cancer experience and work with our staff in getting the support they need. I thoroughly enjoy working at CanTeen. We are an incredibly nimble and responsive organisation and I am proud of the way that we truly do ground our work with young people in a strong evidence-base, ensuring they receive the best possible support.
EVALUATING THE DISTRESS THERMOMETER MEASURE FOR ADOLESCENT AND YOUNG ADULT PATIENTS Since 2011 patients treated through the Youth Cancer Services (YCS) have been screened for distress using the Distress Thermometer and Problem Checklist Tool. This allows triaging of patients who need additional psychological support as well as identification of areas of concern from a number of domains including practical, emotional, family and information. The Distress Thermometer and Problem Checklist were initially developed for use in adult populations and while there was considerable consultation with clinicians and patients before using the tool with adolescents and young adults, to date there has been no formal evaluation of its use.
CanTeen’s research team in conjunction with YCS clinicians and researchers at the University of Sydney and New South Wales have begun a national research project to evaluate the Distress Thermometer and Problem Checklist with adolescents and young adults diagnosed with cancer. The study also involves measuring satisfaction and acceptability of using these tools by both patients and clinicians, and determining the prevalence and predictors of distress in this group of young people. Through our international collaborations we are working with researchers in the UK, US and Canada who are also interested in using these tools. This will allow us to compare results and combine data for more detailed analysis.
CanTeen Australia Annual Report 2014 | Page 23
Information CanTeen’s trusted and respected information resources continue to be in high demand, with 10,321 copies distributed during 2013/14. In order to increase accessibility, all CanTeen publications are now available as e-books through the CanTeen website. The suite of more than 10 books provides practical, helpful advice specific to young people dealing with cancer.
FACT:
Access to information is one of the highest unmet needs for young people living with cancer. FRIENDS RESOURCES One of the biggest challenges young people living with cancer report is a loss of connection with friends. This leaves many feeling isolated, lonely and that they’re missing out on a ‘normal’ life. Friends of young people affected by cancer tell us they want to know more about the effects of cancer and what they can do to help.
CanTeen also added a new resource to the series aimed specifically at young people whose partner has cancer. Finding out your partner has cancer can be extremely distressing and coping with the experience as a young person is a huge challenge. Similarly, young cancer patients themselves often feel isolated and alone due to a lack of support and understanding from partners.
In 2013, CanTeen launched a new series of booklets designed to help friends and an evaluation of the resources conducted in 2014 found that both young people living with cancer and their friends regarded the booklets as helpful, easy to understand, ageappropriate and containing information they needed.
The resource includes information about the physical, emotional and practical impact of cancer as well as useful tips on what to say and do to support a partner with cancer.
Eighty-nine percent of young people and 100% of friends ‘agreed’ or ‘strongly agreed’ that they would recommend the booklets to others in a similar situation.
Key Achievement: More than 10,000 books sent out to help guide young people through the challenges of living with cancer. “I think it’s very important to talk to your partner about their stresses and pressures as well as yours. Topics we found hard basically included anything negative e.g. side effects of treatment/ illness and the possibility of treatments not working. The best advice I could give is not to focus on these things until they happen (much easier said than done I know).” CanTeen Australia Annual Report 2014 | Page 24
Rebekah Age 19 MY STORY My Mum was diagnosed with Stage IV metastatic melanoma in April 2012. She underwent full brain radiation and had to have a bowel resection. She spent most of her time in hospital and missed my graduation from high school and my Year 12 formal. She passed away in December. I would be lying if I said my friendships didn’t change. When I told them Mum was sick, not one of them knew what to say. They were speechless. I don’t think they knew how to comfort me – how are you meant to comfort someone whose parent is dying? I think we were all scared. Amber (in the photo) has been an absolute angel. She was there for me when others didn’t want anything to do with it. Other so called friends didn’t understand and honestly didn’t want to. Those friends are mere acquaintances now.
I really loved the CanTeen friends booklet. It’s very handy and gives a lot of tips on what to say and how to comfort a friend. It also gives a great explanation of grief and how it can show differently on different people. I think it’s a fabulous resource and is very useful for those friends of people that haven’t gone through something like this until it happens. Not many people know how to react to something that they have never encountered before. My friends absolutely loved it. It gave them such a better understanding of how I was grieving and how they were grieving as well. They also took some of the tips on and did things with me on Mum’s anniversary and her birthday. I think the booklet has helped them in more ways than one. They think it’s a great resource, and having read it they don’t know what they would do without it.
CanTeen Australia Annual Report 2014 | Page 25
Developing CanTeen’s young leaders
FACT:
Young people living with cancer fill more than 100 leadership positions within CanTeen. CanTeen is passionate about empowerment and is proud to have young people living with cancer actively involved at all levels of the organisation providing direction, feedback and advice.
Any young person that receives support from CanTeen can become a Member (there’s no charge) and put themselves forward to participate in the organisation’s governance structure.
As a Member-led organisation, every aspect of CanTeen’s work is informed by young people which ensures that we get our services, programs and information right.
For more information about CanTeen’s Board Members, see pages 36 and 37.
Board of Directors
Member Advisory Council
Divisional Committees
Five Member Directors are joined by four volunteer Associate Directors.
Each Division elects one Member to sit on the MAC and advise the Board.
Members hold the great majority of positions on each Divisional Committee.
MENTORING PROGRAM The CanTeen Mentoring Program was developed during 2013/14 in order to support the individual development of CanTeen’s young leaders. It aims to provide them with a tailored, individual development plan and help them achieve self-set goals.
The program represents an important partnership between CanTeen and the Deloitte Foundation by offering our young leaders access to the expertise and experience of Deloitte staff. Mentoring opportunities will start during the second half of 2014.
Key Achievement: Development of a Mentoring Program for CanTeen’s young leaders with corporate partner Deloitte. CanTeen Australia Annual Report 2014 | Page 26
Jessica Age 19 MY STORY My cancer journey began back in 2010 when my youngest sister Olivia, who was just four at the time, was diagnosed with Sertoli Leydig Cell Tumour. The tumour was around the size of a football attached to her ovaries. This diagnosis came as a huge shock to the whole family as it wasn’t something that any of us ever expected to happen. I joined CanTeen in 2010, a few months after the diagnosis. I found that it was really hard for people who have not been through a cancer experience to understand how you are feeling, and what it is like. This is why I loved CanTeen so much. CanTeen offered peer support to me. I was able to talk to and get to know other young people who had also been through cancer experiences. Not all cancer journeys are the same, but talking to someone who has been through a similar experience is a really great thing. Since attending my first CanTeen program I have not looked back. My leadership journey within CanTeen began back in 2011 when I attended my first National Leadership Program as a potential leader. I absolutely loved this program. I learnt so much about the leadership within CanTeen as well as gaining many new skills that I could apply to many aspects within my life. It was this program that encouraged me to involve myself in the leadership side of CanTeen. Prior to the 2012 elections I was encouraged to run for the Member
Advisory Council (MAC). I thought that this would be a great opportunity for me to contribute to CanTeen. In 2012 I was elected as the Tasmanian MAC member. Since my appointment to the MAC I have learnt so much and gained so many new skills. I have enjoyed being able to contribute to CanTeen through advising on things brought to the MAC. One thing that I am incredibly proud of is being able to provide input into the development of the new online support platform. Through the MAC’s involvement I feel that this service is really going to have a hugely positive impact on many young people living with cancer. In 2013 I was elected to be the Chair of the MAC and it’s something that I am also very proud of. To be able to chair such a wonderful group is something that I thoroughly enjoy. I have just been re-elected to continue on for another two years as the Tasmanian MAC member, which I am very excited about. CanTeen has provided me with so many opportunities. I am thankful that I am able to contribute to this organisation in a positive way that I feel helps other young people living with cancer.
CanTeen Australia Annual Report 2014 | Page 27
The road ahead The Member Directors (young people living with cancer elected to the Board), Ali, Mat, Lachie, Sam and Alix are very proud of their organisation. They are the majority shareholders and it is this direct input from young people living with cancer through the young Directors, the Member Advisory Council and Division Committees, that makes CanTeen what it is. Their passion is to see as many young people living with cancer have access to the same tremendous support that they have experienced through CanTeen. To this end they have set us a target of providing direct support to 5,000 young people in 2017 which will mean that CanTeen will have more than trebled the number of young people supported in 2012, when we set out the strategic plan for the next five years. To make this happen the coming year will see a campaign to let the 23,000 young people living with cancer know that there is support for them through the new online support platform, the hospital based Youth Cancer Services and our community based social workers, youth workers and counsellors.
We will begin to progress a national set of research priorities for young patients as well as the analysis of patient data held by cancer registries in each state and territory. Hospital professionals that work in conjunction with the Youth Cancer Services will be provided with professional development and the International Conference and national Youth Cancer Summit will be significantly developed in their planning. Schools will be assisted with creating supportive communities for young people living with cancer. CanTeen’s young leaders will be mentored by Deloitte staff and receive training through our National Leadership Program in Tasmania.
We will put more social workers on the ground across Australia to respond to the growing demand for support and more people will have counselling than ever before. The number of patients assisted by the specialist Youth Cancer Services through our strong partnership with state and federal governments is expected to grow by 10%.
In short, we are on a mission and we are in a hurry to reach even more young people living with cancer and make the most significant difference possible. The Board wants to acknowledge the wonderful, passionate CanTeen staff that make all of this happen. They are excited about the year ahead and dedicated to this incredibly important cause.
The measures developed by our research team, which we implemented last year, will provide clear visibility regarding the impact of our support on the young people that connect with us and help us to become even more effective.
This wouldn’t be possible without the generous support provided by individual donors, corporate partners, trusts and foundations as well as Federal and State governments.
CanTeen Australia Annual Report 2014 | Page 28
Financial Summary CanTeen can only continue to provide programs and services to young people living with cancer through the ongoing support provided by individual donors, corporate partners, trusts and foundations as well as Federal and State governments. During 2013/14 CanTeen was once again very fortunate to have received generous support from many individuals, organisations and government. Total income received for the year was just under $24m, a similar figure to that received in the previous financial year. As in recent years, CanTeen’s regular giving program provided the majority of our funding with more than $15m generated over the last twelve months. A further $2.7m was donated by individual supporters in many different ways including through our appeals during the year and National Bandanna Day, held in October. National Bandanna Day is now in its 20th year and has become one of the most popular and well-supported charity events held anywhere in Australia. As well as providing much needed funding for CanTeen, National Bandanna Day helps create awareness and also offers an opportunity for hundreds of volunteers around Australia to engage with the cause. Support from the corporate community was also important in 2013/14 with more than $1.4m of income received from organisations and their employees. In addition, funding from grants and foundations increased from the previous year. nib foundation, in particular, continues to be a great supporter of CanTeen with their ongoing financial support for our face to face counselling service. As well as direct financial support, CanTeen is fortuitous to have many significant and long standing partnerships with organisations providing pro-bono support for crucial services. These organisations include PwC, who provide financial and accounting support, and Herbert Smith Freehills, who provide legal support.
As a result of the significant financial support CanTeen has experienced in recent years, we have been able to continue to expand our programs and services and direct more funds towards delivering support for young people living with cancer. During 2013/14, CanTeen has: • Launched a world first online support platform for young people living with cancer • Supported 1,538 young cancer patients through the hospital based Youth Cancer Services • Conducted 1,394 counselling sessions • Provided 1,215 young people with highly valued peer support programs • Sent out 10,321 free books Looking ahead, we want to achieve even more because a growing number of young people are now turning to us for help. In fact, every year another 23,000 young people face the challenge of cancer and CanTeen is committed to ensuring they don’t have to do it alone.
Income Chart
19.5
19.8
2010/11
2011/12
24.2
24.0
2012/13
2013/14
13.1 11.4
CanTeen is also very fortunate to have the financial support of the Australian Government. During 2013/14, government funding provided more than $3.1m for the Youth Cancer Services and the recently launched online support platform for young people living with cancer. 2008/09
2009/10
CanTeen Australia Annual Report 2014 | Page 30
Income Summary
National Bandanna Day
4.4%
Individual Supporters
73.8%
Corporate Support
5.9%
Grant
1.9%
Government Funding
13.1%
Other
0.9%
Appeals (inc. Telemarketing)
8.1%
Regular Giving
84.9%
Community Fundraising
3.3%
Bequests
2.3%
Other
1.3%
Youth Cancer Services
58.3%
Peer Support Programs
33.0%
Research
2.0%
Counselling
3.1%
Resources (Publications)
3.6%
Service Expenditure
For more detailed financial information, please refer to CanTeen’s Annual Financial Report which is available on our website. CanTeen Australia Annual Report 2014 | Page 31
Thank you to our supporters
FACT:
Donations from individual supporters form 74% of CanTeen’s income. Whether it’s through regular monthly gifts, donating to appeals or one off contributions, CanTeen relies on everyday Australians for the majority of our income. During 2013/14 we were supported by more than 59,000 regular donors and almost 19,000 other donors. CanTeen’s vital work helping young people facing cancer couldn’t continue without their generous support and we are incredibly grateful for every donation we receive.
MY STORY I started donating to CanTeen in 2006 after I was called by a fundraiser who explained the good work that CanTeen do. I was particularly interested in doing something to support young people dealing with cancer – the issue touches me as it’s a time of life that they should be enjoying. Cancer is a terrible disease to have to cope with and particularly so for young people. The support and counselling CanTeen provides to young people living with cancer is incredible and the organisation also gives them the opportunity to discuss issues with their peers. I’d encourage anyone else to give what they can to CanTeen.
Bill Timmony
MY STORY CanTeen is a well-recognised charity in Australia, helping young people through the tough challenge of cancer. As a medical specialist, I have seen and helped these young people, and I have witnessed the much needed support that CanTeen provides. One of the great things about CanTeen is that it helps young people living with cancer to understand that they’re not alone. It’s empowering for young people to realise that what they’re experiencing has happened to others like them. There are some very confronting facts that a cancer diagnosis brings, and having people around you who can support you through this difficult journey is really important. I dedicate my working life to helping those in need and have been supporting CanTeen for over 5 years now. It provides me with yet another avenue to help young people whose lives have been affected by cancer. There are many worthy causes, but it’s important sometimes to put yourself in the shoes of another and think - if I was in this situation, how much would I wish someone made this support possible for me? If it comes down to choosing to help a young person affected by cancer, there really is no choice.
Dr David McIntosh
CanTeen Australia Annual Report 2014 | Page 32
COMMUNITY FUNDRAISING Thank you to the hundreds of supporters who joined ‘Team CanTeen’ this year by running, cycling, trekking or swimming as part of charity events across Australia and even internationally. Our biggest community fundraiser during 2013/14 was the On Road LifeCycle for CanTeen in WA. More than 130 supporters rode from Perth to Busselton raising an incredible $153,235. We’re also very grateful to everyone who organised a fundraiser for CanTeen and the numerous community events that chose to support us.
NATIONAL BANDANNA DAY 2013 It was wonderful to see so many Australians get behind National Bandanna Day 2013 and show their support for young people living with cancer. With more than 230,000 bandannas sold, the campaign raised $1.49 million and we’d like to thank everyone who bought and wore a bandanna. We also hugely appreciate the ongoing support from committed school and community groups as well as individual Australians who volunteer to sell bandannas for us. We are grateful to Big W, Wendys and LS Travel Retail (Newslink) for their involvement, as their support contributes significantly to the event’s success.
CanTeen Australia Annual Report 2014 | Page 33
PARTNERSHIPS AND MAJOR SUPPORTERS Partners play a vital role both in terms of fundraising and providing in kind or other support to CanTeen. We’d like to express our gratitude to the following corporate and community partners as well as other major supporters:
CanTeen has received funding from the Australian Government, Department of Health.
CanTeen Australia Annual Report 2014 | Page 34
Corporate Supporters 7HOFM
On the Run
AGL Energy Ltd
Origin Energy – Eraring Power Station
AON Charitable Foundation
Pembroke School
Australian Executor Trustees
Perisher Blue Pty Limited
Badenoch Real Estate
RA Gale Foundation
Best Western Hobart
Restorative Prosthetics Implant Centre
BHP Billiton Matched Giving Program
Ritchies Stores
Black Wolf
SAFM
Braemac Pty Ltd
SBX for Charity Ltd
Canberra Grammar School
SEEK
Capit.el Group and PACIFIC Bondi Beach
Snap Printing-Fyshwick
Capitol Chilled Foods (Australia) Pty Ltd
Southern Alps Ski Club
Chad Hancock
Southern Cross Transit
Chevron
Supply Chain and Logistics association of Australia – WA Branch
Commonwealth Bank Staff Community Fund
Tabol of Nolidge
Conference Complete
TDT Ten
Daramalan Port Club Members
Terrace Tower Holdings Pty Limited
Eildon Boat Club
Terry Campese Foundation
Fight4Life
The BANKTECH Group Pty Ltd
Goolabri Functions & Events
The Fuller Family
IDP Lawyers
The Good Guys Foundation
Jamberoo Action Park
The Lions Club of Wantirna
Jemena Limited
The Lions Club of Warrandyte
Kosciuszko Thredbo Pty Ltd
Trading Pursuits Pty Ltd
Mayner & Cochran Pty Ltd
Transborder Express/Qcity Transit
Merck, Sharp & Dohme
Warkworth/Mt Thorley Lodge
MM Electrical Merchandising
Westpac
Mt Thorley Lodge - United Mineworkers Federation of Australia
Winslow Group
Narooma Sport and Game Fishing
Individual Supporters Estate of Ruby Rose Anderson
Roger Lago
Clive Austin
Brian Little
Madeline Benson
David McIntosh
Nigel Biginell
Corrina Newman
Gavin Bird
Serafina Pedavoli
Robert Brakspear
Joanne Phillips
Dan Brierley
Tenayah Renshaw
David Caldwell
Estate of Ann Scott
Doug Coleman
June Smith
Laurie Cooper
Donna Soldo
Ron & Helen Cuthbert
David Walker
Scott Dawkins
Ben White, Craig Jackett and Darren Skinner
Richard Hoogwerf
Maxine Wright
CanTeen Australia Annual Report 2014 | Page 35
Meet the Board CanTeen’s Board of Directors consists of five Member Directors and four Associate Directors, volunteers who bring relevant expertise to the Board. Our Constitution requires that our President and Vice-President are CanTeen Members, and that all votes of the Board include a majority of Member votes.
MEMBER DIRECTORS Ali Duncan (National President and Chair) Ali is a Bereaved Offspring Member. She joined CanTeen in 2004 after her Mum was diagnosed with lung cancer and later, a secondary brain tumour. Ali has been on the Member Advisory Council since finishing high school and in August 2012, Ali was elected as CanTeen’s National President. Complementing the work Ali does for CanTeen, she has completed a Bachelor Social Work (Honours) degree. Mathew Gilliland (National Vice-President and Deputy Chair) Mathew has been a Member of CanTeen since 2003 and a Member Director since June 2012. Having received unparalleled support from his friends at CanTeen — including on the night his Mum died — Mathew is committed to giving back and has held a range of leadership positions. Mathew holds a Bachelor of Economic and Social Sciences (Honours) and works as an economist and public policy analyst in Canberra. Alix Bateup Alix joined CanTeen after her Dad was diagnosed with prostate cancer. She has held several leadership roles and became Division President for ACT and Southern NSW in 2008 at the age of 15 before progressing to the Member Advisory Council and then the Board. Inspired by her CanTeen experience, she is now a Youth Worker.
Lachlan Korvin Lachlan is a Patient and Bereaved Offspring Member. His Mum passed away in 2003 and 18 months later he was diagnosed with a testicular cancer. Lachlan has lived and breathed the CanTeen Values since his first program in 2006 and joined the Board in 2012. He is now working as a radiographer.
Samantha O’Neill Samantha joined CanTeen as a Patient Member in 2005 when she was diagnosed with a carcinoid tumour in her right lung. She became Victorian Division President in 2012 and joined the Member Advisory Council the following year for 2 years and then became a Board Director during 2013. Samantha is currently working for ANZ while also studying a Diploma of Business and Finance.
CanTeen Australia Annual Report 2014 | Page 36
ASSOCIATE DIRECTORS Kieran Schneeman (joined May 2014) Government Affairs Director, AstraZeneca Australia Kieran is one of the country’s most respected Government Affairs professionals. His experience as a senior adviser within the Howard Government followed by high profile industry and corporate roles makes him well placed to advise organisations on engaging with political parties and Government.
Helen Souness Managing Director – Australia and Asia, Etsy Helen is a senior leader with strong strategy, product and marketing skills with more than 20 years’ experience working in blue chip digital, communications and content companies in the US, Europe and Australasia.
Michelle Vanzella, Executive Manager Customer Intelligence, Suncorp Group Michelle is an innovative and entrepreneurial senior executive with extensive experience working with CEOs and Boards leading diverse sales, marketing, customer, product and new business development teams in complex, large scale multinationals.
John de Zwart Managing Director and Chief Executive Officer, Centrepoint Alliance Limited John is a senior executive with over 25 years senior management experience primarily in the financial services industry both in Australia, the United Kingdom and New Zealand. John’s expertise is transforming companies operating in highly competitive markets.
CanTeen Australia Annual Report 2014 | Page 37
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