‘SurvivorNet’

1. ‘SurvivorNet’ A EUROPEAN NETWORK FOR ADOLESCENT AND ADULT SURVIVORS OF CHILDHOOD CANCER Alexandra Brownsdon & Charlotte Hails United Kingdom alexandrabrownsdon@hotmail.com

2. SurvivorNet: ‘A European Network for Adolescent and Adult Survivors of Childhood Cancer Providing a Means of Support, Communication and Information Sharing between Survivors and Professionals’.

3. History of SurvivorNet • SurvivorNet was born out of PanCare in May 2010. • PanCare - a European network of professionals, survivors and their families established in October 2008 to ensure that every European Survivor of Childhood and Adolescent Cancer receives optimal long-term care. • The need for a European support network for Adolescent and Adult Survivors of Childhood Caner was highlighted at the 4th PanCare meeting in Newcastle, October 2009. • The name ‘SurvivorNet’ was suggested at the 5th PanCare meeting, in Paris, May 2010. • SurvivorNet, its working group and advisory committee was officially founded at the 6th PanCare meeting in Mainz, September 2010.

4. Hypothesis - Identifying the Need for SurvivorNet • Many Childhood Cancer Survivor groups already exist throughout Europe and around the world, but the range of support is widely variable. • A recent search carried out and presented at the 6th PanCare meeting in September 2010, confirmed this inconsistency; • The current range of support is sporadic with no standardisation among the websites/support networks. • Many survivor groups implement an age limit of around 24 years old for those involved and there is no clear differentiation between what constitutes a ‘Cancer Patient’ and ‘Cancer Survivor’. • At present, there does not appear to be ONE single Support Network which brings together both Survivors and Professionals from across Europe to improve the long-term outcome of Adolescent and Adult survivors of Childhood Cancer, especially those over the age of 25 years. • Plans are therefore in place to develop ‘SurvivorNet’ - with the intention to benefit Adolescent and Adult Survivors of Childhood Cancer across Europe and potentially internationally.

5. Reinforcing the Need for SurvivorNet “…Welcome to Planet Cancer, a community of young adults with cancer…that age between ‘paediatric’ and ‘geriatric’ where no one knows whether to give you a lollipop or a serious talk about your fibre intake!..” (www.planetcancer.org/) USA. “…We realised that this 25 to 30 year old age group were becoming a ‘lost tribe’…no longer able to join in with the services available for young people with cancer…but simply missing out…” (Youth Cancer Trust www.yct.org.uk/). “…In order to effectively address the needs of Survivors, the focus must shift to a continuum of care that lasts a lifetime…”(www.beyondthecure.org/) USA.

6. Search of Current Support In order to establish the need for SurvivorNet - a search of existing Survivor support was carried out. • Relevant search terms were identified… Childhood, Children, Cancer, Adult(s), Young Adult(s), Patients, Young Patient(s), Young People(s), Teenage, Teenager(s), Survivor(s), Support, Late effects, Networks and Groups. • Search tool identified… ’Google’ Each search term was entered into Google and results recorded in a table.

7. How search wasconducted… • Single search terms were combined in order to broaden the search range. • A grid was created of all the single search terms that had previously generated results. • Identified the relevant combined search terms (grid on next slide). e.g. Childhood/Cancer, Childhood/Patients, Childhood/Survivors etc etc. The search term ‘Cancer/Young Adults’ generated the largest number of relevant results.

8. Grid of Combined Searches

9. Findings • I found many different websites addressing a huge range of issues. • Support is sporadic and varying among the websites - there is no standardisation. • No clear differentiation between what constitutes a ‘Cancer Patient’ and ‘Cancer Survivor ‘ • Many Survivor groups implement an age limit of around 24 years of age for those involved. • A lot of web-based support is for people who currently have Cancer and are on treatment for Cancer. • Majority of websites were from the USA and the UK 4 websites from Canada 2 websites from Australia • No websites were found from the rest of Europe…But we know that support groups exist! e.g. Germany and Austria!

10. Findings continued… • Web-based support includes; • Government websites • Websites giving Cancer advice and information with links to other websites • Websites listing potentially useful Cancer organisations and websites • Many websites relating to Cancer in Children and Teenagers • Childhood Cancer charity websites • Childhood Cancer organisation websites • Some Cancer Patient/ Survivor on-line Networks • Several websites have links to Facebook, Twitter and MySpace

11. The Solution: SurvivorNet • A separate website designed specifically for Adolescent and Adult ‘Survivors’ of Childhood Cancer, especially those over 25 years old…and based on; • The Cancer Survivors Network, www.csn.cancer.org • SurvivorNet aims to empower Adolescent and Adult Survivors of Childhood Caner throughout Europe by providing access to a wide range of valuable resources and information sources through one comprehensive network; • A Website, Database and Forum. • Regular survivors’ meetings and conferences. • Advice and information on education and employment. • Advice about affordable and appropriate Insurance/ Mortgage. • Formal mentorship programmes for Childhood Cancer Survivors across Europe. • A platform for international collaboration - interaction with the ICCSN, for example.

12. Solution: SurvivorNet NGO • Register SurvivorNet as a Non Government Organisation (NGO). • As an NGO SurvivorNet will have status as a legal entity. • As a legal entity, SurvivorNet could apply for funding and receive donations and grants from other organisations. • SurvivorNet will be better able to provide the resources identified previously. • With adequate funding, SurvivorNet can be of more benefit to Adolescent and Adult Survivors of Childhood Cancer.

13. Website, Database and Forum • A website and a database of contacts for Survivors and Professionals with a secure forum for Survivors to chat and share experiences/stories. • An area for Survivors to post information and feedback about existing Survivor groups, meetings and activities in their countries. • An area where reliable and validated research material could be displayed, including information on; • Late Effects, Education, Employment and Insurance. • Links to other useful websites and Facebook, Twitter and MySpace. • An area where Survivors can post questions to professionals and receive answers. • An area where research carried out and published by Survivors can be posted and recognised. • Links to an on-line SurvivorNet magazine/ journal - in the future. Information and website links will be country and language specific

14. Meetings and Conferences • Regular meetings and conferences. • Regional, National and potentially International levels. The first SurvivorNet meeting is proposed for November 2011 and to be held in Dublin alongside a meeting organised by another PanCare working group. Meeting will be: • Open to Survivors of Childhood and Adolescent Cancer from across Europe and beyond! • An opportunity for networking and support. • Offering accessible resources which empower Survivors to manage the challenges they face.

15. Mentorship • Setting up formal mentorship programmes for Survivors of Childhood and Adolescent Cancer across Europe. • Survivors are ideally placed to talk to patients about: • How the illness and treatments made them feel and the emotions they experienced • How they have coped with difficult situations at school, at work or socially • Survivors can demonstrate that there is a ‘life after cancer’

16. Challenges for the Future • Language: providing information in a number of European languages. • Different legislation/regulations between countries affecting employment law, insurance policies and education. • Appropriate monitoring of the website and someone to ensure that the content is reliable and legitimate. • Raising awareness of SurvivorNet across Europe. • Sustaining SurvivorNet in the future • Where next?…

17. Conclusion • The authors have identified the need for a European support network for Adolescent and Adult Survivors of Childhood Cancer. • We hope that SurvivorNet will be a valuable tool enabling Survivors of Childhood and Adolescent Cancer to communicate and share information with each other and Healthcare Professionals, thus improving their long-term outcome.

18. Acknowledgements • I would like to thank PanCare for providing Survivors of Childhood and Adolescent Cancer with the opportunity to develop SurvivorNet.