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Introducing Sarcoma UK

Introducing Sarcoma UK. Roger Wilson. First steps …. Roger Wilson – patient (dx 1999) Journalist Sarcoma UK launched as newsletter First edition April 2003 Distributed by specialist treatment units 7 th edition now published Today - contact with over 400 patients

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Introducing Sarcoma UK

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  1. Introducing Sarcoma UK Roger Wilson

  2. First steps … • Roger Wilson – patient (dx 1999) • Journalist • Sarcoma UK launched as newsletter • First edition April 2003 • Distributed by specialist treatment units • 7th edition now published • Today - contact with over 400 patients • Contact with every specialist clinician

  3. First steps … • Contact other patients • Sarcoma UK launched as newsletter • First edition April 2003 • Distributed by specialist treatment units • 6th edition now in preparation • Today - contact with over 250 patients • Contact with every specialist clinician • Needed an organisation

  4. Our objectives • To provide information and support to sarcoma patients, their carers and families • To support the development of a coherent national network of specialist centres to treat sarcoma in line with the best identified clinical practice • To support research which leads to better treatment and better outcomes for sarcoma patients

  5. … and so … • Sarcoma UK launched as company • January 2004 • Launch website – summer 2004

  6. www.sarcoma-uk.org

  7. … and so … • Sarcoma UK launched as company • January 2004 • Launch website – summer 2004 • Create email support group – summer 2004 • Represent patients in NHS • Encourage professionals to create British Sarcoma Group • Build links with other patient organisations in UK and elsewhere

  8. … and it grew … • Help develop guidelines • Develop range of patient information leaflets

  9. In preparation: Gynaecological sarcomas Retroperitoneal sarcoma Clinical research Tumour specific information All leaflets involve patients, doctors and nurses in their development

  10. … and it grew … • Help develop guidelines • Develop range of patient information leaflets • Provide email support • Patients share, listen and INFORM • Build hope – encourage each other • Sources of advice – eg second opinions • Help represent individual patients • British Sarcoma Group Conference

  11. Successes • Educational grants for publishing from Novartis and Pharmamar • Support of both patients and the clinical community • Recognition from the larger cancer charities • NICE Service Guidelines • Supporting patient appeals against treatment funding refusal by NHS • BSG Conference 2005, upcoming 2007

  12. Tomorrow … • Support Conticanet – pre-clinical research • Address disparities in treatment • Encourage implementation of guidelines • Launching associated charity • Contribute research resorces • Help create self-support groups • Improve sarcoma capability of existing helplines • Raise awareness with general practitioners • Create a cohort of expert patients

  13. We work with … iSPAN International Sarcoma Patient Advocate Network

  14. Our ambition … … to help change curves like this

  15. Roger Wilsonroger@sarcoma-uk.org

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