introducing sarcoma uk roger wilson. first steps … roger wilson – patient (dx 1999)...
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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– 7th edition now published– Today - contact with over 400 patients– Contact with every specialist clinician
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
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
… and so …
• Sarcoma UK launched as company– January 2004– Launch website – summer 2004
www.sarcoma-uk.org
… 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
… and it grew …
• Help develop guidelines
• Develop range of patient information leaflets
In preparation: Gynaecological sarcomas
Retroperitoneal sarcoma
Clinical research
Tumour specific information
All leaflets involve patients, doctors and nurses in their development
… 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
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
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
We work with …
iSPANInternational Sarcoma
Patient Advocate Network
Our ambition …
… to help change curves like this
