introducing sarcoma uk roger wilson. first steps … roger wilson – patient (dx 1999)...

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

Roger Wilson

roger@sarcoma-uk.org