On January 19 an energised and insightful group of patients and carers met to discuss how to improve the National Ewing Sarcoma Multi-disciplinary Team (NEMDT). The session was led by Dr Jessica Bate.
The NEMDT is a unique forum that brings together experts from around the UK to discuss individual patient treatment plans to ensure good practice and ultimately to improve the survival rates of UK patients with Ewing Sarcoma. It was formed in 2011, following an international consensus meeting supported by the Bone Cancer Research Trust.
Together with Ewing's Sarcoma Research Trust, we are supporting Dr Jessica Bate as the first ever NEMDT Fellow to work at national level to shape and improve the treatment strategy for patients with Ewing Sarcoma. Dr Bate is a paediatric oncology consultant based at University Hospital Southampton. Dr Bate has extensive clinical research experience within paediatric oncology and is an NIHR grant holder. She has a strong interest in sarcoma, supportive care and patient / public involvement in research.
Last week's Patient/Carer Advisory Group meeting was the first of its kind, with patient and carer voices at the heart of a session to improve NEMDT working from a patient perspective. The group compared experiences and evaluated how the NEMDT has worked to date, as well discussing how their views and preferences might be put into practice and ways in which the NEMDT might be improved.
Would you like to get involved? Dr Bate is keen to involve patients and families affected by Ewing Sarcoma to act as advisors to her research in order to influence the NEMDT of the future. You would be working in partnership with other patients, carers and researchers. You do not need any previous experience, just a willingness to attend informal meetings (by phone, email or in person depending on your preferences) and to give your perspective as someone with experience of Ewing Sarcoma. The positions are voluntary but support will be provided and travel expenses will be reimbursed.
The NEMDT project is committed to involving patients and carers to ensure that their research benefits patients. If you are interested in finding out more please contact the project via email. You can also keep up to date by following Dr Bate on Twitter @Jessica_Bate.