Jessica Burke

Project Manager

Main Areas of Work are:

From July 2010, I will be facilitating eight user-led groups to develop condition specific Route Maps. In addition to the Route Maps, I will develop a written methodology and ‘toolkit’ for future groups to be able to develop their own Route Map for a specific condition.

The project will provide organisations with limited resources a practical and cost-effective framework for improving information, access and coordination of health and social care services for individuals and families. This project aims to develop a methodology to address the issue in the long term across a wide range of conditions, systematically harnessing the unique expertise of user led support groups and developing their role in information provision and self directed care.

There is a need for Route Maps as there is an estimated 2.9 million people in England likely to develop a rare condition at some point in their life and current service provision for people with rare conditions is unsatisfactory. The lack of information about rare conditions means that it is extremely difficult for patients and families to play an active role in their care, make informed choices about their treatment options or plan for their future.

This project is funded by the Department of Health in England.

From June until October 2011, I will also be working on two new projects commissioned through the National Specialised Commissioning Team (NSCT). They are looking into information provisions for people with rare conditions. The first project is Patient Information Pathways, which will be defining what makes a ‘good’ information pathway as well as looking at specific pathways developed by providers to find areas of good practice and areas for improvement. The second project is analysing information available for patients with rare cancers commissioned by the NSCT, once all the information is collated we will be reviewing the information to find any gaps before providing all the information to the National Cancer Action Team for inclusion on the Cancer Information Prescriptions website.

Email: jessica@geneticalliance.org.uk