Project: Route Maps for Rare Conditions
To develop a practical and cost-effective framework
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The Route Maps for Rare Conditions project will develop a practical and cost-effective framework for improving information, access and coordination of health and social care services for individuals and families with a wide range of rare genetic conditions. This pilot scheme will support eight user-led support groups to develop a series of condition specific Route Maps. A toolkit and a written methodology will be created alongside the Route Maps so that in the future other groups can develop a Route Map for their own condition.
Each Route Map will provide a comprehensive resource for use by patients, families and health and social care professionals and will have the potential to play a key role in personalised care planning for people with these conditions. This project will run for three years from July 2010.
The eight groups will be confirmed after at the end of August.
The Outcomes of the Project
- The development of a practical methodology for improving information, access and coordination of health and social care services for people with rare conditions
- A comprehensive evaluation of the effectiveness of this approach
- Improved access to information for patients, families and health and social care professionals, leading to increased awareness and understanding of these conditions.
- Improved access to health and social care services for patients and families, leading to earlier diagnosis, improved care and support.
- The development of a practical tool that will enable patients and families to better understand their condition and take an active role in their care.
- The empowerment of patients and families with rare conditions, by facilitating their direct contribution to improving service provision.
- A written evaluation of the effectiveness of this approach in improving care for patients and families with rare conditions.
- The development of a practical 'toolkit' of resources that can be used to enable other support groups to develop their own Route Map.
- Increased understanding of the mechanisms involved in developing the role of user-led support group and volunteers with personal experience of health conditions in projects of this kind.
- A written evaluation of the project process, including recommendations about how to develop the role of user-led support groups and volunteers in projects of this kind.
Completed Route Maps
A-T Society - Coming Soon
The Toolkit has now been completed and launched, for more information and to view the Toolkit, click here.
The application form has been sent out to all members of Genetic Alliance UK, applications close Friday 20 August. Successful groups will be notified shortly after this date. Selection of the Advisory Committee is currently underway and the final group will be annouced once finalised.
This project has been funded by the Department of Health.
If you would like to obtain further information about this project please email: .
Ten groups have been chosen to be part of this project due to the large number of applications recevied. The groups are as follows:
- The Jennifer Trust for Spinal Muscular Atrophy
- UK Thalassaemia Society
- The Stuart Strange Vasculitis Trust
- Breathetakers Charity
- Prader-Willi Association
- AKU Society
- A-T Society
- Cri du Chat Syndrome Support Group
- ALD Life
- British Retinitis Pigmentosa Society
The Advisory Committee has also been chosen and will be meeting at the end of October. The following are members
- John Deckin, Cystic Fibrosis Trust
- Mike Knapton, Trustee Genetic Alliance UK
- Alison Metcalf, School of Health and Popualtion Sciences, University of Birmingham
- Greta Westwood, CLRN Senior Manager, National Institute for Health Reseach (NIHR) Comprehensive Clinical Research Network (CCRN)
- Marion McAllastair, Genetic Counsellor/MRC Research Fellow, NOWGEN
- Jo Grey, CEO AMEND
All ten participating groups met in London on 25th November to discuss and share ideas for the project. Each group provided a short update on where they are at with their Route Map and common obstacles, issues and proposed solutions were discussed. All attendees came away with new ideas and enthusiasm for the project. These meetings will now become a regular opportunity for the groups to get together and share ideas.
- The first draft Route Map has been finished by The Stuart Strange Vasculitis Trust, a great effort by the team. A few other groups are looking to have drafts done by the middle of the month.
- More workshops have happened before Christmas, with further workshops being planned for the next couple of months to gather more information. Surveys are also being sent out to families and clinicans and being analysed to help inform the development of each Route Map.
- Actions as suggested by the Advisory Committee have been actioned, with a tagline for the project currently being developed and the Evalaution Plan has alos been approved.
- The first part of the evaluation has now begun with the help of patients and families as well as the project leaders at each patient organsiation.
- A tagline/branding has now been created to support the name of the project and provide more information about the project. The tagline is now Empowering. Informing. Caring. This sits well with the Genetic Alliance UK branding as well as informing people what the project is about.
- A definition of what a Route Map has also been created, this is:
A Route Map is defined as a comprehensive, living guide which will signpost the way to health and social care for patients and families to help improve access to information, leading to earlier diagnosis, improved care and support. Route Maps will also benefit health and social care professionals providing them with information to enable them to work in conjunction with patients and families to plan for their care.
- Two more Route Maps have been drafted now, Breathtakers Charity and RP Fighting Blindness have both created online versions of what their Route Map will look like and are now in the process of filling in the information before sending it out to their members for review.
- The Advisory Committee held their second meeting in March, further progress was made in relation to the evaluation of the plan. One member has resigned due to a change in work circumstance and potential new members have been approached about joining the committee.
- For more information about this project, please contact Jessica Burke (Project Manager) on 020 7704 3141 or .
- The ten Route Maps are due to be completed at this end of this month so the groups are putting the finishing touches on their Route Maps. The standard of the Route Maps has been impressive and they have all taken the original idea and created fantastic resources that will benefit their members now and for many years to come.
- The Route Maps are due to be launched at our annual conference in July, keep an eye out on the website and newsletter in the next few weeks for more information. In addition to the launch, we will also be promoting the project through our partners and networks. Each organisation is also planning their own launch and promotion to ensure that these Route Maps go far and wide.
- The toolkit is is really taking shape now based on the experiences of these groups. We will also be looking for a couple of our members to help us pilot the toolkit to create their own condition specific Route Map once that has been completed before it goes live. If you are interested in participating in this, please do get in touch with me on .
The pilot groups launched their Route Maps at our Annual Conference on Monday, the launch was hailed a success and feedback has all been poistive. A few of the members spoke to delegates about their experience of developing their Route Maps and we had some great questions from the audience. Each Route Map was displayed in the breakout room on iPads and the groups got to showcase their work. The stand was surrounded by interested parties during all the break times. The focus now moves on to promoting their Route Maps and completing the toolkit so it is ready for others to use. The toolkit will be launched later in the year, don't forget to get in touch if you are interested in hearing more about it.
See below for links to the completed Route Maps.