Projects - Facilitating Networks of Expertise with Patient Support Groups

The Facilitating Networks Project will address the difficulties that children, adults and families with rare genetic disorders experience in receiving good information and optimal healthcare for their condition.    The project will be a pilot scheme working with three condition areas, grouping some of our smaller member groups together to benefit more than one condition at a time.  The condition groups we will work with are:

Rare dermatological conditions, including Xeroderma Pigmentosum and Tuberous Sclerosis.  An estimated minimum of 2,500 people in the UK have these conditions.

Rare Cancer conditions, including Costello Syndrome and Familial Adenomatous Polyposis of the Colon (FAP).  An estimated minimum of 3000 people in the UK have these conditions.

Rare neurological conditions, including Neurofibromatosis, Rett Syndrome, Cavernous Angiomas and the inherited Ataxias.  An estimated 45,000 people in the UK are known to have these conditions.

These groups of conditions represent rare disorders where support groups are small and inadequately resourced and where there are no clinical networks already in existence.

In total, the project has the potential to improve the information, care and services for approximately 50,500 people with rare genetic disorders in the UK. 

The Aims of the Project

The primary aim of the project is to work with small Patient Support groups to facilitate the development of networks of health professionals in order to improve information, care and services for patients and families affected by, or at risk of, rare genetic disorders.

Through the development of networks of expertise the Project will:

• Improve access for children, adults and families with rare genetic disorders to clinicians with experience and understanding of their condition.
• Improve communication between healthcare professionals in relation to patients with rare genetic disorders.
• Increase information available to patients and families by involving the experts in the clinical networks when developing patient information.
• Improve the coordination of care for children, adults and families with rare genetic disorders.
• Increase awareness and understanding amongst healthcare professionals by asking the clinical networks to provide guidelines and publish clinical updates and review papers.
• Explore mechanisms for involvement in the commissioning of services.
  Develop a protocol for establishing clinical networks that can be applied to other disorders and groups of conditions.
• Examine the effectiveness of the pilots and benefits and implications for support groups and the families they represent, in partnership with clinicians.

How can you get involved?
We are currently conducting a survey which will examine the ways in which Patient Support Groups are working with clinicians with expertise in their respective conditions. To contribute to our research please follow the link below:
http://tinyurl.com/facilitating-networks-com 
The questionnaire will take you no longer than five minutes to complete and will give you the opportunity to share your views on the potential benefits and drawbacks of Patient Support Groups working with specialist networks.
When we have received a representative sample of questionnaires the information will be collated and compiled in a report highlighting the general themes which emerge. The report will be disseminated to all Patient Support Groups that have taken part and should prove useful for all involved.

If you would like to obtain further information about this project please email krystlegig.org.uk