As part of the service mapping exercise, The Lauren Currie Twilight Foundation surveyed members to explore their views on the availability and understanding of health information and to understand areas for improvement. 80 responses were received and from those responses 3 objectives were agreed using an impact/effort matrix. Those were:
- -Provide information about support groups and third sector organisations.
- -Provide explanations about condition/treatment at time of diagnosis
- -Promote shared decision making
As part of this survey only 30% of patients reported receiving information on 3rd sector organisations. This project aims to improve the percentage of patients who received information on third sector organisations.
Information on organisations are below, please click on the logo for further information.
Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We strive to secure the best care for all Behçet’s patients and assist their carers, parents, and relatives.
The Lauren Currie Twilight Foundation was founded in 2010 as a memorial charity for 15-year-old Lauren Currie, whose missed diagnosis of GPA led to her untimely death.
LCTF provides guidance and support for patients with all variants of Vasculitis in the form of support groups, wellbeing courses, leaflets, webinars and guidance videos. It has also funded research and e-learning modules for health professionals, having previously formed partnerships with RCGP, BSR and Renal Association.
PMR-GCA Scotland provides information and support to people with the debilitating conditions Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA). We are an established source of help on the internet and through GPs and rheumatologists referring patients.