Centres of excellence
An ambitious programme to fund specialist centres to which Behçet's patients can go to be seen by the various consultants in one place, thus avoiding many journeys and multiple appointments.
Research (general and specific)
Research into the genetic reasons for Behçet's, what causes it and how it can best be tackled. This is a massive project and will cost many thousands to achieve.
Specialist nurses
Appointment of specialist nurses trained in the needs of Behçet's patients to work at the centres of excellence, to assist consultants and who can take their skills and expertise into the field to help patients in their own homes.
Assistance to and expansion of support groups
There is much call for patients and carers to meet to exchange ideas and offer mutual support. These groups will vary from those meeting in each other's homes to those who lobby hospitals and doctors to gain improved services. These groups need support to start and hand holding to get underway. A nationwide initiative is planned.
National database
At present there is no national database holding details of all Behçet's patients. Such a database would help research and diagnosis for doctors throughout the UK.
Medical awareness campaign
It is a sad fact that most Behçet's patients suffer for many months whilst a diagnosis is confirmed. We would like to undertake a nationwide information drive to make doctors aware of the symptoms and to offer them help with diagnosis through a medical section of our website.
Patient Advocate for newly diagnosed patients
Linked to the specialist nurse, these people would offer to support newly diagnosed patients through those first difficult months, offering counselling and information to help them make informed choices and regain their confidence and self-respect.
Benefits advice and assistance
A major area of concern for many patients is the traumatic process of claiming Disability Living Allowance and going through the various appeal process that seem normal with this difficult-to-get benefit. Because Behçet's is a rare disease, appeal panels are not making informed decisions regarding our patients' needs, so appeals are failing and our members suffer. We wish to offer sound benefit advice and support members directly through the appeals process.
Network for younger sufferers / parents of younger sufferers
Young people are being diagnosed with Behçet's and face a lifelong fight to control the symptoms. Their needs are clearly different from those of adults, and we would like to set up a network of young patients and carers who could offer support and advice to those undergoing traumatic symptoms and the shock of diagnosis.
