Hi, and Happy New Year to everyone! I hope it's a healthy one for each of you.
I'm sure you're aware that over the last few years the Society has been focused on establishing Centres of Excellence for the treatment of Behcet's. We were delighted to be successful with this goal in April 2012 and although there remains a considerable amount of work to do to ensure the Centres deliver to our vision, the Society now needs to focus on other projects that would benefit you, our members.
We've been successful in achieving or starting the following::
•Centres of Excellence – established in London, Liverpool and Birmingham in April 2012
•Specialist Nurses – each of the Centres of Excellence has now appointed a specialist nurse, so this project has been achieved
•Formation of Support Groups – the Support Workers we have in each of the Centres will organise and coordinate new support groups going forward.
•National Database of Behçet’s patients – this will be facilitated via the Centres who are all having a common database so that information can be shared.
•Patient advocate for newly diagnosed patients – the Support Workers will fulfil this role in each of the Centres.
•Research (general and specific) – with the Centres having a cohort of patients, it is hoped that further research will be conducted both at the Centres but also at other hospitals who will now have a patient resource they can call upon.
•Benefits advice and assistance – again part of the Support Workers role in each of the Centres.
•Network for younger members / parents of younger members – we have an informal parent group which provides telephone support to each other. It is also something we’re trying to progress via the introduction of our Junior member so we can understand where and how many children are affected in the UK. When we have a clearer picture of the situation, it is something we would be looking to our Support Workers to coordinate.
So you can see from the above list, we’ve been very successful over the past few years and my thanks go to Chris, the Trustees and volunteers who have worked tirelessly to achieve our goals.
At the start of this New Year, we need to ensure we have the right focus and projects to represent our members. So what projects would you like to see us tack that are most important to you?
We have a Trustee meeting to share our ideas on March 16th and will also be seeking ideas from our Medical Advisory Panel too. We’ll consider all the ideas we’ve received by that date, although you’ll understand we may not be able to take all of them forward.
Please send your ideas together with a brief explanation of why they’re important to you in the usual way – email email@example.com or write to our Admin office.
Myself and all the trustees look forward to hearing from you and to another successful year for the Behçet’s Syndrome Society.