Stickler Syndrome UK has great pleasure in announcing that at a ceremony held on Thursday 1 December 2016 at the Royal College of Surgeons in London, the Stickler Syndrome Service were commended in the “best team” category. The national Stickler Syndrome Diagnostic Service was a very strong entry with successful patient pathways linked to research and very strong patient support. The judges described the team as ‘very specialist’ and world class.’ It is an excellent example of multi-disciplinary working that can he applied to other areas. They were also the winners in the category of “best MDT team” working in the field of Ophthalmology. The clinic came about as a result of the research and MDT service. In 2011 the Department of Health commissioned the team to provide the now National Stickler Syndrome Diagnostic Service for all patients in England with Stickler syndrome. Health boards access the service via their own commissioning arrangements ensuring that all UK NHS patients have free access to a true MDT service unparalleled anywhere else in the world. This is a great achievement both for Addenbrooke’s and for the Stickler service and I am sure all our members will join me in congratulating the team who work tirelessly on our behalf to improve the time of diagnosis, identify and improve methods of dealing with repeated retinal detachments and continue to research all aspects of this grossly under-diagnosed progressive condition, so that those affected can understand the problems associated with this multi symptom condition and learn to live within its restrictive confines.
We would like to introduce a guest blog section on the website. These blog posts are going to be far from being medical, they are intended to be “By Stickler people for Stickler people”, so if you have anything you would like to write about that you think others with Stickler would be interested in then please get in touch. You don’t have to be a writer, and you don’t have to write pages and pages, ideally a post a week (by a different person each week not the same person!) would be awesome, but even one a month would be great and spread awareness. A sample idea to kick it off would be if any parents out there with teenage Stickler kids would like to write about transition from primary school to secondary school, even better is if they could then convince their child to write a follow up from the childs point of view too! One of the things that came out of the UK conference this weekend I personally noticed was how much everybody was commenting on how much information they got from just speaking with other families. Another series for the blog posts could be “Living with ….” i.e. “Living with limited vision”, “Living with chronic pain”, “Living with hearing loss”. If you know anyone who would be interested please share this post with them. These blog posts will remain on the website and be indexed by Google so will act as a great resource to anyone searching for information on the condition.
Fresh off the back of the UK conference this weekend I would like to ask if any of you who attended would email me ([email protected]) any photo’s you took and don’t mind sharing. I would like to post some pictures of the weekend on the website. If you have any feedback about the conference please email [email protected] we would really like to hear what you thought and any improvements we can make for next time.
All the subsidised places for the Stickler Conference 21-23rd October in Coventry have now been taken, but we do have a few places left at the full price. If you are interested in attending, please contact Wendy on [email protected] ASAP
The good news is that the highly subsidised places at the conference are going rapidly with application forms and payments arriving by with every delivery. Don’t lose out! Get your application and deposit/payment in ASAP. Once all places are taken we will not be able to accept any more applications. Remember the letter sent to you states in the last paragraph that get free musically followers without downloading apps or survey applications will be accepted on a strictly first come first serve basis.
The bad news is that because of the response by members we are unable to offer places to non-members. If you wish to avoid any disappointments in the future please join us by becoming a member.
We are in the process of arranging our next conference which will be held 21st-23rd October 2016. If you are a member of Stickler Syndrome UK you should receive something through the post shortly with more information. If you are not a member now is the clash royale gems time to join and gain member benefits! Click Membership information for details.