Update on Birdshot Day

Narciss, Rea and I have been busy reviewing all the video footage that was taken at the Birdshot day with Alan Lacey , our wonderful audio visual specialist. Alan has managed to capture most of the lectures and talks and we also have some great interviews of people talking about their experience with Birdshot. We would like to thank all these people for giving so freely of their experiences to make these ‘vignettes’ such an amazing learning opportunity for our health professionals. We would also like to thank our team of volunteer interviewers who did such a brilliant job – Mikael Porath-Petersen, Lizzie May and Kevin Wooding – they were truly professional and we cannot believe that they have never done this before!

We also have interviews with some of the professionals who attended the Day, including low vision specialists (Optima Low Vision UK), Guide Dogs for the Blind and Rea’s brilliant chiropractor Mikael Porath-Petersen. They are all truly great.

We plan to stream some of the interviews as short audio clips from the website and are working hard to edit them and to select the highlights. We can’t wait to share them with you.

All the material from the Day will be put together into a training DVD which we will then distribute to UK health authorities and hospitals . The purpose of the video is to raise the profile of Birdshot and help healthcare professionals understand the condition, diagnose it speedily and offer appropriate treatment. It will also give healthcare professionals a real insight into what we, as people with Birdshot, experience when we are diagnosed and what we have to live with when we receive treatment. It will also help to engender interest in the proposed research network that is being set up as a result of the Day.

In order to keep the costs down we will produce a limited number of DVD’s, but we would like to be able to offer it to registered members if they are interested in having a copy. We are mentioning it now, simply to try and gauge the level of interest. We would propose to sell it for £10.00. Please do email if you would be interested in receiving a copy when it has been finalised so we can judge how many extra copies to make. Profits from this DVD will go towards funding a future Birdshot Day and Birdshot research. For our overseas members we will post all over the world for a small additional charge.

Of course it wont be as good as actually attending a Birdshot Day – but we promise we are doing our best to make it a professional DVD, and we are hoping to have completed the editing by January or February of 2011.

In the meantime here are some of the reflections from the Birdshot Day and its impact. We had literally dozens of lovely compliments and we are determined to build on this for the future.

Some reflections from Patients

“The day was excellent, and I believe has most likely made a positive improvement to the lives of some of the sufferers, and I guess that’s the best result you can hope for.”

“I can’t thank you enough for Saturday it was so great to finally meet and talk to others who are asking the same questions as me. I can now say that I don’t feel so alone and the day has made me feel more positive for the future, can’t wait for next year!!!!”

“Thank you again for all the hard work you have done to not only educate all of us but to also bring together a community where we can share in each others experiences and not feel alone.”

“It was good to meet fellow sufferers and be able to empathise.”

“I no longer feel so like a ‘forgotten ‘ patient – I feel I now have a future, and more importantly, that anyone related to me has a real chance of being diagnosed and treated effectively, should they get Birdshot.”

From a Health Research Manager….

“I am so glad I came! I now have a new vision.”

“I can’t begin to tell! I think we ought to set up a series of meetings like this involving patients, patient groups, clinicians and researchers.”

From a Specialist nurse….

“The Birdshot Day was highly extraordinary and an opportunity for us healthcare professionals to reflect and gather our thoughts pertaining to our patients.”

Annie and Rea

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