This is the abstract for the poster that trainee ophthalmologist Nik Koutroumanos presented at the London, Kent, Surrey and Sussex Deanery Trainees conference last week.  It describes what happened at the Birdshot Day  and it caused quite a lot of interest there among the young doctors  who will have gone away from the conference much more aware about our particular rare condition.  There is great  value in educating future ophthalmologists, who are not yet commited to a subspecialty area of uveitis and who will be carrying the knowledge of Birdshot to the corneal, vitreoretinal and paediatric eye clinics that they will inevitably become involved in. Thanks Nik for helping to spread the word.

Purpose: Birdshot Chorioretinopathy (BCR) is a rare, chronic, poorly understood, bilateral posterior uveitis, which results in loss of visual function. The disease and its treatment have dire effects on quality of life. The aims of the project were 5 fold: 1) To reduce the sense of isolation of patients with BCR, 2) to raise the profile of the disease 3) to allow a two-way exchange of information between patients and professionals, 4) to obtain a better visual outcome and 5) to provide a base for research.

Methods: A Birdshot Day was organized by founders of the Birdshot Uveitis Society along with a team of healthcare professionals, public-engagement and audio-visual specialists. What patients wanted was the focus of the team’s efforts. The event allowed for extensive networking and exchange of ideas, talks by specialists and patient representatives and ‘Question & Answer’ sessions which addressed patients’ concerns. Structured anonymised questionnaires and formal interactive evaluation techniques were used to fully evaluate the success and short and long term impact of the day on both patients and professionals.

Results: 50 Patients & 26 supporters joined 50 healthcare professionals for the Patient Day. Data analysis demonstrated a significant improvement in patient knowledge (P<0.001). Results showed that the priorities of patients and clinicians were not necessarily the same. Whilst drug side-effects were deemed the major problem in terms of patients’ quality of life (55.8%), BCR patients prioritised research into aetiology (47.8%) in preference to research into better medication (31.8%). There was evidence that patients greatly valued meeting fellow sufferers (P<0.001). Results strongly suggested that patients’ sense of isolation was significantly reduced and the number of ‘hits’ on the BUS website in the 3-weeks following more than doubled to 67,000. To date, 4 of our 5 aims have been achieved.

Conclusions: We believe that this level of patient engagement should be encouraged. The Birdshot Patient Day proved a success. It has led to better understanding between patients and professionals. Patients have successfully directed and engaged into future research into their condition and future Birdshot Patient days are planned.

After the conference , Nik told us that  he found that many trainees  at the conference were  greatly interested in the concept of a patient day for a rare condition and he  also thought that it was most valuable to  be able talk to trainee ophthalmologists about the significance of involving patients  in research.

We look forward to results.

This is an important message especially for members who attended our First Birdshot Day.

We have just emailed out our 6 month post evaluation feedback survey.    If you have not received yours, please check your spam and retrieve it, and if it’s not there, please tell us straight away! Continue reading →

February 28th, 2011 was rare disease day. Actually, rare disease day is, of course, February 29th, but as it’s not a leap year this year, we held it on the 28th. Continue reading →

Sylvain Mignon www.horus-birdshot.fr has set up a Birdshot Foundation in France.  He is raising money for Birdshot research in Paris.      He told us about this television news item from yesterday’s news round up, which if you speak french  or are interesed, you can view  here.  It is about  three and half minutes into the video clip.

http://www.pluzz.fr/jt-local-19-20—champagne-info-2011-02-17-18h50.html

Premier reportage télévisé sur la maladie de Birdshot et sur HORUS BIRDSHOT – le rportage démarre apres 3mn30 d’émission et dure 2mn, merci de vos commentaires.

For English people : first program about the birdshot disease on french TV and specialy on the Horus Birdshot society , in french of course – thanks for any comments.

JT Local 19/20 – Champagne Info

www.pluzz.fr

Toutes les informations de votre région.

Rea and Annie, met with the consultants who we are working with to discuss our future research network and the projects that they  will undertake.

This is a slow process but we are working hard to get this off the ground.

Below is a picture of us on Monday, when we met.  (left to right: Mark Westcott, Miles Stanford, Narciss Okhravi, Rea  Mattocks and Annie Folkard.) More about the projects we are trying to get off the ground later….