NIHR (the National Institute for Health Research) funds INVOLVE which promotes active public participation in NHS, public health and social care research to improve the way that research is prioritised, commissioned, undertaken, communicated and used. The BUS/Moorfields partnership was invited to attend the 2010 INVOLVE Conference in Nottingham to display a poster and talk about the Birdshot Day. Here is a picture of the poster! And a photograph of Narciss Okhravi, Rea and Nik Koutramanos in front of it.
The conference was attended by many small charities, similar to ours, and some health staff. What was particularly striking was that the BUS partnership with Moorfields attracted real interest as it seems to be pretty unique. We have a partnership that has already led to some effective outcomes (the Birdshot Day where people with Birdshot and professionals exchanged information and learnt from each other) but we also have the foundations for some real research to get underway.
People were impressed by the power of a small charity like ours, particularly as it deals with a rare disease, where patients often struggle to gain effective access to diagnosis and treatment, because the disease is not well understood.
BUS has a growing database of people with Birdshot, and without this database, good research would be much harder to carry out as researchers would not be able to access enough people! Well, Annie and I (Rea) already knew how powerful BUS has been in raising the profile and lobbying for resources and treatment, but we are really happy to have that confirmed by INVOLVE. So, for all of you who have become members of BUS, please note how effective your membership has been and how powerful we, as a group of Birdshot sufferers, are becoming.
It was really helpful attending the conference, and we made some great connections. INVOLVE has asked us to write an article for them, as they were so impressed by the partnership. Narciss and Rea are meeting the Chief Executive of AMRC, Simon Denegri to see if he can help us begin to raise money for further Birdshot Days and further research. AMRC is the Association of Medical Research Charities, and we are hoping to gain some real help and information from this meeting.