A Group of ophthalmologists (including Nick Jones, who has been very helpful to BUS in the past) and optometrists from the Royal Eye Hospital in Manchester have undertaken a vision related quality of life and employment survey on working age patients with chronic uveitis who are taking immunosuppressants (most of us with Birdshot take immunosuppressants).
Their findings are that, those whose vision had deteriorated to the extent that they were not able to drive, were the ones who were more likely to have a poorer quality of life.
Their conclusion is that chronic uveitis, even when well controlled, can have substantial effects on a person’s social and psychological health, and can lead to difficulties at work.
This is confirmation of what we have heard from many of you and, interestingly, the survey also suggested that work can be put at risk because, for example, patients have to take so much time off work visiting NHS establishments for tests, appointments, monitoring, etc.
Find the write up on this survey at:
We have long argued that we need a more coherent approach to Birdshot and we need services built around us, rather than trying to fit in to an NHS that often requires us to spend several days a month in hospitals and other health establishments.
Please, please remember to complete our own Quality of Life survey, if you have not already done so. This information will help us argue our case more strongly, and hopefully help us get more co-ordinated services.