Olivia’s Vision was established in 2010 to provide information, support and advice to anyone affected by inflammation within the eye known as uveitis.
The disease can be blinding because the inflammation damages structures inside the eye that are essential for good vision. It is considered a rare disease affecting up to 52 people per 100,000 population in Europe and the USA. For children, the figure is lower with up to 6 per 100,000 population affected. Nevertheless uveitis is the fourth most common cause of blindness in the working age population of the Western world and accounts for 10% of preventable blindness.
The charity is named after Olivia, the now teenaged daughter of the Trustees, Nick and Nick Davis On the Olivia’s Vision website, telling her story, six years on from Olivia’s diagnosis, Nicki writes:
“Olivia was and is the fighting force behind the reason for setting up this charity. Nobody should lose their sight because their doctor doesn’t ‘believe’ in taking an aggressive stance. Nobody should lose their sight because their CCG (Clinical Commissioning Group) won’t fund a particular drug. Nobody should feel they are alone trying to battle a disease nobody has heard of.”
Also on the website, the charity provides information about uveitis, complications, treatment choices, and gives web links to more detailed resources written by health professionals and uveitis specialists. The website forums and social media accounts provide a platform to interact with others and ease the sense of isolation and bewilderment experienced by many. The Helpline and email contact provide a rapid response to questions and worries.
Olivia’s Vision explains medical terminology, gives hope by outlining what can be done to preserve or recover vision, provides contact details of the nearest specialist, helps patients formulate questions so that discussion with their ophthalmologist will be informed and sadly, sometimes puts patients in contact with other organisations which will help when vision has been irreversibly impaired, or they are having trouble maintaining their employment. The Charity’s work extends to the provision of information and support for those enrolled in clinical trials.
Olivia’s Vision also works with NICE and NHS England’s Specialised Ophthalmology Service in order to secure better care and the funding of newer therapies for uveitis patients.During the summer of 2015, Olivia’s Vision fought to reverse a decision made by NHS England in July 2015 to deny new patients sight saving anti-TNF drugs. The charity placed uveitis in the public eye collecting the support of thousands of people through an online petition and arranging for patients and parents to be interviewed by journalists and television news reporters. Nicki and Olivia Davis started the media campaign by giving an interview on Sky News. The campaign was successful in securing Adalimumab for children with severe refractory uveitis. The charity continues to fight to ensure the same success for adults and to have infliximab returned to the treatment options for both adults and children.
Olivia’s Vision funds two Senior Clinical Fellows that rotate 6-monthly between by the Birmingham and Midland Eye Centre (Professor P.I. Murray) and Bristol Eye Hospital (Professor A. Dick) and a Specialist Paediatric Nurse also at Bristol Eye Hospital.
Professor Phil Murray
MBBS, DO (RCS), PhD, FRCP, FRCS, FRCOphth