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RCOphth Lay Advisory Group strongly criticises NHS England’s decision to deny sight saving therapies for patients with severe refractory uveitis

7 August 2015

The Lay Advisory Group of The Royal College of Ophthalmologists strongly criticises NHS England’s decision of 2 July 2015 to not routinely commission adalimumab and infliximab for adults and children with severe refractory uveitis.

England is now the only country in the UK that denies access to anti TNF therapy for severe refractory uveitis in adults and children.  These therapies are widely available across the developed world and the Lay Advisory Group cannot understand why NHS England should ignore early evidence coming from specific trials such as the SYCAMORE trial demonstrating the efficacy of these therapies.  In fact, the SYCAMORE trial stopped recruiting early as adalimumab was shown to be overwhelmingly effective and it was deemed unethical to continue randomised trials in which some children would be receiving the placebo and needlessly losing vision.

The Lay Advisory Group believes that the patient and carer voice has not been adequately taken into consideration when making this decision, despite NHS England’s commitment that ‘Public Voice is about ensuring that the views of patients, carers and the public are heard and are able to influence NHS England’s decision-making.’

We feel that by denying access to these sight saving therapies, children and adults suffering from severe refractory uveitis are likely to unnecessarily lose their vision.  In times when we are all being asked to make efficiencies and savings, this is a short-term decision that has a longer term impact on public spending; these patients will inevitably require more community, social and clinical care in the future and will have an increased probability of mental health issues as they come to terms with their loss of vision.

The Lay Advisory Group supports the campaign by RNIB, Birdshot Uveitis Society, Olivia’s Vision, Fight For Sight and Genetic Alliance/Rare Disease UK.  The campaign is seeking to prevent avoidable loss of sight for patients by asking NHS England to reverse its decision. In particular, the Lay Advisory Group supports the petition started by Olivia’s Vision (a charity for children and adults with uveitis) asking NHS England to reverse its decision.  This petition now has more than 10,000 signatures and the Lay Advisory Group urges everyone to sign it.  It can be found at:

http://www.change.org/p/nhs-england-campaign-to-make-nhs-england-reverse-its-decision-of-2-july-2015-to-remove-funding-for-infliximab-and-adalimumab

For more information about the campaign, please contact Rea Mattocks, Lay Advisor member at The Royal College of Ophthalmologists at Rea.Mattocks@gmail.com

About The Royal College of Ophthalmologists
The Royal College of Ophthalmologists (RCOphth) is the only professional body for eye doctors, who are medically qualified and have undergone or are undergoing specialist training in the prevention, treatment and management of eye disease, including surgery. As an independent charity, we pride ourselves on providing impartial and clinically based evidence, putting patient care and safety at the heart of everything we do. Ophthalmologists are at the forefront of eye health services because of their extensive training and experience.

RCOphth received its Royal Charter in 1988 and has over 3,500 members in the UK and overseas. We are not a regulatory body, but we work collaboratively with government, health departments, charities and eye health organisations to develop recommendations and support improvements in the co-ordination and management of hospital eye care services both nationally and regionally.

About RCOphth’s Lay Advisory Group
The RCophth’s Lay Advisory Group has members, who have no background in health or eye matters, members who are or have been eye patients, members who have a link to eye or health related organisations.  The group includes clinician members of RCOphth including the President. While the Lay Advisory Group is not a patient lobby group it expresses views based on public and patient experience of health and eye care services.

The Lay Advisory Group is an integral and influential group within RCOphth and supports decisions on policy and guidance to ensure that the patient’s voice is always heard to improve and maintain patient safety and care.

Read Lay Advisory Group member Rea Mattock’s case study on being diagnosed with Birdshot Chorioretinopathy.