Press release: Retina UK publishes unique insight into the experiences of people with inherited retinal conditions

Posted on: Friday 13 September 2019

Evidence of the real-life experiences, challenges and expectations of almost 1,000 people affected by inherited sight loss conditions have been published by national sight loss charity Retina UK.

The charity presented some of the key findings from its 2019 Sight Loss Survey when it was invited to represent its community during the recent NICE consultation for the gene therapy Voretigene neparvovec, (Luxturna). It was announced on 3 September that NICE had recommended the treatment on the NHS – the first for an inherited retinal dystrophy.

Retina UK says the information its community provided through the survey enabled it to put very strong evidence to NICE’s decision-making committee.

Chief Executive, Tina Houlihan said: “We were able to present the decision-making committee with a number of findings on the burden of disease from our recent Sight Loss Survey, completed by almost 1,000 of our community. The committee’s evaluation document specifically quotes our survey’s findings on mental health impact and concludes: ‘The committee acknowledged that RPE65- mediated IRD is a rare, serious and debilitating condition that severely affects the lives of patients, families and carers.’”

Luxturna is the first treatment available for an inherited retinal dystrophy. It is a gene therapy for the treatment of Leber congenital amaurosis type 2 (LCA2) and severe early-onset RP caused by mutations in a specific gene called RPE65. The survey respondents told us that their condition has a substantial effect on mental health and emotional wellbeing, with 92% reporting that their vision loss had an effect on their mental health.

  • Key findings from Retina UK’s 2019 Sight Loss Survey include:
  • Loss of confidence, anxiety and stress are the biggest emotional or psychological impacts of sight loss. Only 8% say they’ve experienced no impacts like these.
  • Over half (53%) say their sight loss has a severe or very severe impact on their quality of life.
  • The experience of being diagnosed has improved over the past 20 years but only around one in five are told about support available from Retina UK.
  • Almost two in three respondents (63%) receive ongoing care from an ophthalmologist, and most (77%) are satisfied with the care they receive.
  • The most useful services are: benefits advice; mobility training; access to work schemes; and counselling. Benefits advice and counselling also appear on the list of services hardest to access.
  • Respondents access a wide range of aids, but many would like to access more assistive technologies such as electronic devices and computer apps.
  • More than half (58%) are aware of clinical research into their type of sight loss, and 20% have participated in research.
  • Only 15% know the gene implicated in their condition.
  • Respondents mostly agree Retina UK is approachable, trustworthy, and ambitious on behalf of people with sight loss. 80% rate our services as ‘excellent’ or ‘good’.

Note to editors

Retina UK is a national charity (registered number 1153851) working for people with inherited sight loss. We fund medical research to understand these complex conditions and speed up the search for treatments and we provide information and support services to help more people lead fulfilling lives.

Retina UK has funded more than £16 million of research into inherited sight loss conditions in its 43-year history.

Retina UK partnered with Self Comms to conduct its 2019 Sight Loss Survey in spring 2019. The full Retina UK sight loss survey report is available on the Retina UK website in Word, PDF and audio formats:

Case studies are also available along with interviews, including our CEO and members of our community.

For more information, please contact Jane Russell, Communications Manager, 01280 821334 / 07719 967368