Newly blind left to cope alone

Tens of thousands of people in the UK are not being offered the vital emotional and practical support they need when they start to go blind (1).

  • Almost half (47 per cent) of all eye hospitals in the UK do not offer any support to people who are going blind
  • Many support roles that do exist are at risk of losing essential funding and RNIB is urging NHS and other organisations to protect funding for sight loss advisers
  • Less than one in ten (eight per cent) people who lost their sight were offered formal counselling after they found out they were losing their sight
  • Nearly a quarter (23 per cent) of patients leave the hospital not knowing what eye condition they have
  • Public called on to sign petition calling for more sight loss advisers.

Research by RNIB has found that only 218 of more than 400 eye clinics and hospitals in the UK (53 per cent) have any support staff available to patients to talk to after their diagnosis (2).

A new report released today (Tuesday 15 April) by RNIB, 'Hanging by a thread', also reveals just how precarious funding is for existing sight loss adviser roles as many of the services have no guaranteed funding after April 2015.

Sight loss advisers offer support and adviceSight loss advisers

Sight loss advisers offer emotional support and practical advice to people who are losing their sight. They help people understand their eye condition and explain how to take treatment that might prevent further sight loss. Based in eye clinics and hospitals, sight loss advisers are a vital link to services such as counselling, workplace support and rehabilitation, so that people can adapt to life with sight loss whilst remaining independent.

The report also highlights that eye clinics are full to capacity, with medical staff under huge strain to diagnose and treat patients. They do not have the time to discuss with patients how to manage their condition and what support is available. Research suggests that nearly a quarter (23 per cent) of patients leave the eye clinic without even knowing the name of their eye condition let alone what their future might look like. Less than one in 10 patients were offered formal counselling to help them deal with their diagnosis (3).

Funding the posts

RNIB is now calling on the NHS and other funders to defend the posts of existing sight loss advisers and is urging the public to sign its petition calling for every eye clinic to have access to a sight loss adviser by 2019 - the end of the charity's new five-year strategy (4).

It changes your life when you’re told, "you're going blind and we may not be able to do anything for you".

Liz Wick, 51, Sheffield

Liz Wick, 51, from Sheffield, said: "It changes your life when you’re told, "you're going blind and we may not be able to do anything for you". When I was first diagnosed I'd just separated from my husband, my son was 14 and I didn't know what the future held for me. I had lots of worrying thoughts. "Could I be a mother? Could I be a worker? Could I still be a friend to people?" I couldn't cry at home so I used to get into work, shut the door and cry for about an hour to get it out of my system.
 
"With hindsight, you think, 'Why didn't you ask more questions about your treatment or about talking to someone?' but all I can say is I just didn't. I suppose I was in shock. To have had someone there, ready for when I wanted it all explained to me, would have been amazing." Read more about Liz's story on our "I am here" appeal page.

Adapting to life

Sight loss advisers ensure that patients are referred to local services which can help them adapt to life and can assist with providing accessible information and completing Certificates of Visual Impairment. They can also provide invaluable support in dealing with the psychological adjustment to life as a blind or partially sighted person. The emotional impact of sight loss can be profound. Depression is significantly higher amongst blind and partially sighted people and general wellbeing is considerably lower.

RNIB's CEO, Lesley-Anne Alexander CBE, said: "Every 15 minutes someone in the UK starts to lose their sight but people do not always get even basic emotional and practical support at this critical time. Being told you are losing your sight can be extremely traumatic to come to terms with, and everyone reacts differently.

No one should have to face sight loss alone

No one should have to face the prospect alone or without the support they need to help them through the situation. This is why at RNIB we will be focusing our efforts on making sure more people are reached when they need us."

In the UK, 100 people begin to lose their sight every day and by 2050, it is predicted that the number of people affected by sight loss will double to around four million. Demand for eye clinic services which are already under strain will significantly increase. Sight loss advisers can help to ease the pressure on ophthalmic staff whilst helping patients to adapt to a future with sight loss.

To find out more about the campaign visit our "I am here" web page or sign the petition online to call for more sight loss advisers.

Watch our video

Notes to editors

For more information contact RNIB's Public Relations team on 020 7391 2223 or pressoffice@rnib.org.uk. For out-of-hours enquiries call 07968 482812.

The following collateral is available:

  • Case studies – various ages, male and female
  • RNIB spokespeople
  • Cut video packages and loosely edited rushes featuring RNIB spokespeople, sight loss advisers and case studies
  • Regional breakdown of figures
  • Key statistics and FAQs
  • General sight loss information and statistics
  1. In 2012/13, 16,121 people used early intervention services by the RNIB group of charities in England, Scotland, Wales and Northern Ireland. We estimate that between 54,000 and 81,000 people require early reach support each year (based on numbers of people who are newly diagnosed with significant permanent deterioration in their sight). Source: Estimating the Need for Early Reach Services, RNIB, May 2013.
  2. Source: ‘Early intervention support in eye clinics’, RNIB, 2014.
  3. Source: ‘Network 1000: Access to information, services and support for people with visual impairment. Visual Impairment Centre for Teaching and Research’, University of Birmingham, 2008.
  4. April 2014 sees the launch of RNIB’s new five-year strategy. A key area of focus is 'Being there'. Right from the first diagnosis everyone affected by sight loss, including families and friends, need advice and practical and emotional support. We will focus on making sure more people are reached early so that no one has to face a future with sight loss alone.
  5. Sight loss advisers are often referred to as Eye Clinic Liaison Officers (ECLOs) in eye hospitals.
  6. About RNIB - everyday around 100 people in the UK start to lose their sight.  There are almost two million people in the UK living with sight loss. RNIB is the leading charity working in the UK offering practical support, advice and information for anyone with sight difficulties. If you, or someone you know, has a sight problem RNIB can help. Call the RNIB Helpline on 0303 123 9999 or visit rnib.org.uk

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