It changes your life when you are told 'You are losing your sight and there's nothing more we can do'. Imagine hearing this news and then being left to get on with your everyday life without any extra support.
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. No one should have to face the prospect alone or without the support they need to help them through the situation.
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. The research 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 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.
This is why RNIB is calling for every eye clinic in the UK to have access to a sight loss adviser by 2019. We are also urging the NHS and other funders to defend the posts of existing sight loss advisers, to ensure that as many newly diagnosed people as possible receive the support they need.
Over the past 18 months RNIB has been consulting on its new strategy and asking its members and other blind and partially sighted people what they need and want for an independent life. Alongside requests for a more inclusive society, increased benefits, and help maintaining education and employment, a key ask was that more support be made available at the time of diagnosis.
As such, 'being there' is a key element of the RNIB Group's new strategy. Working with partners, we aim to ensure blind and partially sighted people get the advice, support and services they need to make the most of their lives at the time when they need it most.
The best way of illustrating just how important sight loss advisers are is to listen to the words of people who have been through it themselves. Liz Wick, 51, from Sheffield, explains: "When I was first diagnosed, 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?'
"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."
Amy, who lives in Newcastle, was luckier and was offered support. She said: "Because the cause of my sight loss was not easily identifiable, I was left in limbo and did not know what would happen. I went home where I become steadily anxious and frightened for my job. I then heard about a sight loss adviser and went to meet her. For the first time in months I had hope and a way of enabling me to do things independently without having to rely on others and that was thanks to the sight loss adviser."
We recognise that eye clinics are full to capacity, with medical staff under huge strain to diagnose and treat patients, and we do not expect the consultants to do this role themselves. They often do not have the time to sit down and discuss with patients how to manage their condition and what support is available as they are just too busy. Research suggests that nearly a quarter (23 per cent) of patients leave the eye clinic without knowing or being able to remember 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.
This is why the role of the sight loss adviser is so important.
This is why at RNIB we will be focusing our efforts on making sure more people are reached when they need us. Together we will support many more people to make the most of their lives, influence society to include blind and partially sighted people, and work with partners to raise awareness about sight loss.
The general public can get involved too by signing our petition calling for more sight loss advisers. Visit www.rnib.org.uk/iamhere to find out more about the campaign and sign the petition to call for more sight loss advisers.