What’s it like to be told you’re losing your sight?


Liz: I was in complete and utter shock. Stevie: Every day, 100 people in the UK start
to lose their sight. Liz: I was scared, I was very frightened. Stevie: We know that up to a quarter of patients
may leave the eye clinic without knowing the name of their eye condition, leaving them
unclear as to the future and what that brings for them. Liz:
I’m Liz and 10 years ago, I was diagnosed with macular degeneration. When I was first
told about the condition that I had, I didn’t really know what it meant. I didn’t really
have anybody who could fully explain to me what it was. There were no reassurances that
I felt were being given to me. Either by the hospital staff or even friends around me. Stevie: My name is Stevie Johnson. I manage
the Eye Clinic Impact team at RNIB. We estimate that there are around 400 eye clinics in the
UK and about half of those has some form of support service available to people. Now that
can mean anything from a full time sight loss adviser or ECLO but it can also mean someone
part time and not all clinics are covered all of the variety of things can happen. For
some people it can happen overnight, for others its a gradual process but for all of them
it’s life-changing and can havea profound effect. Liz: I was very aware that I had changed as
a person and it took me a while to find myself again. For me, at the point of being told
this, I was in such shock, it took a while for it to sink in. But I did need somebody
to give me emotional support. Having somebody to have said to me ‘once this has sunk in,
once the treatment is underway, once we know how your eyes are reacting and how things
are progressing, these are the options available to you , for going to work, Access to Work
can do this we can get you a taxi to and from work, we can get specialist equipment in for
you to help’ all of that would have been welcomed with open arms. But I didn’t have that and
I had to find all that out for myself. Stevie:
Most sight loss advisor posts are funded by a mixture of local authority and local voluntary
organisation funding. These are often spread across lots of little pots of money. This
is not sustainable and as a result a lot of these posts are under threat. Liz:
I hope that for future patients who have been told the devastating news that they are losing
their sight, that they have the access to the ECLO or sight loss advisers on the department
on the ward or clinic, wherever it is that they are – that they can access this practical
and emotional support. Stevie Johnson:
By 2019, RNIB would like every eye clinic to have access to a site loss adviser or ECLO
service so that everybody can receive that vital emotional and practical support that
they need. Voiceover: RNIB.org.uk/iamhere

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