RNIB Community Views: accessing eye care services

Celia, Hackney: My name’s Celia, I’m 45
years old and I’m from Hackney in London. Out of all the senses, it’s the one I’d
miss the most. My sight is incredibly important to me, imagine
not being able to see colours. Aftab, Bradford: My name is Aftab. I am 45
years old and I live in Bradford. If you didn’t have your eyes you wouldn’t
see the beauty of life or the colours of life. David Allen, RNIB: I’m David Allen and I’m
Head of Sight loss Prevention for RNIB. Prevention of avoidable sight loss is one of RNIB’s key
strategic priorities, and in 2011 we commissioned some qualitative
research to identify the barriers to access for primary and secondary care amongst particular
target populations. The research is part of a much wider programme
of work looking to identify key issues for target communities in Bradford, Hackney, Glasgow,
Cwm Taf in South Wales and in West Belfast. What we found from this research was that
there is a sense of fatalism amongst the community. They didn’t really understand much about eye
health, there was very limited community awareness. And worse than that there was a misconception
that they couldn’t do anything about protecting their eyes. Mary, Belfast: My name’s Mary and I’m 63
and I’m from Belfast. For me eye health is about whether you need glasses. You have
to accept what God gives you. Celia, Hackney: Losing sight always comes
in time, if it’s going to happen to you, it’s going
to happen to you. David Allen, RNIB: People tend to think that
sight loss isn’t avoidable and if you have a sight problem it’s going to make you go
blind. We need to challenge this misconception. What was interesting about the research was
it didn’t make a difference if someone had an eye test or not, as to how much they knew
about eye health. Aftab, Bradford: There are no posters or leaflets
to show how to look after your eyes. They should have some sort of course to say how
to take care of your eyes. Or they should have a professional coming
into the community centre to give information on eye care. Derek, South Wales: My name’s Derek, I’m 65
and I am from Rhondda Valley, in South Wales. There is a lack of awareness around eye health,
so not taking preventative measures to look after your eyes is the biggest problem.
The only thing you hear about is contact lenses or laser treatment. Ali, Glasgow: I’m Ali, I’m 41 years old
and I’m from Glasgow. Much is talked about “lifestyle factors”
but it isn’t fully explained for people to make a change.
I get letters from the dentist all the time about check ups, but nothing from the optician.
It’s human nature, we don’t go to look after ourselves until we’re told. David Allen: So what we found out was that
eye test attendance is symptom driven. and that of course means that early detection
is much less likely. One of the barriers we found is the retail
dimension of optometry. People feel under pressure to buy glasses when they do go. They
often ration their attendance, because they can’t afford to go very often, and they viewed
the eye examination as a completely different type of intervention to other medical health
checks. That’s going to have an effect on the treatment
that people are going to be able to receive. Most people go in because
they think they need to get glasses. Celia, Hackney: People do go to the optician’s,
yeah, but when they go, they only get told that they need more glasses, Derek, South Wales: When I can’t see, I’ll
go. I only get tested when I’m having trouble. Mary, Belfast: It’s difficult to get out
of working hours appointment. You make do with what you can afford rather
than what you need or want. Ali, Glasgow: Too much pressure to purchase
glasses, too much emphasis on selling expensive designer frames. I postpone my eye examination,
to manage my costs. Aftab, Bradford: Your eyes are worth it. Sometimes
you have to save up and if other things are needed then it would have to wait. Celia, Hackney: Personally I think it’s
a money making thing. Even if you’re eyes are ok they are still trying to offer you
things to buy. I saw a show on TV that said to make glasses cost 30p. I have to pay £300. David Allen, RNIB: A lot of people also spoke
about having a really positive experience when they go to the optometrist, and what
we found out is that developing trust between the optician and individual was really important
in them wanting to come back again and again. It put people at ease, making them feel comfortable;
making them feel like it was a valued experience from both sides. Aftab, Bradford: The staff are nice and polite.
The optician gives you time. I was quite impressed because I do an eye-check
every year or so and the optician was quite young, but she referred me to Moorfields eye
hospital for a second opinion, and she was clever, because she was right about needing
more treatment. Derek, South Wales: Yeah, I like my local
optician, they do diagrams and explain it all. David Allen, RNIB: In two of our sites we
focused on diabetic retinopathy, and in three, we wanted to look into a bit more detail around
glaucoma and the issues surrounding it. The research showed us that managing diabetes
is really hard work for people. They struggle to keep track of the different
appointments that they’ve got. Sometimes they’re not even sure what appointment they are going
to and why. And in some cases they didn’t even know if they’d been to an appointment. People with diabetes didn’t understand the
difference between diabetic retinopathy screening and going for a standard eye examination.
It can make a real difference as to whether other eye conditions are identified and treated. Aftab, Bradford: There is a link between diabetes
and eyes, they’re like two sisters. If we knew the how and why we could protect ourselves.
The community’s diet makes control difficult – fried food and sweets. Ali, Glasgow: In my circle, people don’t
know about the links between diabetes and eye health. No one really considers watching
their sugars to protect their eyes. Asian people don’t associate that, the link between
diabetes and eye health, they don’t understand the importance of it. David Allen: Many patients find the eye care
system to be fragmented and confusing, and sometimes people are taken off hospital lists
if they don’t attend appointments. And of course that can lead to even bigger
problems and people going blind. Aftab, Bradford: I was in Pakistan, and I
let help service know this, but I still got a letter saying that I did not attend. Celia, Hackney: You need a text message to
remind you about the appointment, otherwise it is too difficult. I have to wait a long time often, a lot of
waiting. And people often leave because they cannot wait any longer. It’s a lot of waiting!
You don’t always see the same person every time at the hospital that’d be nice. But that’s
how it goes. Mary, Belfast: Didn’t know anything about
glaucoma, would have liked a bit more information about treatment options and scenarios. David Allen, RNIB: Poor patient experience
and lack of information are going to be barriers to accessing eye care services.
But on the other side, a much more positive patient experience and continuity of treatment
are going to enable people to engage much more effectively. Derek, South Wales: I had a very professional
service at RGH. The surgeon took me through all aspects of the procedure and made me feel
very comfortable. Celia, Hackney: My optician did have to console
me, and tell me not to worry too much. Glaucoma was not a case of automatically going blind.
She did take pains to calm me down. Ali, Glasgow: We would like more support but
we don’t know what’s available.

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