EyesWise 100 Voices: Georgie’s patient experience story (2/2)

Regular Checks – Continuity Experience>>Georgie Bullen: As soon as I got handed on to a different doctor I seemed to slip
through the cracks a little bit. I’m meant to be seen once a year as a kind of minimum,
just a check up on my eyes to make sure nothing has become active again and no-one has to
step in and try and stop me losing more sight. I was seen in June 2017 and so I should have
been seen June 2018 and I hadn’t actually noticed come the summer of 2018 that I hadn’t
had my routine appointment, just because I was busy. But when I got to August I actually
started thinking that I was picking up on some issues with my eye condition. It felt
like my central vision was just deteriorating and I’d always been told, and it had been
really stressed to me, that if I pick up on any kind of issues that I need to get back
into the hospital and get my eyes checked immediately, because with wet AMD it could
be that I would need to have injections and I would need to have something to try and
stop my eyes from deteriorating further. I should have already been seen in 2018 (sic),
I called the hospital, explained the situation and was told by the administrator that the
next appointment was in January 2019, and I was thinking like, I was saying to them,
‘That’s months away’ and it was just a horrible series of phone calls that I had
with them because I was getting more and more worked up and concerned, thinking that I’m
losing sight and no-one is doing anything about it. It took to the point that I said
to the ‘Look, I want your name, I’m going to hold you personally accountable’, and
this sounds so nasty saying it but I was saying ‘I’m afraid I’m going to lose my eyesight’.
I am already registered as blind, I do not want to lose what remaining sight I have and
I said ‘I will hold you personally accountable because you are saying I won’t be seen’
and that was the moment they finally gave me an appointment for, it was still a month
away, but I finally got an appointment. So it was a really, really stressful period – to
think that you are potentially losing sight and you could be losing more because people
are refusing to do anything about it. That is an incredibly, like, helpless feeling and
that’s the most let down I’ve felt. I think I am quite an articulate person and
I was trying to explain to the administrator who kept refusing for me to have an earlier
appointment, just how important it was. I kind of thought that if there was someone
else in my situation who potentially wasn’t able to express what they were going through
quite so well what chance would they have, and even the kind of confidence to say ‘OK,
give me your name’. Other people wouldn’t necessarily know to do that and, once you
lose sight, you can’t get it back, not with my condition. I’m in my 20’s, if I lose
more sight that’s it, you know, for the rest of my life and you know, although I am
already registered as blind, the sight that I have is incredibly important to me, and
I use it for everything. So I couldn’t, I wouldn’t, cope with it very well if I
felt….you know it’s one thing having to cope with losing sight…but feeling that
other people may have stopped you from stopping that….that wouldn’t kind of, go down very
well with me.

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