I then thought, why keep it to myself? As it was a fairly drawn out experience, I'll serialise it over a few blog posts. Hopefully someone will find it of interest. I'm a bit eye-squeamish (unsurprisingly less so after the last year or so!) so hopefully if I can read the posts to edit them, they won't make you feel too queasy either! Now over to my guest blogger...
Rachel has asked me to write a piece for her blog to detail my recent treatment for cataracts. The first thing people usually say is “You’re a bit young for cataracts aren’t you?” Being in my mid 40’s I’m no spring chicken but I don’t fit the usual profile for cataract surgery.
I have always been extremely myopic. I started wearing glasses for reading when I
was five years old and my sight has got progressively worse. When I was in my mid 20’s I had a detached
retina in my right eye. As it was
explained to me, due to my elongated eyeball the retina was stretched pretty
thin and had developed a tear. This tear
allowed aqueous humour to get behind the retina and, like water behind
wallpaper, it caused the retina to start to detach. The treatment I was given was a silicon
explant / buckle on the back of the affected eyeball (designed to push the wall
of the eye in towards the retina) and also laser surgery to “spot weld” the
retina and seal any tears. At the same
time they performed pre-emptive laser on my left eye to try to prevent this
being similarly affected.
What they didn’t tell me, and to be honest it would have
made no difference if they had as it was vital surgery to save my sight, was
that a common side effect of the laser surgery was premature cataract
formation.
So fast forward twenty years to February 2015 and I find myself
in the optician’s chair being told that my cataracts had developed to a point
where corrective lenses couldn’t bring my sight up to any reasonable
standard. I would need to be referred to
a hospital for surgery. It had been a
steady decline over several years so I was aware it was coming but it was still
a shock that I was going to need surgery.
The initial referral was to my GP. Due to NHS bureaucracy opticians cannot refer
direct to hospitals. I was warned
that my GP would probably want me to see them for a discussion about treatment
before referring me on but that it would all take place in about a week. After a fortnight of not hearing anything I chased the
practice and all they could tell me was that they had received the referral
letter but that nothing had been done with it. I chased a couple of times more, getting the same answer each time,
until I received a letter through the post in mid March 2015 inviting me to “choose
and book” my appointment. There were a
selection of hospitals to choose from and I selected the Bristol Eye
Hospital (the 'BEH'). Apart from my history of
myopia and detachment I also suffer from iritis, an autoimmune condition
which causes inflammation in the front of the eye. I assumed that it would be safer for me to
attend the hospital that would have a detailed history for me rather than
starting afresh somewhere else.
Unfortunately, the BEH is very popular due to its specialist
focus and it wasn’t possible to get a date for an appointment and instead I
received a “you’re in the pile” type of acknowledgement. Understandable but still not terribly
helpful. After hearing nothing after a
month I rang “choose and book” and was told I should hear soon. The next time I rang them (a couple of weeks
later) I was given the details of the hospital team to ring and also advised of process
for complaining to the Patient Liaison team at the hospital trust.
I spoke to the appointments team at the BEH who were very
rude. It was now May and I wanted to
know when I would hear something and at least get an appointment date
through. The lady I spoke to said, “I haven’t
got an appointment to give you, what do you expect me to do?”. Anticipating that NHS lack of resources would
be involved somewhere, what I had specifically not done was to demand an
appointment now / soon, I had just asked when I would hear what was happening.
Disappointed by the lack of compassion or understanding I
reluctantly complained to the Patient Liaison Service. I didn’t want to make things worse for the
Hospital but I was left with nowhere else to go. My written complaint was regarding the lack
of communication and transparency. Little did I know that this would not be the only time I had to formally
complain. I was initially contacted by
someone who asked me what I wanted to complain about. I explained and her response was “What do you
expect me to do about it, I can’t make you an appointment”. I was surprisingly, and somewhat
uncharacteristically calm (I don’t suffer poor service well) but was constantly
met with a negative attitude from someone who was obviously responding to the
complaint they expected me to make rather than the one I was making. I had no choice but to escalate my complaint. This was already feeling like an unnecessary waste of time
and effort and was having a detrimental effect on my blood pressure but I was
left with no other option other than wait indefinitely for a response.
I next received a phone call from the newly appointed appointment
booking manager. He sounded as though he
was just coming to realise the magnitude of the task before him and I was just
the tip of the iceberg. We had a long
conversation and he was very candid. The
hospital was struggling to find qualified clinicians to fill the posts required
to fulfil all the requested appointments. A backlog had built up and it was now at the point where if they did
find the suitable staff then facilities would be the limiting factor. He was obviously doing his best but couldn’t
practically schedule sufficient appointments to stay on top of the ever growing
waiting list. His plan was to find some
locum clinicians to concentrate on the backlog and just do the best he could. He couldn’t prioritise me as although effectively blind in one eye now, it wasn’t life threatening. To be fair, I didn’t want priority
treatment, I just wanted to know that something was happening and it would
eventually be resolved.
True to his word an assessment appointment came through in
early June. I had a lot of questions and
I thought this would be my opportunity to ask them. I had a complex history and given how
important my eyes are to me and my work and the pressures on the NHS I wanted to ask whether I should be thinking about going privately and potentially looking at a multi focal
implant. It would be expensive but a
price worth paying for something so important. It was also important to me to know when / if they would operate on my
right eye. It wasn’t yet at the point that it needed the surgery but it was well on the way.
The assessment clinic was packed and we had a long wait past
our appointment time. This is just
something that one comes to accept with the NHS. When we got to see the consultant he looked at my eyes and said “You
need to have these cataracts seen to.” I
was a little stunned, that was why we were there… “So what next?” I asked. A pre-op assessment was the answer. I asked my other questions and was told that
he had no idea and couldn’t comment as he was just a locum and
didn’t work at the hospital usually. With that we were shown out. I’d
waited four months to have an appointment with a locum who could give me no
information on my possible treatment but correctly identified the reason why my
optician had referred me in the first place. At least I was now in the system…
In July 2015 I had my pre-op assessment. I had been told that this would be with a
consultant but as it happened it was with a nurse. The first thing she did was ask me to take my
glasses off and then read letters off the chart. My prescription was -14 so without my glasses
I’m doing well to see the chart let alone read anything. She seemed amazed when I couldn’t read
anything and actually asked me, “can you see me?” and waved her arms.
They then put me on a machine that scans your eye and assesses
what strength of lens you need to give you perfect sight following the
operation. This is for distance only as
you will need reading glasses for close up. It's all automated and apparently can’t be influenced by human error
which was a relief as the nurse seemed confused by the results she was getting.
She couldn’t answer any of my questions so I left again not
really knowing what was going on. I
asked when I would see a consultant who could answer my questions and was told
that it would be on the morning of the operation. I was not going to wait until that late stage to get answers so I
complained to the Liaison Service again. After my previous experience I also went to see my GP. This process had dragged on so long that I
now lived fifty miles from Bristol and had changed GP. The GP was brilliant though, assuring me that
I wasn’t being a fussy bugger and that my questions were not only not
unreasonable but he would definitely recommend me getting them answered before
I proceeded. He said he would write to the
consultant named on my GP records.
A week later I had a second pre-op assessment, this time
with a doctor. He wasn’t a consultant
but he would, I was told, be able to answer all of my queries. He had a copy of my complaint in front of him
and he went through each point. Some of
his resolutions were a little vague and along the lines of, “I’m sorry but
there’s nothing we can do now” but one thing he did clarify was what would be
needed for my right eye. Wearing strong
glasses makes the image that you see smaller than uncorrected vision. He was very clear that I could not operate
with only one eye treated as the images from each eye would be different
sizes. I would definitely need both eyes
done in quick succession but that the NHS would not, under any circumstances,
do this as I could still see out of that eye. I needed to arrange a private consultation and surgery on my right eye.
When we got home from that appointment there was an
appointment letter waiting for me with a consultant. This was as a result of my GP’s letter. As I was under the impression that I had
already received the answers and clarifications that I sought I cancelled this
appointment. The consultant was Ms
Claire Bailey and having googled her she had an excellent reputation and an
expertise in retinal medicine. For this
reason I made a private appointment with her to discuss my right eye. She was on holiday so I couldn’t see her
until early September. By coincidence I
received a surgery date which was later the same week so it felt like things
were coming together.
When I met Ms Bailey in early September and recounted my
tale she was shocked and frustrated. It
turned out she was due to take a more senior role at the health trust and would
be responsible for overall clinical performance. She was most upset by the advice I had
been given that I would need the second eye done privately. She stated that as I could not operate with
only one eye done then the NHS had an obligation to do the second eye as well. She thought it wise if I was treated by her
personally and so I cancelled my upcoming surgery with another consultant and
awaited a new operation date with Ms Bailey.
The next post in the series will be up next Friday and will cover the operations...
The next post in the series will be up next Friday and will cover the operations...
I am so happy that this post ended on a positive note after such disheartening events! My wife had cataract surgery and the whole process from start to finish was just so hard, I don't wish it on anyone! I wish you all the best and I hope both your eye and surgery issues will be ironed out before you lose your mind!
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