One of the things I consider responsible, is the ability to act proactively and positively on the basis of knowledge. Many doctors and clinicians would know about diabetic retinopathy really well.
Many members of the general public would. But they may not have ever heard of sickle retinopathy.
People would generally get what you are talking about when you mention sickle retinopathy because of the known association with diabetes and vision.
1 in 10 people are diabetic. See? There is power in numbers.
Majority of your Type 1s will be screened regularly for diabetic retinopathy.
The last consultant who saw me told me if I was diabetic, they would be genuinely worried about my diagnosis. The fact that there is a risk that vessels in the eyes could burst and lead to hemorrhage causing sudden loss of sight is scary. Fortunately, this isn't always the case in sickle. It's very rare for a burst and vessels will tend to scar off.
The first time retina haemorrhage was ever associated with sickle was in the 1930s. However, it wasn't until the late 1940s that scientists and clinicians were able to understand the underlying mechanism of sickle retinopathy as it was later identified that the occlusion of small vessels which were caused by the sickling process resulted in changes/ damages in the retina.
Ha, the 'eureka' moment.
My diagnosis is non-proliferative sickle retinopathy.
Every year I ensure I get an annual eye check on the high street to ensure my vision is fine and there are no major risk factors. It's the responsible thing to do right?
The silly and unsettling thing about checks is that 9 out of 10 times, there is likely to be a finding that you are not looking forward to but early diagnosis is a powerful thing when you have a complicated disorder such as sickle cell. It's a life saver.
The eyes; one of the main 5 human senses. It's the core to calibrate, to express, to communicate, to process signals and messages to the brain, to see danger and be able to flee, to educate by reading, observing, sensing, it's the core sense to enable living, to enable life and reality.
One cannot underestimate the power of vision. Good vision.
So here is my narrative...
The latest eye test I had in Spring 2017 identified some changes with my sight and I was re-referred to medical retina at Moorfields Eye Hospital after being initially discharged in 2015.
I say re-referred because I was under their management but I still cannot understand why I was discharged in the first place.
Someone at risk of retinopathy, you would think that I would be kept on their books right? No!
They probably thought I didn't need to be followed up regularly because there were no significant changes to my eyes. But actually, they were and this is where some clinicians get it wrong and most times to the detriment of patients. I work in the NHS so I get the fact that a reduction in the number of follow ups results in savings. However, when a patient is considered clinically high risk, the clinical decision to discharge them can often be the wrong move and that's where I felt like the decline in my sight was missed.
The initial referral to Moorfields stemmed from symptoms I had started to experience in 2014 with blurred vision, blackouts, migraines/ headaches etc. My then consultant made a judgement based on my reports and advised it was wise to get to A&E at Moorfields.
They discharged me after a few follow ups.
A year later, my high street optician saw what he described as a 'birthmark' at the back of my right eye when conducting an eye check.
He asked me if I knew about this. Of course not, I had no idea! How was I suppose to know about a birthmark at the back of my eye. It's a ridiculous question.
Unbeknown to him or I, the birthmark was a lumped vessel resulting from a past crisis probably when I was much younger. It was situated in a non-peripheral area in my eye. This means it doesn't necessarily impact on my actual vision. It was sickle retinopathy.
I have been followed up since then at Moorfields and today was an eye opener to what real patient experience can be like.
Anyway fast forward to today's appointment at the eye hospital, here is a recollection of my morning.
My appointment was for 8.30am
I arrived Clinic 12 at 8.15
It's past 8.30 there are no Receptionists out there to attend to patients. SMH!
8.45 The nurses call me for a vision and eye pressure test including general observations and assessments.
8.54 I have been given two stingy eye drops to dilate my pupils resulting in some discomfort. I clean up the residue of drops and my mascara leaves its own signifying residue on the tissues.
Nurse sends me out with a green card to medical imaging.
8.57 I walk over to hand over my green card to medical imaging for my scans and photographs.
While I wait, I fetch some water to drink next to the coffee vending machine. It's cold. I sigh.
There is no mobile network at the eye hospital. I am bored.
I wait while I sit writing some of this as my pupils dialate and my vision slowly blurs into a cloud-like vision.
I want a coffee and a croissant badly but I can't find my way through the corridors. My vision is almost gone. The walk to the imaging rooms are not up to 5 metres from where I am sitting. It's ok, I thought.
I also wonder when I will ever stop sitting in hospital corridors waiting for appointments. It's not dejavu each time I am there, it's real.
I wonder if everyone here who is black in Professor's Tufial's clinic has sickle. I am pretty certain 80% of people here have diabetic retinopathy.
9.20 Doctor calls me. However, scans haven't been done yet so she orders an additional scan which she thought was more important than what the nurses ordered.
She tells me she will call me again.
9.35 I have my OCT scan.
This involves staying still and looking straight at a bright shiny green X like shaped light located right in the middle of the machine as a red line goes across it for 10 seconds.
My eyes water from staring still and being wide eyed.
9.37 more photographs taken at the Laser Suite. This involves titling your head to one side of the machine and looking at circular lights with eyes again, wide open and before you know it, Click, Light, Flash!
9.43 Back to Clinic 12 waiting to be called.
9.50 Doctor calls
More examinations. I realize she must be a junior doctor as she says she needs to speak to the consultant.
For Petes sakes I thought! I used a rude word, make no mistake!
She admits to not knowing a lot about sickle retinopathy and I wonder to myself, why waste my time? I was actually scheduled to see a consultant as you can see from my letter.
Anyway she does her thing and goes back and forth to speak to the consultant for advice and finally comes back to order more tests.
2 additional OCTs.
Really? I was irritated at this point.
She explains that the consultant ordered the additional scans because of the reports I gave about my labored vision.
She explains that these are more sophisticated tests which will give a true and detailed indication of any risks to my vision. I was grateful for this and for the fact that I can access the best technology for my treatment in one of the world's most renowned eye hospitals. So I became less irritated (only for 10 mins).
10.23 back to the Laser Suite. This scan involves a similar bright green X like light for focal view. It's an OCT as well.
10.32 my next scan involves looking straight and still into a blue circular light for focus whilst a red line scanned horizontally through it.
"Look at the center and keep your eyes on the blue dot" he says.
He scans both eyes.
Next stop, another scan, same machine, brighter lights with additional lens added on.
Focal vision for photography.
I am mentally and physically exhausted.
10.34 back to Clinic 12, again, waiting to be called back for the umpteenth time by the doctor.
These scans are great and I am truly fascinated they are able to give an accurate 3D view of any issues in the retina which old technology would not have been able to support. It is indeed phenomenal but this clinic is so disorganized it's unreal.
11.10 still waiting in Clinic 12.
11.25 I am still waiting for the doctor. I walk up to reception to ask them to let the doctor know I was in a hurry to get to work. I am terribly irritated at the length of time spent and I become claustrophobic.
11.27 I got called in! Phew! Finally!
She tells me that upon examination of those additional scans, there are no major changes to both eyes from the last diagnosis.
However, they will continue to monitor me and will see me again in 4 months because changes can obviously occur in a short time frame.
She tells me that the OCT scans will serve as a baseline for future diagnosis and the decision to treat where appropriate.
I am grateful for the ability to challenge my clinicians and ask questions about these things and working in the health sector gives me insight to challenge my care.
She also asked me to visit my optician again to check my glasses as the scans don't show any reason why there should be a significant visual change.
I was asked to bring in my optician's report at the next appointment.
I say thanks to her and she apologized for the long waits, I take a photo of my eye images indicating the sunbursts. She smiles at that singular action with an expression that read on her face "this patient is a pain"!
(Left and right eyes showing the sun bursts)
I say goodbye.
But with a strong conviction to give all the staff there the middle finger for keeping me for nearly 4 hours in the basement of the hospital.
It was a terrible morning. But I am fine.
11.36 I exit the hospital.
***(For anyone who has sickle cell, please get regular checks for symptoms of retinopathy)