Following on from my long post “Feeling fobbed off”
I’ve been sent an appointment for 16th May, so another 3+ months without any treatment.
Nothing on the letter tells me what is being done, 1 or both eyes.
I can’t get through to the appointment booking dept. But have an option online to change / cancel the appointment. I would try to change it but am worried that it might cancel the appointment I have booked.
What is a reasonable time to wait for SLT?
I’m really worried that I’ll have had eye pressures 28/30 for more than 5-1/2 months with no treatment.
I know the department is busy / behind but surely vision saving treatment is a priority.
Feeling very anxious now 😢 x
Written by
MelonJ
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Hi Trish, I'm glad I called and managed to speak to someone in the dept. The lovely lady said I'd been added to the surgical waiting list for injections at the request of the optometrist! She couldn't find my records, said they will be round with day surgery unit but that she was the one who had booked my appointment.
She's looking into it now to see what has gone wrong (or maybe she misunderstood).
I asked for the name of the person who I saw and found out he is an Optometrist, not an Opthalmologist - would that explain why he didn't see the urgency in lowering my pressures?
The lady I spoke to seemed concerned for me and said she would speak to the consultant to check and will call me later.
Doesn't give me much faith in the unit
Fingers crossed they come back with an earlier date and some info on what is being done - the letter just said an appointment had been arranged with no mention of what was being done.
MelonJ thank goodness you are being proactive but you really shouldn't have to be . It's good you did actually manage to speak to the person who booked your appointment but there's a huge difference between an injection and SLT!!!! I hope she does chase this up for you and gets it all cleared up Even though you didn't see an actual consultant it's appalling that an optometrist failed to realise that your raised eye pressure did need dealt with. I'm guessing he wasn't qualified to prescribe a prescription as only certain optometrists are.
Whenever I've received a letter from the eye clinic it's always stated on it exactly what procedure I will be undergoing. Fingers crossed all this is just a blip with the clinic you are attending and it will run smoothly from now on. X
I experienced a similar runaround with my eye clinic as none of the secretaries seem to be available - permanently on answerphone. Like you I had to be really persistent. If you really have no luck you could try PALS at your hospital - they’re usually brilliant at getting results. Good luck
Well I didn't get a callback so I called again. Spoke to someone else in the eye department who was able to tell me I was booked in for laser but not whether it was 1 or both eyes. I insisted he find out more and requested he speak to the consultant about the long delay too. He came back with a confirmation it's both eyes and that was the earliest the consultant could fit me in. Would I consider a different Dr carrying it out - of course I said yes as long as they're qualified to do laser.
Success of sorts, it has been brought forward now to 24/3 which I think is a good result.
It was definitely worth questioning the team and insisting on answers.
Now to prepare for SLT which I have to say I'm very nervous about 🥺 x
Good day from Thailand.....I have been reading your posts and thought it be best to calm you down about SLT.....Yes it sounds daunting,I assure you nothing at all to be anxious or worry about..... There are just little tiny ticks you will hear from the Laser beam.... sounds all Star Trekkiish doesn't it.😂.... but totally harmless...My opinion is that you should do visualisation techniques, some gentle breathing exercises, good positive thoughts....And hope SLT will reduce your IOP.....It is repeatable.....so no worries...I have had Laser Peripheral Iridotomy and SLT 180 which didn't work for me... Just enjoy life and good luck..
You’ll be fine I promise. I just think the ‘laser’ word is far scarier than the actual procedure. I watched an amazing webinar on laser treatment via the Glaucoma website and only wished I had seen it before I had it done. I’ll do my best to find the link so you can watch it too. I have had SLT twice now and it really didn’t hurt and was nothing like I expected.
You are not getting the best care from this Hospital, but this is the 'norm' these days. Consultants at most eye hospitals and departments have very lucrative private practises that keeps them away from clinics a lot of the time. Although they are not allowed to jeopardise the treatment of their NHS patients according to the 2012 Act, no-one seems to be enforcing this that I can see LOL (I'm registered blind).
I had to wait six months for my SLT in 2018 because the laser generator was broken, but due to the hospital being a PFI unit it has to be fixed by the facilities company who were clueless. I had the treatment but NO follow up or steroids and was told four weeks later it had not worked. As I was allergic to prostaglandin drops this devastated me as I had no place to go. To cut a long story short I was lost to follow up and treatment 2 x over a period of two years, which is why I am now blind.
I am slightly bemused by the pressures you quote as they seem quite reasonable unless you have normal tension glaucoma, which is not rare but unusual.
You do have to keep battering away at these people to get anywhere and PALS is the best route to get heard and to be honest op[monetarists are often much better than Consultants as regards knowledge . Do not be too disheartened: Ophthalmology is nationally in a poor state partly due to what I have said as well as years of cuts to funding, spending money on useless protocols and PFI, which then eats up all the money just standing still before any patient gets through the door.
I have spent the last eleven years of my life as a patient advocate who is supposed to know what he's -doing, battering away at the doors to treatment and look where it has got me, but I'm still fighting, and will to my last breath (or ganglion cell), whichever come first, so never stop.
Hi blacksog76,I'm so sorry to hear your story. It sounds like you've had a rough few years. I'm glad to see that you are still fighting your case. Like most of the people on this forum we recognize how important our eyesight is and will do everything we can to preserve it.
I am not willing to follow a wait and see approach. Why would I allow any of me sight to be lost when a simple procedure can (I hope) halt the progress for now.
I know that the people I have seen in the different departments are well qualified, I just think they don't always act in the best interest of their patients. From the loss of my referral letter, to lack of available past history at my latest appointment then the outpatient appointment being booked for eye injections instead of SLT - it really does make me worry about the state of the NHS.
I am in a position to stand up for myself but I know there are many people who don't feel able to or are unaware that their treatment is wrong or inadequate. Doctors and consultants diagnoses / opinions are taken as being 100% but they are only human like the rest of us. Sometimes they make mistakes or maybe are not up to date with the latest treatments and understanding of conditions. We know they should be but they are not infallible.
I didn't quite understand why you said "I am slightly bemused by the pressures you quote as they seem quite reasonable unless you have normal tension glaucoma, which is not rare but unusual." My pressures are 28 and 30 which is high. I've been monitored since they were 22 and have stayed around 24 for some years but have jumped up to 28 / 30 in the is last 12 months. With thin corneas I understand this may give a false reading meaning pressures are probably higher than this. I also have family history, both my mother and grandmother have Glaucoma.
My visual fields were borderline in November and showed a lot more black areas this time which the optometrist put down to ' probably the lens obscuring your view' - which was strange, I thought these tests were what they rely on to diagnose vision loss. Why ignore the results.
Anyway, I am getting SLT in both eyes end of March which is better than waiting until Mid May.
Thankyou for your response. It's good to hear other people's stories.
When speaking about the lens obscuring your view, if you have had a cataract removed, at some time between months and many years the lens implanted becomes as cloudy as the one that has been removed. This is called 'posterior capsular opacification', (PCO), and is caused by regrowth of fragments of the original epithelial cells of the lens removed, on the rear of the implanted lens. Otherwise I cannot think of what was meant.
PCO is very easily cleared by laser capsulotomy, a quick and simple treatment that is pain free. The incidence is largely determined by the quality and diligence of the surgeon. I've had one last five years and the other eighteen and even then it was still almost clear.
I always think of this as 'the elephant in the room' +because it is rarely mentioned at cataract consultations but will always occur eventually.
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thanks x
frustrated and anxious re appt 
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Outpatient delays!
SLT UPDATE 7 MONTHS LATER
