Hello. It is frustrating when you have to chase up hospital appointments but don't give up. You could also let the Patient Advisory Liaison Service (PALS) at the hospital know. Make a point of telling them how overdue for an appointment you are and that you and your eye specialist need to know if the drops you are taking are lowering your eye pressure sufficiently. They can then look into it for you.
You could visit your optician's to ask if they would check your eye pressures for you in the meantime.
I hope you get a definite date for your appointment very soon.
As Helen says, I would make an appointment with the optician and get them to check your pressure. If it is high you can notify the hospital and you may get an appointment sooner.
you have my sympathies, I can imagine how upsetting it is to be left hanging like this, when even while using drops religiously, none of us can be 100% certain more damage isn’t happening.
Apart from complaining to PALS which worked for my mother in a recent, similar situation, could you afford to have a private follow up? I know we shouldn’t have to and it’s shameful that so many are having to go down this road for basic treatment, but your sight is so important.
After the way I was treated during the pandemic I now have 4 monthly checks with a private consultant. It’s not cheap but the peace of mind it gives me is immeasurable.
Good morning, I don’t have anything to add to the useful suggestions that the other posters have made but wanted to say I understand your frustration and annoyance and sympathise with you, being in the same position myself. I’d try all things suggested: keep ‘phoning them, speak to PALS and visit your optician. My opticians have been super-helpful and proactive for me. Incidentally, they have told me that they too get ‘pushbacks’ from the hospitals - says it all really! I just wish there was a bit more honesty and transparency around this issue: whenever I’m at the hospital they are reassuring and say, ‘any problems etc’ but along the line they build in lots of delays and ignore calls and emails. I hope you get an appointment soon and are put on a pathway that you are happy with.
Hi Crafty-gran! I completely empathise with your situation. I was diagnosed already with central vision loss, and just before lockdown diagnosis amended to NTG and unstable. I then had a years wait to be seen due to lockdown. I was tearing my hair out! Also my eyeballs as I was allergic to the drops they’d just switched me to before lockdown but couldn’t get seen by hospital.
I did what others have suggested and located a good optician to check my pressures and fields regularly. Also to access my eyes for allergic reaction. On two occasions they have written to the hospital recommending I be seen ASAP as they were concerned. I think it did speed things up a bit and I was seen.
At other times my optician just reassured me all is well and not to worry. That in itself is priceless feedback as I spend the next 6 mths thinking less about my glaucoma. I spend £18 a mth on direct debit for 6 mthly checks in their glaucoma clinic including: fields, OCT, IOPs checked (with same equipment as hospital) and up to 30 mins discussion about my results. It’s a lot of money to commit in this economic downturn but I tell myself I could spend that much a month on a few trips to the coffee shop!
By contrast I was due for my hospital check in March but I haven’t had an invite yet and I’m told they’re running a year behind currently. 😬
Please let us know how you get on! You could try pushing the department for an earlier date maybe?
Hi Crafty-gran. Sorry to hear about your understandable concerns. i had a very similar diagnosis with NTG and eye damage. Glad you have the appointment in May. I found the Eye Clinic Liaison Service very helpful with information and support. I'm not sure, but I think most major hospitals have them attached to the eye clinics
Your experience echoes mine. Pretty much every appointment has been pushed back. The initial appointment took about seven months to come through and each subsequent appointment has been firstly later than the time frame recommended at the previous appointment and then cancelled and rearranged for some unknown reason. So frustrating when I already have peripheral vision loss and at the last appointment my pressures were still too high so my eye drops have been changed. Good advice to see the optician though. I will book that in.
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