After waiting seventeen months for a glaucoma outpatient appointment to no avail,I decided to go to the opticians who informed my eye pressures are now 26 in each eye, I was referred to the hospital and got an appointment for 1545 today one month later! But today three hours before my appointment they cancelled and I now have to wait till November 11th before I hopefully finally get seen!The problem with this is I have no idea how long I have been having my eye pressure at 26 each eye it could in theory be eight months as that is the last time I visited my optician,should I be right to be concerned I have Primary Open Angled Glaucoma so not normally the quickest to progress?
Any advice welcome!
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Hello. I would suggest calling the eye secretary with your concerns. You will have more chance of getting an earlier appointment this way, rather than call the appointments department. If you can't get hold of the eye secretary, try the Eye Clinic Liaison Officer (ECLO), most hospitals have them or try the Patient Advise Liaison Services (PALS) either one will be able to relay your concerns to the eye secretary.
Thanks for the update,I tried calling the ECLO but no answer and the answerphone said I needed a trust id in order to leave a message so I then called the PALS again no answer so sent them an email which had an automated reply saying they will respond within 3 working days so we shall see.I'm almost certain people have lost eyesight due to this mess with delayed and cancelled appointments. I get better care at my local Specsavers than I do at the Brighton eye hospital.
My advice, if you can afford it and for peace of mind, would be to go private. After private consultation and treatment transfer to the NHS waiting list. To rub salt into the wound, it will probably be the same NHS consultant that sees you privately. The waiting time on the NHS is shameful. Currently around 12 mths at Manchester Royal Eye Hospital.
don’t delay. I ended up going private myself after two years of no fields test done or being seen at a clinic. My pressure were up at 28 whilst I was on high doses of eye drops. I only flagged how severe the issue was when I had my driving license revoked. The nhs promised me appointment after appointment and I never heard back. Disgraceful really as I’m only 36 too.
Pile as much pressure as you can with the nhs but i would personally suggest if you can afford it pay for a private consultation….ideally with the same consultant you have on the nhs if you trust there work
Thanks for your reply, I too have only had one field test since being an outpatient in about four years.I rely on my local optician to keep a baseline and check on these things.I'm thinking of writing to my local MP too as I think we all deserve better treatment than this!
we need to keep pressing the NHS for decent glaucoma services. It’s seen as less important than other eye specialities in my experience. Our local eye service prioritised cataract clinics, so that there is no zero waiting list and you can have your choice of umpteen clinics. Surprise, surprise, all of the consultants now specialise in cataract surgery and AMD injections, which are farmed out to the private sector.
I know there are a lot of challenges in the NHS at the moment, but people’s sight should not be put at risk!
I escalated my *feedback* after my last appointment into a formal complaint. If necessary I’ll be writing to the Trust Chief Exec!
This is a national scandal- I have had long waits for appointments that are then cancelled and when they do go ahead either there is no field test offered or the machine is broken.
I complained via PALS about my hospital ( Glan Clwyd in north wales) and got a ridiculously anodyne response.
When I complained formally not only was the investigation beyond all promised time limits but it conspicuously failed to address obvious errors and mistakes.
It is obvious that the nhs would like all users of this service to go private- when they will be treated by exactly the same people at their own expense.
I would urge everyone to complain vigorously about this service as it continues to deteriorate.
Sadly I agree with everything said here. There have been so many huge mistakes made along the way in my treatment. I am now registered disabled and that would not have been the case if things had happened at the right time in the right place.
I now pay to see my original excellent surgeon privately. He does still do occasional work for the NHS which he says is completely overwhelmed…certainly for glaucoma care.
Appointments get cancelled and then if you have to cancel an appointment yourself the systems cannot cope and the appointment is wasted for someone else.
My dad was a gp and I HATE going private…I do not NEED thick carpets and flashy waiting rooms…but I do need someone who knows what they are doing.
If you can afford it…do not hesitate…and get recommendations as to who to go to.
Thanks for your reply it's certainly looking like I may have to take out a private checkup package for peace of mind! It goes against everything I too believe in! 😣
I am in the same position. I’m paying to see someone who is an NHS consultant at the next hospital. Lifelong supporter of the NHS, I never thought I’d be in this position, but needs must.
I use the Brighton eye hospital and I had to wait over a year to be seen in the first instant then to be told I had Glaucoma in my left eye which had damaged the optic nerve "wish we had seen you sooner" I was told. So really persevere I have found calling the secretary of your consultant best but have you got a consultant yet if not just keep at it. Good Luck.
Might not be the same where you are but at the RVI in Newcastle you can ask to be put through to the secretaries without knowing the name of your consultant. That worked for me and I got a cancellation appointment within 2 days for my annual check which was by this time 6 months late, several phone calls required. Sorry state of affairs. Good luck.
Is there an emergency eye clinic at your local hospital? a visit there seeking help may be an option because high pressures can be painful. My local hospital's clinic opens at 7.30.am you may wait a few hours but it could be worth waiting for.
You cannot just walk into our emergency eye clinic. You have to be triaged by 111. They will probably just send you away. When prescribed the wrong medication having told doctor husband was allergic to it and he had a violent reaction we were seen but were told they shouldnt really be seeing us.
Thanks for your reply the patient advisory liaison service have just replied and are getting somebody from the eye hospital to contact me with advice so let's see what that is!
Thanks everyone for all your useful advice,I had a call from the eye hospital today and they have moved my re-appointment from the 12th November to the 15th October so talking to the Patient Advisory Liaison team has been positive,let's hope they don't cancel this appointment!
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