Traumatic afternoon at eye clinic!

[Engima]

Had an appointment yesterday afternoon at 1.45pm to check my eye pressures. Got there, only to be told that my appointment for some unknown reason had been cancelled! I hadn't received any communication to let me know, so had to wait for about 20 minutes while the receptionist looked for my notes and was then told my notes could not be found! The receptionist booked me in again for the same afternoon and I finally saw an eye doctor at 3.30pm. Was then told my pressures had gone up to 21 in left eye and 23 in the right. A few weeks ago they were both 15. Was then told I needed to take extra drops and was prescribed Dorzolamide with Timolol. Tried to tell the doctor that i couldn't take eye drops with Timolol but was ignored. Have been trying on and off today to get in touch with someone to get the prescription changed to just Dorzolamide (which I have had before and were OK) to no avail. Been passed from one department to another (and actually ended up at a biological department for some reason). Have now managed to leave a message on answaphone to one of the eye consulant's secretaries but am not holding my breath that they will get back to me today. All very worrying for several reasons, not least that the appointment had been cancelled, my notes had disappeared and was prescribed drops I am allergic to. Plus I obviously need to get a new prescription fast. I also had an opticians appointment this morning for new spectacles and was told the astigmatism in the right eye was worse than before and was probably due to the way the lens (after cataract op) was sitting. Will have to bring that up once again as I have mentioned discomfort and blurring when visiting the eye clinic several times. The left eye (which had astigmatism correction, the right did not) had been halved. The pressures were tested again and it as still 21 in the left eye but had gone down to 16 in the right one. Really worried and frustrated as I can never get any firm answers at the eye clinic. Did ask to speak to the consultant yesterday but was told he was not there. Just hope someone rings me soon regarding hat happened yesterday and getting a prescription for different eye drops.

[muddledme]

So sorry to hear about your very traumatic experience yesterday.

Have you got a 24 hour phone number for the opthalmologist at the hospital ?

I have found this extremely useful.

It does sound like the clinic was in a muddle, maybe very busy and understaffed.

Although I do understand how worrying it can be.

If you do not have the 24 hr phone number , you could maybe phone the hospital and ask if there is anyone on call who may help you, perhaps on the eye ward ?

In Somerset we have the A.C.E.S scheme, they have specially trained opticians willing to see people with problems. Apparently there are several different but similar systems all over England. The optitian I see can even alter prescriptions.

Meanwhile perhaps you could ask your surgery if they have the plain Dorzolamide in stock... so they can be ready if you need it.

I would keep phoning the Consultant's secretary, as often they seem to work funny hours, or as happened to me once they were on holiday !

Once you get your eyes sorted out it may be helpful to tell the hospital of your experience.. so that they understand the impact.

Perhaps you could also write everything down and send the letter to your consultant.

Some consultants on the Glaucoma UK webinars have asked patients to do this if they have problems.

Anyway do hope someone listens to you and things resolve soon.

Very best wishes

[rhys1234 in reply to muddledme]

I echo what the previous correspondent said about contacting your actual Consultant by name ( you must have one, surely ? ).

Many NHS hospitals now have informative websites in which you can see useful information ( eg education, previous appointments, specialisms, etc. ) about the Consultants, listed by Department.

They also often list the specific secretary / ies who work to the named Consultants. With their ( the secretaries' not the Consultants' ) email addresses.

In your situation I would write an ( old fashioned, on paper ) letter to the Consultant setting out your recent experience and concerns that your treatment plan is not yet optimal / having the desired effect on your eye pressures.

Hand deliver that letter today to the named Secretary of the named Consultant.

Yes, I mean go into the hospital and go to the Secretary's office and hand it to her / him, albeit it is addressed to the Consultant.

Then write an email to the Consultant with the same information and request for urgent attention.

Email that to the Secretary, whose email you found on the hospital website.

If no ackowledgement / follow up within 24 hours go back to the Secretary and start to badger.

Your eyes and the potential complications from uncontrolled pressure are too important to be embarrassed about ' making a fuss '.

But it all starts with direct communication with your Consultant by name.

[Engima in reply to rhys1234]

Hi. I did finally get a call from the consultant's secretary late yesterday afternoon to say the notes had been found and passed to the doctor who saw me to see if the drops could be changed and I would be contacted again today. If I do not hear anything by mid afternoon will then try to phone my doctor's surgery, but again this is a nightmare getting through and there are no doctors available either as they are hardly ever there, just leaving things to the nurses at the practice. Thanks for your suggestion of writing a letter and emailing. I cannot find any email addresses on the hospitals web site and do not know where the secretary's office at the hospital is. But I will be getting in touch with PALS.

[Engima in reply to muddledme]

Hi. I did finally get a call from the consultant's secretary late yesterday afternoon to say the notes had been found and passed to the doctor who saw me to see if the drops could be changed and I would be contacted again today. If I do not hear anything by mid afternoon will then try to phone my doctor's surgery, but again this is a nightmare getting through and there are no doctors available either as they are hardly ever there, just leaving things to the nurses at the practice.

[Hidden]

Enigma what a horrible experience, you must have been feeling so awful yesterday. We need to be able to trust our consultants and hospital staff. The whole thing was incompetence from beginning to end and I can't believe still not resolved. You have said all along that your right eye was uncomfortable and blurry and someone should be listening to you. To be given a prescription for eye drops you are allergic to just has me speechless. I really hope you do get a phonecall today and don't have to keep calling them. Busy or not,understaffed or not, this is in no way the way you should be treated.

Hugs to you Enigma and let us know how you get on. X

[Engima in reply to Hidden]

Hi. The consultant's secretary did finally ring back late yesterday afternoon. My notes have now been found (!) and were going to be passed to the doctor I saw on Monday. They would then look at them and presumably prescribe a different eye drop! Just got to wait to hear from the consultant's secretary again and in the meantime another day passes by. Think I may get in touch with PALS at the hospital who looks into complaints etc. Hope all is well with you and your little dog. x

[Hidden in reply to Engima]

I think you definitely should contact PALS as your treatment is really not satisfactory at all. Eye appointments are stressful enough at the best of times. You need your drops not sitting around waiting on a phonecall.All is good with Lu and I ,we are just in from a blustery walk along the beach,more seaweed than beach admittedly. X

[Engima in reply to Hidden]

Hi, yes will contact PAL definitely. Good to hear about your walk along the beach with Lu. x

[Sunshine88888888]

Hi Engima I’ve been in your position in the past and actually sat and cried in the clinic. I now contact PALs , I believe all hospitals have a department which supports patients having difficulties communicating with consultants, doctors etc. I’ve emailed them directly and very politely however very firmly that I am desperate to get the support I need. Both times have resulted in a phone call from PALs followed by a phone call from the hospital on the same day. Please do check to see if you have access to this department at your hospital. I have never had any luck on trying to make contact with secretaries or consultants myself, I wait and wait to no avail so have resorted to contacting PALs. I really feel for you, wish I could be more helpful. x

[Engima in reply to Sunshine88888888]

Thanks Sunshine. Have now heard from the consultant's secretary (see my post to Witchie) and awaiting another call to see what is going to happen. I have thought of contacting PALS, so think I definitely will. x

[Hidden]

I feel for you, and have had a similar experience at our local eye hospital. One doesn't seem to have a 'named' consultant any more, it's just the glaucoma team that you're under and our hospital has 2 consultants in that team. I did manage to contact one of them by email via his secretary... the other one had no contact details available on the hospital website. I also had the problem of consultant on his way out of the door telling the optometrist to put me back on latanoprost when I had had to come off it because of asthma. I did manage to get a word in edgewise then. I think they are all overstretched and understaffed and unable to deal with the normal large throughput of patients because of social distancing but that's not much use to the patient.

I would speak to your GP about the prescription and he/she should be able to make contact with the eye department and sort it out for you.

[Engima in reply to Hidden]

Sounds like all hospital eye clinics are the same! If I do not hear anything further today, will try to get through to my GP practice. But the lines are always busy, one only speaks to the receptionist when one does get through and there are no doctors available! Crazy world.

[rhys1234]

I still believe that establishing email contact with the Secretary of the specific Consultant whom you last saw is KEY.

S/he will have an email address which has NHS as part of the address.

FIND OUT what that email address is.

If it is not on the website then GO TO her/his office and ask for the email address.

Once you have that ( and start using it ) then you have a trail of who said what to whom about whatever.

And you have proof of it all.

Whereas 'phone conversations can be misheard / misremembered etc. .

[Engima]

Awaiting a call from the secretary, so will ask for email address then.

[Lovemy2woofs]

So sorry to read this , it’s very hit and miss and leaves patients feeling very vulnerable and frustrated .I hope you get a call very soon and get this sorted .

It’s really not on , sending you a big hug x

[Engima in reply to Lovemy2woofs]

Thanks. x