Dry MD, Leaking Membrane & cataracts. How do you communicate with an eye doctor that fobs you off

Had an MD appt at eye hospital. I had had two cancelled MD appts and was very anxious as my vision has deteriorated after two bouts of flashes since my last appt in January. Sorry but I am venting here, but hoping this will give me some relief.

Dr: you have MD, I haven’t had time to look at your file

Me: I have dry do you mean I have wet? (I’d been attending the MD clinic for nearly 20 years)

Dr: You have a leaking membrane

Me: I’ve never been told that (I thought she had looked at another patient’s file)

Dr: points to my scan it is wet up here and there are some bumps down here

Me: At my last appt I was told there was more drusen (Dr ignores me).

Dr: Both these scans look the same.

She was comparing that day’s scan with the scan I had 2 wks ago in the Cornea Clinic and not my January’s MD scan.

Me: My vision has worsened and I have more distortions and I don’t know if the cause is MD or my other eye condition.

Dr: The scan has not shown any more distortions

Me thinking because you are comparing today’s scan with the scan taken 2 wks ago and not January MD’s scan.

Dr: You have a cataract that is the reason but we don’t need to do anything about it. You will be ok as you are taking Macushield. A new prescription for your glasses should help. I am writing your report now.

(I haven’t received her report, because she probably doesn’t want me to know her name. I have found that drs who have been ambiguous don’t bother doing a report. I have chased the report up and told there isn’t one here – it is probably being done now).

Dr: You next appt will be in 9 months but the Cornea Clinic will be seeing you before then.

Me thinking she is giving me a load of flannel, she doesn’t know when my next Cornea Clinic appt will be, Macushield hasn’t stopped my vision getting more distorted and neither has my new glasses prescription.

Dr: You can come back if you need to. Go to an optician first for a scan so the hospital can decide if they need to see you when they see the scan.

Me thinking what if I have a retinal detachment (as I have previously had pvds) that needs to be treated immediately how long would I have to wait to see an optician for a scan. She had such a cavalier attitude, it was useless querying anything she said because she just fobbed me off.

I have had many sleepless nights worrying about my eyes, having dry MD for nearly 20 years and other eye conditions. I would have thought that I would be able to deal more effectively with some dismissive, drs/consultants, but the older I get the more worn down and depressed I get. If having dry MD is not enough to contend with it is contending with drs (I don’t get to see a consultant every time my eyes are monitored) that are unapproachable. I know at the start of appts that some drs are going to be difficult to talk to. I don’t know whether they just lack empathy, communication\interpersonal skills, are callous, arrogant just don’t care, or are burned-out. I cannot be the only person who has more than one eye condition.

Has anyone found that having a cataract removed helped their vision, because I understood that it is a procedure that is not always possible if you have MD. I know I would have to have it done privately now.

[springcross]

Hi worrybeads. A few years ago, my late sister had cataracts done and it definitely improved her vision and her husband, who has dry AMD had his done too and he felt there was some improvement. However, he had one of them done again last year but that time it didn't do anything to help his vision. I have wet AMD in one of my eyes for which I receive Eylea injections and cataracts in both of them. The cataract in my bad eye has become bigger and the opthalmologist told me that they need to dry my eye up so that I can have a cataract operation in the bad eye as it is now affecting my vision. Also worrybeads, are you in the UK?

[Hidden in reply to springcross]

Thank you, it is a problem isn't it when you have MD (wet or dry) and then have cataracts which affect your vision. As if having MD isn't enough to deal with.

[springcross in reply to Hidden]

Absolutely. x

[Hidden]

I have small cataracts in both my wet and my dry eyes. Neither Eye doctor I have seen thinks they need to come out yet.

I don't know how this works in the UK because in the US we don't have any fashion of social medicine..HOWEVER..I would say if you are no longer comfortable with your Doctor...find another. There is no sense in using a Doc you have issues with.

Hang in there

Holly

[Hidden in reply to Hidden]

Thanks, I am in the UK and with our National Health Service you do not have the choice which eye doctor you see when you have an appt. That is at the eye units that I have been to. I have never seen the same eye doctor twice in all the years I have had my eyes monitored. If I was to go privately and didn't like the doctor, I could choose not to have another appt with them and I think that NHS doctors know that unless you go private you do not have a choice.

[Hidden in reply to Hidden]

We have something akin to that...but I think we were able to change at least once if we had a problem with the MD. If you have a Patient Advocate or group perhaps they could help you find someone or appeal?

Hang in there

Holly

[Hidden in reply to Hidden]

Hi Hollygg, the problem is that there are not enough doctors or consultants in our hospitals. If you are being treated on the NHS you do not have a choice of which doctor you will have at your appt. I just feel very lucky when I get an appt that has not been cancelled because of covid-19 and staff shortages. If you do go privately then you have a choice of which consultant you see and if you don't like them you don't go back.

[Eyesore]

Hi if you are in Manchester area I have the name of a brilliant man but he is private I went to see him after being diagnosed by NHS as having wet macular had 3 injections which didn’t work wasn’t happy with my consultant decided to go private and wow I don’t have wet macular but Epiretinal membrane the consultant I went to see took plenty of time discussing things and listening to what I wanted I had surgery 6 weeks ago aftercare was superb he even rang me at home to see how I was getting on let me know if you want his name.

[Hidden in reply to Eyesore]

Thank you very much for the recommendation. I don't live near Manchester but would be prepared to go there for a consultation. Can I come back to you on this pls.

[Eyesore in reply to Hidden]

No probs x

[Lizty]

Check your local hospitals for an eye consultant who specialises in MD. If you are in the UK you now have the right to ask to be referred to the consultant of your choice. My mother had the same problem with a non-communicative doctor and I arranged for her to see a new consultant privately and he was great. It cost about 200 pounds for the first consultation but it was worth it for her peace of mind. She can now see him on the NHS if she wants. Indeed, if you are not happy with your treatment..... especially if you have complex eye conditions.... you should choose your next doctor with care.

[Hidden in reply to Lizty]

Thank you. A couple of years ago an optometrist referred me privately to a dry eye specialist and he spoke to me as an adult, unfortunately some of the doctors I have had to deal with don't seem able to do that. I think there are too few drs in the NHS eye units that have the time to deal with all the patients. Would you mind letting me know which area the consultant was pls.

[Lizty in reply to Hidden]

Dorset. Unfortunately I am not allowed to pass on his name. However, if you go to the largest hospital in your vicinity and scroll down the staffing list you should be able to see who is the most qualified to help you. Yes, the NHS is an assembly line and that is understandable.... but there are some very good consultants in the NHS too. Guess it is the luck of the draw. But great that nowadays we have the option to ask our GP to refer us to the person of our choice!

[Lizty in reply to Lizty]

Note.... I had an operation in a London hospital a couple of years ago and discovered that patients in for similar treatment were travelling to the hospital from as far afield as Newcastle and Wales! By NHS taxi would you believe!

[Hidden in reply to Lizty]

Thanks Lizty, would you be able to pm me with the name? If you do a pm if is completely private and hidden. I go to an eye unit that is classified as a Centre of Excellence and I have had appts with some lovely NHS consultants, but unfortunately there just aren't enough of them, and everytime I have my eyes monitored I don't have any choice who I see - unless I was to go privately. When I asked the gp for a referral with a particular Sjogren's Syndrome specialist (dry eyes and dry mouth) she flatly refused. I just felt very lucky that I got a referral to the cornea clinic, as I know many women with Sjogren's Syndrome don't even manage to get an NHS referral. I think it must depend on what part of the country you live in where you can request an appt with a certain specialist. I hadn't heard of NHS taxis hey ho.

[Hidden in reply to Lizty]

"Dorset. Unfortunately I am not allowed to pass on his name."

Why?

[Lizty in reply to Hidden]

Health Unlocked rules on privacy....

[Hidden in reply to Lizty]

OH, yeah I forgot

[fed13]

Sending a big hug worrybeads! I have wet AMD in one eye; (it had had a successful cataract op. some time ago). I have Eylea injections, but at the moment the eye is scarred, but stable. I then developed a cataract in my other eye, which got progressively worse. Eventually I was just about to have an op. when the first lockdown was imposed. I had to read using a magnifying glass to read. I finally got this cataract operated on in the lull in Covid-19, in August.

I was absolutely thrilled at how much better my eye-sight became! It was incredible!

My heart goes out to you worrybeads about the difficulty communicating with your doctor. There are some doctors out there that you wonder how/why they haven't been struck off. I am not here talking about eye doctors; just in general. One day I shall write a book! See if as Litzy says above if you can get a referral to another consultant. As you use the term MD I guess you're not in the UK.

Do tell us how you get on. xx

[Hidden in reply to fed13]

Thanks fed13, unfortunately getting an NHS referral to an eye consultant, from my own personal experience the best you can get is a referral to the retinal unit . I have to have my eyes monitored on a regular basis at the Medical Retinal Service at an eye hospital and I don't always see a consultant, they are very short of consultants at the eye units I have had appts. at. What a boost that your cataract op was successful - I can feel your relief.

[Shimano]

Dear worrybeads, how I empathise with your frustration and growing exhaustion. Loosing vision is scary enough. Not knowing what is going on, not feeling listened to or cared about is terrifying, especially if you live alone. I won’t bore you with my own similar story but want you to know I really feel for you and hope you get some meaningful help soon.

[Hidden in reply to Shimano]

Thanks, I do have my husband, but I don't think people realize or care what having an eye disease is like. I personally think it should be classified as terminal rather than degeneration.

[Becky_MacularSociety Partner]

Good Afternoon Worrybeads,

It may be worth speaking to PALs if you are not happy and not getting clear information from your consultant.

If you are really concerned you could also ask to see a different specialist at the hospital to get a second opinion, ask o see a retinal specialist or someone who specialises in MD.

All the best

Becky

[Hidden in reply to Becky_MacularSociety]

Thanks Becky, Unfortunately I do not have the choice of seeing a different specialist When I get my appt I do not know who my appt will be with in the Medical Retinal Service. Because of covid-19 I have had three appts cancelled and I was just grateful to get an appt at all. I do not always see a consultant when I have my eyes monitored it is normally with a different doctor each time. I will have to go private and find an MD/cataract specialist . It is a bit of a minefield.

[Becky_MacularSociety Partner in reply to Hidden]

Good Morning worrybeads,

You may see a different person every time, but your treatment will be overseen by one consultant, was this the person you saw last time? If it is, then contact the hospital and ask for a second opinion from a different retinal consultant, this is something anyone can ask for. If it was not your consultant you saw, then ask for an appointment to discuss your concerns with them.

If you are unsure who you saw last time and if this was your consultant or not, then the hospital will be able to tell you if you ring them up.

All the best,

Becky

[Hidden in reply to Becky_MacularSociety]

Hi Becky, yes I do know that the doctors I see are under a Consultant. As I said, I had never seen this particular doctor\registrar\fellow before. I do not know who I saw as she has not sent me a report. The eye hospital I am under, as an out-patient with, is obviously overwhelmed because of covid-19 and social distancing meaning you cannot get an appointment\second opinion as easily as that, you are lucky if your appt isn't cancelled. I have had two Medical Retina appts and one cornea clinic cancelled this year My next Medical Retina appt is in July and I haven't got another cornea clinic appt. I am concerned about my eye condition and will have to have to go private with a consultant who is a specialist in the eye conditions I have, apart from MD.

It seems to me that depending on what part of the country you live in the hospital staffing levels and your particular eye condition is how quickly you can get follow-up/monitoring appts. It would certainly be a lot less stressful if it wasn't how it is with the covid-19 placing restrictions.

[Becky_MacularSociety Partner in reply to Hidden]

Good Morning Worrybeads,

Do you know if you r hospital has an eye clinic liaison officer (ECLO). They can be a really useful person to help get any extra appointments needed or messages sent to your consultant. If you are unsure, send me a private message with your hospital and I can look it up for you.

Also you can contact your consultant via the secretary and ask if you can have a telephone appointment to discuss, or if you can pass on some questions via the secretary for them to reply to. This can be over the phone, or via email. If you don't have these details, send me a private message and I may be able to get them for you

All the best

Becky

[Hidden in reply to Becky_MacularSociety]

Thanks very much for all your help Becky. I have been feeling so worn down with all the eye problems that I am having, that as soon as I feel ok enough again I will try and get a consultation with a consultant who specializes in the eye conditions I have. Thanks again for your help.

[Becky_MacularSociety Partner in reply to Hidden]

No worries, feel free to contact us at the macular society again if you need to

[Shimano]

Hi worrybeads. Be careful. My experience re cancellations and consultants is similar to yours but, if you go privately, you may not be able to transfer back to nhs eye clinics. Also, in my area private hospitals being used by nhs due to COVID and consultants private space For ops in nhs theatres has been cancelled. Check it out before you commit to anything. Agree with you. A total minefield and very depressing.

[Hidden in reply to Shimano]

Thanks Shimano, I was thinking of only having a private consultation only at this stage. I was looking at consultants who specialised in the eye conditions that I have. Yes private hospitals have been taken over by the NHS in this area also, it is stressful enough having a problem with your eyes without tackling this minefield isn't it?