Moorfields Private Eye Hospital- Opinions?!

[IrishEyes1992]

Hey guys,

Im from Northern Ireland and have chronic inflammatory dry eye. I have seen two opthamologists here in Northern Ireland. My first one was extremely rude....the second guy was better and more understanding but seemed to be very into steroids and wants me using maintenance doses three times per day for three days once per month. ( though warned me they can cause blindness) he said Ikervis would be way down the road.

Can anyone from the UK who has been to Moorfields eye hospital give me some information about it?.....Was your experience good/bad? Would you recommend it or is it no different to going anywhere else?? Does anyone have a consultant at Moorfields that they can recommend?

Does Moorfields give out Ikervis on private prescription? I rang them and they said they do stock it but obviously they need to see you for a consultation....so I'm wondering do they give it out on private prescription or is it like a lot of places where they very rarely give it out in only the worse case scenario...no point in me going over there if they aren't going to give me it.


I would really appreciate it if anyone could get back to me on their experience of Moorfields and whether they would recommend me going or not. I would be going as a private patient....im not sure if its the same hospital/building as the NHS or if its all one place or two completely separate places.

Thanks!

[CharlieGreenEyes]

I haven't been there as a private patient but had very bad experiences there as an NHS patient. This was 3 or 4 years ago though - and from what I've read (here and reviews on NHS patient opinion site) experieces are mixed - some very good, some not good. Privately I guess would (hopefully) be different - and I have considered it for myself but went somewhere else (also privately, in desperation) in the end.

My experience on the NHS there was: I never got to see the consultant, waited 2 hours to be seen by a rushed dismissive opthalmologist (the wait would be worth it if I'd had a proper consultation and examination but that never happened when I went, which was a number of times), and I was left without any effective help for my eyes. But, you'd be going privately where, presumably, the wait is short and you get to see the consultant (and have a proper non-rushed examination and consultation). From what I understand they do prescribe Ikervis - both privately and on the NHS, but I don't know if their private department is like other places (and the NHS at Moorfields when I last went) and try not to give it out.

Sorry I can't help more. I was recommended a consultant there a few years ago (I was actually supposed to be under him on the NHS but never got seen by him). It's been a couple of years since I last visited this site so I'm not sure what the rules are on giving out names here? I also haven't seen him myself so can only pass on a 2nd-hand recommendation - but happy to do so if someone confirms it's okay to give out names.

Just as some extra info. I recently saw someone privately. Not at Moorfields but another name I found on here recommended by someone. He also seemed to want steroids (prescribed me some) and didn't mention ikervis at all. I'm not sure if this is just how it is in the UK - and whether you need to push for it (I regret not asking about it at the time), or whether it's because he hadn't seen me before and starts from the beginning as if you haven't been seen by anyone before (so leaves ikervis until you've tried other options).

[nori2015]

There's a guy there called Romesh Angunawela, I saw him briefly through the NHS, but he truly cares and he'll spend time with you. Try and see him privately if you can so you get more time with him. Good luck.

[OcchiSecchi]

Hi, I have been at moorfield as private a few times. The private consultation is in the same building, with just a different access door.

It was not useful for me. I suffer from blepharitis appeared 6 months after lasik (performed somewhere else). I hoped that being the best opthalmic hospital in the UK, they would have been well prepared to check what's going on, e.g by using special test. But they did not do anything more than things that I could have done at Specsavers. Not even a shirmer test, or a tbut. They are kind people, and they look professional, beautiful infrastructure. But, i am not sure if moorfield is the right place for dry eyes.

[IrishEyes1992]

Thanks for your reply

i have booked the appointment as I am going to London next week anyway and thought I may aswell.

I really booked the appointment in the in the hope that they might prescribe IKervis (though they probably won't).... did you have IKervis prescribed/do you know if they prescribe it?

Thanks!

[OcchiSecchi]

Good luck with your visit. Which ophthalmologist are you going to meet? They never mentioned Ikervis to me. They only gave me chloramphenicol for my eyelids. I have recently been suggested to start Ikervis from dr in Paris. But, I did not start yet.

[MGD1701]

Hi
shirmer test: is pretty old and not so useful. now many doctors actually do not do it but osmalarity/TearLab.

Ikervis: As far as I know, now more doctors in USA recommend to use such/similiar drops as early intervention is important to keep inflammation/MGD under control. old practice was only used them for serious cases.

[littlemermaid]

Ciclosporin as Ikervis has been recommended in UK since December 2015 NICE guidelines https://www.nice.org.uk/guidance/ta369 (Ciclosporin for treating dry eye disease that has not improved despite treatment with artificial tears, Technology appraisal guidance [TA369] Published date: 16 December 2015). Criteria would include someone who wishes/needs to avoid side effects from using steroids.

Before Ikervis, ophthalmologists prescribed Optimmune.

The only sticking point is that the doctor might need to apply to the local healthboard Drugs Committee (on cost - '2.2 The acquisition cost of a monthly course of ciclosporin is £72 (excluding VAT)'. It is cheaper to use generic steroids and accept the risks of increasing intraocular pressure (get IOP tested if on steroid for over a week). Not ideal for the patient though.

Check the local healthboard drugs formulary http://niformulary.hscni.net/Pages/default.aspx. If you need help, ask a wise community or hospital Pharmacist (avoid chains tied in to specific drug company deals).

Any Ophthalmologist can prescribe any approved drug, either in public health or private practice. Restrictions are whether they confer, read up, or are hampered by budget. Obviously a prescriber discusses risk/benefit and effects monitoring.

Patients here report getting Ikervis in England, Scotland and Wales from cornea specialist Consultant Ophthalmologists in large teaching hospitals. A diagnosis and prescription letter from a specialist for any treatment enables any local services to support us better. If ego is a problem, we can print out clinical guidelines as if we are asking for clarification, and leave it behind on the chair.

https://www.rcophth.ac.uk/wp-content...ugust-2016.pdf Clinical Guidance Ophthalmic Special Order Products, Royal College of Ophthalmologists, UK Ophthalmic Pharmacy Group.

[Sorry for add-on.] Just found Northern Ireland Medicines Management Newsletter, January 2016, Issue 1, p2.

http://niformulary.hscni.net/Prescri...ssue1Jan16.pdf -

Ikervis®
ciclosporin 1 mg/mL eye drops emulsion, are licensed for the treatment of
severe keratitis in adult patients with dry eye disease, which has not improved despite
treatment with tear substitutes. The recommended dose is one drop to be applied to
the affected eye(s) once daily at bedtime (see SPC for full details). Ciclosporin eye
preparations should be initiated by an ophthalmologist or a healthcare
professional qualified in ophthalmology.
Currently, all prescribing of ciclosporin eye drops/ointments in Northern Ireland are for unlicensed products which
range in strength and prices from £70.20 to £937.20 (Ikervis®
costs £72 per 30 units).The NI Formulary
Ophthalmology review group have reviewed the new product and support a change of all existing patients
currently prescribed unlicensed products of various strengths to this licensed product. Please refer to the
initiating ophthalmologist if there is any doubt about the individual patient’s dosage.
Action for GPs
 Search for all patients prescribed ciclosporin eye preparations.
 Change all patients initiated by an ophthalmologist or under the care of a specialist to the licensed product
Ikervis®
ciclosporin 1 mg/mL 0.1% eye drops emulsion.
 GPs should review patients not initiated by an ophthalmologist and take appropriate action.
Action for Community Pharmacists
 Pharmacists should counsel and support patients changed to the new licensed preparation.
 Ikervis®
ciclosporin 1 mg/mL 0.1% eye drops emulsion 30x0.3ml is for single use only. Each single-dose
container is sufficient to treat both eyes. Any unused emulsion should be discarded immediately.
 Ikervis®
is available in NI through wholesalers with next day delivery

[PhoenixEyes]

Yeah typically they like to try other options first. Artificial tears, lubricant ointments, antibiotics, steroids etc. before immunosupressants (cyclosporine).

I also second the above about getting pressure checked when on steroids (mine did go up) also get eyes dilated occasionally to check for steroid-induced cataracts (which sadly I got).

[IrishEyes1992]

Hi Phoenix eyes,

sorry to hear that you got cataracts....did you have them removed? How long was it you used steroids for before the pressure in your eye increased?

Have you had any success with the IKervis?

Thanks!

[PhoenixEyes]

Hi Phoenix eyes,

sorry to hear that you got cataracts....did you have them removed? How long was it you used steroids for before the pressure in your eye increased?

Have you had any success with the IKervis?

Thanks!

Hi,

The cataracts is still small so surgery isn't indicated yet. Not sure how much it's affecting my vision compared to how dry eye is affecting it. I felt I noticed a slight difference in colour perception after about 8-10 months or so of steroid eye drops and then they found cataracts. I've been taking antioxidants to try and help it, but only proven cure is surgery it seems

The raised eye pressure came on after about 4-5 months I think. I was put on various pressure lowering eye drops to prevent glaucoma. Sadly glaucoma medication can sometimes cause dry eye and I also found them irritating. One of them gave me temporary hyperaemia (too much blood flow to the eye). They did keep my pressure under control though.

After the steroid-induced cataracts was discovered I was upset and decided to taper off then quit. My eye pressure is now normal without glaucoma medication.

I get along OK with Ikervis. My eye doctor said some can find it stings but I seem to be fine with it, maybe temporary burning but nothing intolerable. My eyes sting like crazy with Systane Balance and such so I'm glad I can tolerate it. I think I get along well with Santen's formulations as I also have taken Oftaquix and Cationorm by them without stinging, everyone is different though. I dunno how much or not it's helping as I hear it can take months for it to work so I guess it is subtle. Hopefully it is gradually increasing goblet cells and all that jazz.

[IrishEyes1992]

Really sorry that happened to you! were you using the steroid eye drops every day for 4-5 months or how often were you using them? Using them definitely makes me a bit nervous lol.

Im glad your eye pressure is normal again!

I have an appointment at Moorfields on Thursday morning, I want to see if they will give me Ikervis, though knowing my luck they won't! I feel nervous about it lol...feeling like it will just be another disappointment!

[PhoenixEyes]

Thank you, I appreciate the kind words. Yes daily use during the whole time I was on them as I had very bad inflammation even with Ikervis etc. Started at 4x a day I think then 2x a day then tapered to 1x before stopping. Yes being able to get off the pressure medication is nice, I hated those.

[CharlieGreenEyes]

Hi IrishEyes1992. Just wondered how your appointment went? I hope it went well - and you got some good help (i.e. an opthalmologist that actually listened to you and did proper tests). Did you get the ikervis? Or if not, perhaps you were given something else - medication or other treatment that helped - I hope so.

I'm planning to ask for Ikervis at my next appointment (I'm not going to Moorfields - but am considering it if things don't improve soon.

LittleMermaid - Do you know if it's vital to get IOP checked after just one week on steroid drops? I'm a bit concerned about the advice of my new opth. They prescribed FML to me - for 4 weeks (tapered off, less each week) but they said I had no need to worry about glaucoma. I was a bit worried because a previous opth a few months earlier had told me my eye pressure was on the cusp (it was 21), but it was normal when the new opth prescribed FML. I was told I didn't need the IOP checked for a few months. Each specialist tells you something different!

[PhoenixEyes]

LittleMermaid - Do you know if it's vital to get IOP checked after just one week on steroid drops? I'm a bit concerned about the advice of my new opth. They prescribed FML to me - for 4 weeks (tapered off, less each week) but they said I had no need to worry about glaucoma. I was a bit worried because a previous opth a few months earlier had told me my eye pressure was on the cusp (it was 21), but it was normal when the new opth prescribed FML. I was told I didn't need the IOP checked for a few months. Each specialist tells you something different!

I would get it checked after 2 weeks at least when first starting on them. I don't know where you are based, but if an ophthalmologist won't do it then some opticians also have the equipment to check. I think I've heard FML is less risky than other steroids so maybe that's why they aren't worried, but better safe than sorry in my opinion, like you say though opinions vary.

I had none of the risk factors for glaucoma but my pressure still went up after a few months of steroids daily. I saw an eye doctor every 2 - 4 weeks due to my condition (unrelated to glaucoma) and they checked each time I saw them.