NHS Hospital

[Kris]

Hi All,

I was wondering if anyone had a similar experience with an NHS Hospital in regards to Keratoconus?

I am really disappointed. Apart from their booking system which screwed up my first appointment (it kept sending me letters moving my appointment but the department had me down as 'did not attend'!!!!), they were no help at all.

They said I have mild Keratoconus and they are sending me to a contact lens specialist, which they have and she is not bad. But I got no information, nothing on alternative treatment options and no further guidance at all. I found out from the CL specialist that my Keratoconus appears atypical because the cornea is bumpy/wavy, rather than cone-shaped. Which might explain why I was told it's mild but I can't see well at all!

I was then told that I would get a letter with a follow-up appointment in a few months time. This still hasn't happened 7 months later and when I ask/call them, I am told that I can't make the appointment but have to wait for them to do it and they do it in order of severity.

Has anyone experienced similar?

I would really like to be referred to a different hospital that has more experience, but my GP won't do anything until I've been back to this hospital and they are being useless!

I would very much appreciate any advice, it's getting very frustrating and I am trying to keep the momentum going and getting some results, but am being stone-walled on every front

thanks,

Kris

[Anne Klepacz]

Hi Kris,
I hope you'll understand, but I've edited out the details of the hospital you attend. We ask people who post here NOT to make critical remarks about named clinics or individuals for legal reasons.
But to answer your question, yes, lots of us have had similar experiences in a variety of NHS hospitals! There's often huge time pressure in NHS clinics so spending the time with a patient to go through what the condition means and what options are available all too often has to go by the board. That's why this charity was set up (back in pre internet days) because so many of us found it difficult to get enough information about KC. And when you're newly diagnosed with an obscure condition, without a bit of information, it's hard to know even what questions you should be asking! If you're not already on our mailing list, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you our information booklet and other info which I hope will be useful.
Administrative mix ups in hospitals (and any large organisations) also aren't uncommon. I'm not clear from your post whether some contact lenses have been ordered for you or whether it's the fitting appt that you're waiting for. It's certainly worth checking whether you're still definitely in 'the system' or whether your file has got lost somewhere. If you're still waiting for a contact lens fitting, then 7 months seems a very long time to wait. I think most hospitals still have PALS teams (Patient Liaison) which can help with sorting out log jams like this. And many hospitals also have an Eye Clinic Liaison Officer (ECLO) these days who might be able to help.
I hope you get something sorted soon.
Anne

[longhoc]

Hi Kris

Ditto to what Anne has said ! I won't bore you with the wasting of time and general faffing about I had when I tried to get back into the NHS "system" after having treatment in private practice. Let's just say I had to re-introduce Mr. Left Hand to Mr. Right Hand as both seemed to have become rather disconnected...

Going to the hospital through the routes Anne mentioned can usually help sort things out. Often it is just miscommunication -- I don't think I've ever found any major examples of completely inadequate care per se, more like the professionals not understanding how unliveable with a situation is to me (where they were obviously of the opinion that it wasn't as bad as all that).

But if you've really lost trust and confidence in a clinic -- especially if you've tried unsuccessfully to get them to put things right -- you can go back to your G.P in Primary Care and explain in unvarnished terms what you're having to endure on a daily basis and how it is affecting your quality of life. Anything to do with eyesight has a huge impact on quality of life impact scoring. Obviously precious NHS resources must be allocated on a needs basis, or "in order of severity" as you were told. But if you're unhappy then it's important that when the assessment of needs is made, then the degree to which your Keratoconus is impacting your life is fully included. It sounds like from what you've put that you might have to wait 7 months to be seen by the hospital again ? I'm sure that can be improved upon so if you're needing to be assessed more quickly than that, do speak to your G.P. about the situation. It might also be the case that another hospital has a shorter wait time if s/he checks.

Best wishes

Chris

[jay87]

Yes many people have been frustrated regarding the service they provide. As others have said they are under great pressure, and I feel that overall they provide as great service considering the fitting is free and you pay a fixed amount for lenses such as sclerals which cost around £200.

Maybe you could ask to be transferred to a different NHS hospital eye clinic, do you have any others near you? I for example have Cheltenham or Glouceter, or I guess I could travel to Bristol.

You could also go private for some GP contact lenses. I think regular GP contacts are around £120-150 a pair, and some opticians fit them even if they don't specialise in KC. There's also the list of KC friendly optometrists on this site

Good Luck!!

[jay87]

I see you've already had contacts fitted, hope they get better for you and the vision improves. Sometimes quite a bit of tweaking is involved at first, but you'll crack it

[Kris]

Hi All,

thank you all for you advice and encouragement! I am exploring all the different avenues now, including speaking to the hospital's patient liaison team and talking to my GP to possibly get referred to a different hospital that may have more experience.

I have also managed to get my private insurance, which at first wanted nothing to do at all with my Keratoconus, unless it was a corneal graft, to now agree to an initial diagnostic appointment and consultation with a specialist of my choice.

Has anyone been to see someone private in the London area that they are happy with? The internet gives me lots of results, but it would be great if there was someone who had some experience?

thank you again for your replies,

best,

Kris

[Hayley]

Kris,
I saw Rakesh Jayaswal at Guildford Nuffield, very nice man who took alot of time to explain options to me. Would definately recommend.
Hayley

[GarethB]

Another one to try is David Jury, I know quite a few optometrists that would recomend him as well as patients of his.

[Kris]

Thank you all for your recommendations, it is much appreciated!

thanks,

Kris