just seen the consultant..

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

User avatar
matt28
Contributor
Contributor
Posts: 35
Joined: Thu 29 Jan 2009 9:36 pm
Keratoconus: Yes, I have KC

just seen the consultant..

Postby matt28 » Sat 28 Feb 2009 5:33 pm

As the title suggests ive recently seen my consultant at the Bath R.u.h who is going to refer me to St Thomas's in london with regards to possible new avenues including collagen cross linking which sounds promising , he also suggested dependant on what St Thomas's suggest he may then refer me to Moorfields due to there ability to offer a wider range of contact len's...all promising stuff is just the waiting part that i dont like as im sure others dont (paitients!! :D
).. has anybody had any personal experiences of either St Thomas's or Moorfields?...in the mean time im going to the R.u.h on thursday to hopefully sort out a new lens for the time being.... :lol:

Excuse my spelling..lol :shock:

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: just seen the consultant..

Postby Andrew MacLean » Sat 28 Feb 2009 5:53 pm

I think that a consultant referral may get you seen sooner.

All the best

Andrew
Andrew MacLean

User avatar
rosemary johnson
Champion
Champion
Posts: 1478
Joined: Tue 19 Oct 2004 8:42 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East London, UK

Re: just seen the consultant..

Postby rosemary johnson » Sat 28 Feb 2009 8:38 pm

St Thomas's - no, not personally.
Have had two friends who spoke highly of St T's having been taken in there having heart attacks. No idea if this has any resemblance to eye dept.
WOuld be very interested to hear what you find when you get there - please do report back on how you get on.
Moorfields........ well, you'll get plenty of practice at waiting! (I think they are supposed to be revamping their appointments system, but it's taking some time).
They do have a contact lens section, where (on the right days) you'll find the famed and renowned Ken. And his colleagues.
Not got any experience of CL services other than for sclerals. though I'm sure there's plenty of others here who do and will chip in.
The Friends cafe do a not-bad cup of black coffee for 60p and the chocolate cakes are all too tempting to pass the time inthe waiting "room" (all open plan like an airport departure area).
PM me if you want more.....
Rosemary

kawboy18
Newbie
Newbie
Posts: 1
Joined: Tue 03 Mar 2009 11:39 pm
Keratoconus: Yes, I have KC

Re: just seen the consultant..

Postby kawboy18 » Tue 03 Mar 2009 11:49 pm

Do the NHS perform the Collagen Cross-linking?
I have just been to examination at Morefields, and the doctor said that I can only get the treatment at private cliniques (which will cost me around 3000£)..

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: just seen the consultant..

Postby Andrew MacLean » Wed 04 Mar 2009 7:12 am

kawboy

Welcome to the forum. In some places CXL is under trial on the NHS, and the treatment is available free for patients who are selected as suitable. The treatment has yet to be approved by NICE for England and Wales, and the Scottish Government has also still to approve it.

So I am afraid that the answer is that CXL is sometimes available on the NHS. If it clears the Ethics hurdle, then it may be available more widely.

Andrew
Andrew MacLean

alison falshaw
Regular contributor
Regular contributor
Posts: 57
Joined: Tue 14 Aug 2007 1:03 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: just seen the consultant..

Postby alison falshaw » Wed 04 Mar 2009 3:38 pm

Hi,
That seems to be expensive to me. My left eye is suitable for CXL and I was quoted £500 at the hospital I have attended the past 18 months. As its not aprroved by NICE we wouldnt get funding.

If you have to pay privately for it then I would think that you can go to any NHS hospital which is providing the treatment, irrespective of where you live?? Maybe I have that wrong??

ALi


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 26 guests