NHS procedures questions

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MB22
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Joined: Fri 04 May 2012 1:07 pm
Keratoconus: Yes, I have KC
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NHS procedures questions

Postby MB22 » Fri 04 May 2012 1:20 pm

Hi

I hope this is in the right section.

First off I'd like to thank everyone for the forum, I have only been browsing for 15 minutes and already I have had a lot of weighing questions answered (especially by the very helpful FAQ section), I appreciate it.

I would appreciate it greatly if anyone who has the knowledge or experience could help me with a few questions. Thank you.

Briefly about me: I am 23 years of age, I was diagnosed with Keratoconus during an eye test at an opticians in March of this year, although I suspect the condition started at least 18 months ago. Prior to KC my eyesight was a healthy 20/20 (having been better a few years prior) but now it fluctuates between mildly hindered and significantly hindered. I visited the eye treatment clinic at my local hospital (West Suffolk Hospital in Bury St. Edmunds) yesterday for the first time and I was left confused and frustrated with the experience so I need help in understanding a few things.

The consultant confirmed the diagnoses and recommended contact lenses (glasses are of no use to me), he also mentioned 'a lot of coming and going', how does the contact lens system work, do I have to get new contact lenses frequently as the eye shape changes-how would I go about making appointments for new contact lenses? He also mentioned other 'treatment options'-without mentioning what they were, what are other treatment options available and how much better are they? At the end of the brief consultation (lasting around 4 minutes) I was given a form that I was told to give to a receptionist, I was told that I would have an appointment with the contact lens clinic, is this part of the hospital? And for those who have gone through a similar thing, how long do I have to wait to get an appointment? Finally, I am entitled for help with NHS treatment costs (free eye tests and glasses vouchers), how much is it likely that I will have to pay after the voucher?

I would be very grateful to someone who could help with my questions or direct me to the right place, I am not being 'lazy' in posting them here rather than doing the research, but I have limited time and I find it hard to accept the findings of my own research without being answered, again, I appreciate it.

Thank you again.

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Elizabeth Mair
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Keratoconus: Yes, I have KC
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Re: NHS procedures questions

Postby Elizabeth Mair » Fri 04 May 2012 7:30 pm

It can feel like a minefield when you are first diagnosed with keratoconus.You wonder how your vision will change and what treatment is best.
Contact lenses usually make a huge difference to your vision.The hospital eye service does prescribe contact lenses. You get appointments for that department just as you would for any other hospital department.It varies how long it will take to get your first appointment.Some people rush out to private optometrists but my experience of hospital contact lens departments are that they are very experienced in treating people with irregular shaped eyes, so I would stick with them at the beginning. Most people make a contribution to the cost of lenses(just over £50 for each lens) unless on benefits or excluded from NHS costs for another reason like children.When I needed changes in lenses my hospital only made one charge a year, regardless of how many lens changes I needed that year. Try lenses first.
Other possibilities include crosslinking or/and intacs but contact lenses may still be needed.
Some people manage with contact lenses for the rest of their lives.A small percentage end up needing a corneal graft.
If you send me a PM I can add you to the KC group membership list and send you a booklet about keratoconus. Please don't post your personal contact details on the open forum.
There are also local Keratoconus support groups -Birmingham, Leicester and London, plus Scottish groups

Jezzafletcher
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Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: NHS procedures questions

Postby Jezzafletcher » Fri 04 May 2012 8:16 pm

A really big welcome MB22 - always good to have new blood on here - whoops wrong site.... Must log on to Vampires Anon!!!
All the advice given above is spot on and I can offer little else except to say Learning about KC & living with it is a bit of a long term thing... If I could do it all again the only thing I would do differently is take a deep breath and slow my hunger for knowledge and answers down a little. The reality with KC is either your life can revolve around it or you can agree to share your life with it. There are no definitive answers - it's specific to each of us and behaves in different ways. This group is great for getting support and sharing common experiences but be take it one bite at a time and learn by your experiences first and those of others second... It's early days.
It's great to have you on here!
Best wishes
Jez

BurnTheAction
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Posts: 55
Joined: Mon 04 Aug 2008 8:37 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: NHS procedures questions

Postby BurnTheAction » Thu 17 May 2012 9:31 am

Welcome along to the world of Keratoconus!

The NHS system does a great job but there are times when it can very frustrating when dealing with KC

At Moorfields St George you pay £54 per RGP lens, around £110 all in with postage. If the fit of the lens is then changed at a later date the replacement will be free (RGP lenses were all free a few years ago...sign of the times)

Soft lenses to piggyback with are free (aside from postage)

Appointments can range from 6 weeks (usually over booked) to 3 months. If things are going well I have a corneal clinic appointment every 6 months and a contact lens clinic every 3 - 6 months. Appointments often require me to take off a whole morning or afternoon from work as there are generally lengthy waits to see the consultant...last week i was seen at 11.40 for my 9.20 appointment

When administration breaks down (as it has for me at Moorfields recently) it can be very frustrating . The length between appointments is also quite difficult at times, 6 weeks (which seems to be the absolute soonest they can see you for a contact lens fit issue) is a long time to wait when a problem has arisen and you are struggling with work.

Private care was amazing when i was really struggling two years ago but i simply couldn't afford to keep it up

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Andrew MacLean
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Re: NHS procedures questions

Postby Andrew MacLean » Thu 17 May 2012 11:55 am

I guess that the problem here is that the National Health Service has such wide regional variations. The common experience in London seems to bear no relationship to the ordinary experience in Glasgow or even Manchester.
Over time many of us have. Scone ennured to the little eccentricities of our local clinics.
Every good wish as you begin to chart your local labyrinth, but do not imagine that things will be the same if you ever move.
Andrew MacLean


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