Help with Eyecare

Lennon

My OH has been diagnosed with a degenerative eye condition called Keratoconus. She's had an initial appointment at the hospital and they are booking her in for an operation which will aim to try and prevent if from getting any worse.

They also referred her to an eye clinic/specialist opiticians as she needs some special contact lenses. The opitician have said she needs special hard lenses and various 6 monthly treatments and the overall cost of this is going to be around £55 a month.

She mentioned to the opitician that we couldn't really afford this and she just sort of shrugged and didn't offer any kind of advice. We are not entitled to any benefits at all but I read you can get NHS vouchers for complex perscriptions but i'm not sure what this covers ?

It's going to be an additional expense we are really going to struggle with. The budget is already streched to near the limit. We are already extremely careful, never holiday, never go out etc and due to careful management we just about cope.

I don't really get why the NHS has referred her to a private eye care clinic but it seems to be we either pay or end up not be able to see!

Anyone any advice about how i might be able to get some help to pay for this?

WillowCat

This:
https://www.specsavers.co.uk/ask-the-optician/contact-lenses-for-keratoconus/
seems to indicate that it is possible for the NHS to pay the bulk of the costs when you have been referred by an eye hospital.

This:

http://www.keratoconus-group.org.uk/forum/viewtopic.php?t=5785

is also an interesting read, it seems there is much confusion and different practices in different areas. The majority of responses seemed to indicate that the maximum cost would be £52 per eye, and that would cover all you need for 12 months.

midnight_express

What is the £55 for ? I have keratoconus and I am a patient at Moorfields. All I pay for is the lenses at approx £104 a pair and the cleaning and soaking solutions. The lenses usually last a year or two. I've never spent anything near the amount you've mentioned.

Lennon

I don't have the full details to hand as i'm at work but from memory it's £17.99 per month for lenses. Then they have told her she needs to pay £120 every 6 months to have something done to her tear duct to stop her eyes drying out. Then there was £100+ for something else every 6 months which I can't remember now.

Thanks for the links and info, it sounds like we need to do some more investigation into this.

GlasweJen

It sounds like your partner is being fitted for rigid gas permeable lenses and needs punctal plugs to stop dryness.

I don't know how the system works elsewhere but my local health board (in Scotland) does not have the department that would fit RGPs for kerratoconus so those patients are seen in the neighbouring healthboard. The ophthlamologist will see the patient here and then refer to the neighbour (who have a specialist eye hospital) for surgery and any lens fittings.

99.9% of the time the lenses are measured and prescribed by a specialist at the hospital eye service. On the rare (once in my career and I think it was a mistake) event that a patient is getting lenses in the community they are issued with a HES voucher value J which is worth about £200. This can only be used for the lenses themselves, not for aftercare appointments or solutions.

Punctal plugs are only prescribed by the ophthalmologist and fitted in the hospital environment. If your case isn't severe enough for NHS treatment (and hell would freeze over before most people with dry eyes would qualify) then you need to go private. They cost £90+ for us to get in so to get them inserted privately is quite expensive (no idea how much we charge as I've only done it once sorry). They can fall out within a week to a year depending on how lucky you are.

ETA if the hospital discuss lenses but say that the px isn't ready for them and the px then goes privately to get them sooner then this will be charged privately. the hospital wont give a voucher for lenses that have already been dispensed in the community.

Lennon

It sounds like your partner is being fitted for rigid gas permeable lenses and needs punctal plugs to stop dryness.

Thanks, yes, that sounds like it pretty much covers the situation. With regards to the dryness they have said she only needs this due to some long term medication she is on which apparently causes dry eyes. They didn't explain what medication this was and I think she was in a bit of a shock about the whole situation do didn't follow it up by asking for more details. She's never had any problems with dry eyes previously.

The only long term medication she has is asthma inhalers (she is taking anti depresseants but she's only been on the current ones for a couple of months). So she wasn't even sure if the plugs for the dryness were really required or whether they were just trying to make extra money.

GlasweJen

If her eyes aren't bright red, sore all the time and feels like there's a foreign body in there then they're not ready for plugs.

If there was a genuine need (not easy route) the px should be referred for treatment at the hospital. In the meantime there are thousands of dry eye treatments on the market and GPs can be asked to prescribe things like Systane for chronic dry eye.


In terms of the lenses I would hold off and speak to the hospital. If surgery is on the cards she will probably be told to not bother as after the surgery the prescription will change. Traditionally it's a corneal transplant for kerratoconus but a newer procedure called corneal cross linking is really showing much better results.

xylophone

http://www.moorfields.nhs.uk/condition/keratoconus

http://www.bartshealth.nhs.uk/media/press-releases/2014/august/all-eyes-on-new-sight-saving-treatment/

might be of interest.

Lennon

Thanks for this, some really helpful posts, it all makes a bit more sense now.

It's the cross linking which she is waiting on from the hospital.

In the meantime the hospital referred her to the private optician who has recommended her a hybrid lens with a soft outer and hard center for one eye and ordered high end soft lenses for the other eye which is short sighted.

The exact costs were:

£17.99pm for one eye soft lens.
£52.40 every 6 months for hybrid lens.
£150 every 6 months for the plug.

She basically had a letter from the private clinic saying they had received her details from the hospital and asking her to arrange an appointment and they recommend all of the above. We are thinking it sounds like she only really needs the hybrid lens for now. She's happy to wear normal glasses but they didn't discuss anything about this or any other options.

GlasweJen

If your other half is happy wearing glasses this shouldn't be an issue, if lenses were clinically necessary the hospital would have insisted on them.

RGPs feel like you've got a bit of plastic in your eye, it takes a lot of perseverence and a lot of wearers drop out as they feel awful - and this is coming from someone who wears them!

As your other half didn't have any dryness problems before I think you may have been oversold a touch by an over zealous optician. I'd never say for sure that this is the case without seeing your wifes eyes first but in this instance I would really seriously recommend getting a second opinion before going ahead with this optician.