Funding lenses etc. (long post)

[Paul Morgan]

Here's a question for you all that's been bothering me for a while.

I wonder what the situation is with regard to paying for lenses etc.

My situation is that my hospital (Taunton) has paid for my first set of RGP lenses but after that I'm on my own. At a price of 80-90 quid a lens that's quite an issue.

At the time of getting them I was delighted, to be honest I was so shocked I guess at the whole thing (me needing contacts - nah!!!) that I was just swept along with it all.

Now however, the more I think about it if that is the situation across the country, that has to be deeply unfair.

Lets face it, we have lenses etc because our eyes don't work properly - they are damaged to all intents and purposes (put in layman's language). Let's draw an analogy - if our legs didn't work, we'd get a wheelchair, if an arm was amputated, we'd get a prosthetic limb...and there would be no charge.

What then can the justification be for not providing a reasonable supply of lenses FOC, which are essential to allow us KC'ers to live normal lives

Tell me what is your situation, is this another example of the postcode lottery, or is my situation echoed across the country...or am I luckier than most

Then there has to be the topic of the necessary solutions that we all have to have. As far as I am concerned lenses are useless without them so should they not be provided too...or at least should there not be some help

I reckon I spend another fiver a week on these. Not much for me, but I am lucky, this may be a huge amount for some, and I do not believe that it is fair in any way.

I want to gather some of your experiences, I feel passionate about this to the extent that I would like to take it further. But...I need some facts to help me, and possibly some suggestions as to who to appeal to. I could speak with my MP who is a decent chap and always willing to help. Shame really as my old MP was Paddy Ashdown who had a bit more clout than most, retired now though.

I look forward to hearing from you. I promise nothing, but I like a challenge and it may be I can make a difference.

Lastly....does this group ever campaign on this sort of issue

Cheers all

Paul

[jayuk]

Paul

This issue and the whole NHS issue has been spoke about in various forms over the years here and its led some, what I would say, excellent posts; and some not sooo good.

However, you make valid points!

MEH for example subsidises the lens costs, I beleive its now about £90? or there about. But clearly the lens solutions are our responsibilities.

You also make a very good point on the "no legs" example, however its all about perception

Having KC, we all look "normal". This you may think is a silly point to make, but its hold alot of merit. Its through this lack of understanding on the condition that we have to endure these costs. I am surprised that people in power (I mean the practice management and above) at these eye units havent actually progressed these points as they are the people whom witness what KC does and how it can render a person useless WITHOUT there lenses.

However, I dont think that the NHS is in a position to provide FREE solutions across the board. Pure and simple....I would suspect that there are more people who would require lens solutions/lenses on NHS then there are who would require a prosthetic leg.

Whilst this isnt a reason NOT to provide this on the service, its one that holds alot of weight.

Its also kinda odd that when buying these solutions at the pharmacy at MEH, it costs more than say going to another place!....I would have thought that the solutions would be subsidised more.

I have been in positions previously where I had gone for a lens re-fit and was told that they wouldnt change the lens as another line on the chart wasnt enough to have a lens change?!?!....stuff like that really p*sses me off; as initially the only reason why I went to Moorefields was becuase of its reputation...yet when you get there and are treated through the system you get another perspective!..the REAL perspective!

But whats more annoying is that people working in these places know of these issues but noone seems to take it up to the higher levels........but there you go!....guess everyone needs to watch there own backs and Im no different!

J

[Janet Manning]

Hi Paul,
I think charges are a postcode lottery! I have never had a free set of lenses. When I lived in Surrey, I paid £80 for a set of soft perms, but each time they split, which they did often, I got a replacement free of charge. I don't know how long this would have gone on for, as I moved.

I now live in Oxfordshire and pay £48 per scleral lens, but at least they last quite a long time. I get my saline on prescription along with eye drops, so it pays me to buy a pre payment card each year - about £96. I buy the Miraflow from Postoptics now that Tesco no longer stock it. Allowing a set of sclerals per year and about £36 of Miraflow + prescription certificate, that's £228 approx per year. This compares favourably with daily disposable lenses or a new pair of glasses. Anyone on income support would get their prescriptions free anyway, though I'm not sure about the lenses, but suspect they would be free too. If that's the case, I don't think we have too much to complain about.

The other things you mention eg. wheel chairs are not necessarily completely free to people who can afford to pay. My father gets lots of aids from social services, but they are on loan only and have to be returned if he no longer needs them. Dentures and hearing aids are not free either until you are post 60.

Does anyone know if lenses are free post 60 - if so I don't have long to wait!!!!!

It would be interesting to hear what others experience in other parts of the country.

Janet

[Ali Akay]

Hi Paul
This is an area full of confusion and various hospitals interprete the rules differently. As far as I know the situation is that hospitals are allowed to make a charge for contact lenses under Section 78(1) of the National Health Service Act 1977.The statutory charge is revised on 1st April every year and currently is £48 per lens. Hence no hospital should charge more than this.The rules are open to interpretation when a replacement lens is required. Some hospitals charge £48 for every single lens supplied, but most make an annual charge ie dont charge for lenses supplied within a twelve month period due to clinical changes in fit and prescription, but usually charge for replacements due to loss or damage. There are also some hospitals who supply lenses free of charge for "historical reasons" ie they never charged for them before and they feel this works for them.

Exemption categories are roughly same as exemption from prescription charges EXCEPT people over 60 aren't exempt unless they receive a DSS benefit eg Pension Credit. People with pre-payment certificates or exemption due to pregnancy aren't exempt either.In other words, it's income based exemption except for children and under 19s in full time education.

Supply of contact lens solutions is another minefield! The same NHS Act states that the hospitals providing contact lenses are obliged to provide solutions as part of the care provided, but I know that some hospitals dont have the necessary systems in place for the hospital pharmacy to stock the solutions.I dont believe this is a cost cutting exercise, but probably red tape problem. Normal prescription charges and exemptions apply.

I sympathise with your wheelchair analogy, but sadly NHS is full of such anomalies eg patients who need thyroxine can get it free of charge but patients needing a lot of other equally crutial medication have to pay for them simply because the list of exempt drugs has never been updated on cost grounds or people at DOH dont feel it's high enough priority or not "sexy" enough. Also bear in mind that people who need glasses/contact lenses for eg high myopia dont automatically get them free either and, although they dont have the particular difficulties of keratoconus, they would be equally handicapped without glasses/contacts.
Perhaps we need a keratoconic MP to push for changes! My worry is that if the guidelines are revised to clarify the areas of uncertainty, it might result in increased charges for all! So, perhaps best to leave well alone and accept it as one of those things! Not that I am a cynic or anything!

[GarethB]

My lenses cost £50 each through the NHS subsidy, but the subject of solutions is harder.

Many of us can only tolerate certain solutions and as the NHS has a tight budget to work to, they will probably only be able to provide the cheapest which is why I can not get Systane eye drops on the NHS as they say it costs too much.

The only solutions I can tolerate are the Boston range, they are not the cheapest or the most expensive.

By buying in bulk from postoptics, my lenses on average cost £2.50 per week. For this I am including Ststane (1 bottle per month), Saline (every 2 weeks), Protein remover (1 box every six weeks), three month lens pack (actually lasts three months). I can save more as the lens cleaner lasts longer then the conditioning solution, so cleaner can be made to last longer and conditioner purchased in bulk as single items. For hygiene, as the conditioner runs out, I chuck its partner cleaning solution. In the past 18 m onths, if you include the initial lens costs my £2.50 has risen to £3.80 but I am still on the original lenses from 18 moths ago.

[Carol Vines]

have never had free lenses apart from when i was still in education but since 17 i have always paid, used to get free eye tests but they stopped that in the 80's.

so i now pay 82 quid per lens, 25 quid every 6 months for eye tests, approx 7 quid per month for saline/solutions and protein tablets. a refit lens costs 135 quid but to be fair it takes many visits to get the fit right.

it probably costs me on average 220 per year for my vision; more if i lose/damage a lens. however my sister in law chooses to wear monthly disposables as well as her glasses; she pays 15 quid per month for the contacts which is 180 quid per year plus she then has to pay for her glasses and eye tests.

i haven't been to our local hospital for 3 years now, very disappointed with the level of service there; that is part the postcode lottery

problem is the nhs is overstretched, also as already pointed out you don't automatically get wheelchairs etc; i broke my arm and leg 2 years ago and we had to hire a wheelchair for 11 weeks, the nhs would not supply one.

[GarethB]

Carol,

Market Harbrough is only 25 miles from me, which hospital do you go to?

I go to the Coventry and Warwick which is 15 miles away from me and the service is as excellent.

[Carol Vines]

hi gareth,

i go northampton general; my consultant is ok but i usually only get to see an understudy there as i'm a long standing case.

have been asked to put my glasses on, which i've never worn, have had to explain many times why i can't wear glasses; most the time all they do is get me to read the chart say ok come back in 18 months and thats it.

fortunately my optom is brilliant, i wonder if your hospital would fall in my catchment area; do you go regularly, etc

[GarethB]

Since June I have had to see the optom every month as my lens has taken to migrating across my eye to a very uncomfortable position.

This time I had an Optom lecturer from Aston Uni, 2 of his students and the optom all in a 3 x 1 meter room looking at my right eye becasue the way my KC has developed post graft is quite unique!

Going to try a new larger corneal lens that will protude over the iris so as I need them tinted, will have a blue halo round my brown eyes. The problem they are having is getting a lens to sit properly over the bow tie shaped cone and so the graft scar is protected.

I am on first name terms with everyone and on the odd occasion we have all gone for lunch together just to have a break from the lens fitting.

Rarely see the doctor, but as my KC appears to be stable for 18 months as the new topogrophy shows there is no-need. Just have bizar reactions to lenses which is out of the doctors remit.

If anyone can get refered to Moorfileds if they ask to be and are prepared for the wait, I would think getting referred to Cov & Warwick is possible. Most of the nurses are OK, just the odd one in eye casualty that are a pain in the butt. Only had to go there twice.

[jayuk]

Interesting opinions.....and on the back of that I think as part of a KC management road map! its always good to have a Optician whom you see regularly and whom you have respect and value for throughout the whole KC cycle

Whislt this can prove hard, in terms of finding one, once you have there worth there weight in gold!!

I have seen the same optician for about 7 years, and have had to see others on an occasion when they have a speciality in other forms of lenses, however its good to work with someoe whom has seen your KC from the start and can help you make decisions on where to go next!.