Son with Keratocounus

[Annie]

Hi all,

Not posted for a while but have been reading other posts. Don't know if anyone remembers, but my son and I went to East Grinstead Hospital to see the top eye person there about a corneal graft? Anyway, when he was seen by the consultant it was agreed that he should have the graft because my son is nearly blind in his left eye due to so much scarring. We were told that the wait would be 6 months but he could go on the short notice list, which means a possible 3 month wait.

Both my son and I rang the hospital to find out where his name is on the list and was told it would be a year. Also his name wasn't on the short notice list. The hospital have now put his name on the short notice list but the wait is a further 6-9 months.

My son is getting quite desparate because he can't see with his left eye and it is affecting his work. He is worried that in a year's time he will lose his job. He is a HGV mechanic.

Could a graft be done privately and if so, does anyone know of the cost?

Annie

[house]

Yes you can go to your own GP and ask him to refer you
to your nearest private hospital that do cornea grafts

you pay for a consultation cost me about £100.00
and they tell you how much it will cost for the op.

to be honest worth the money had about hour with him.
(For the consultation)

if you have private medical insurance that will help you.

-----------------------------------------------------------------------------------

now below is naughty I know.......it was not planned just happened.

now I have been this road! and was told could be up to 13 months before
I would have my graft done ( and time was important for me)

So I saw a doctor privately who turned out works for NHS too and privately
said I needed a cornea graft soon.......

any way I jumped from my original NHS consultant to the private doctor
but got to see him after my private consultation at NHS hospital and he moved
me forward.

to be be honest think it depends what consultant you see, and how bad
the situation is.

I was very frank at the private consultation about my situation
and felt with my own NHS doctor, they didn't seem so interested.
Also with my regular NHS Consultant clinic I would just see any one.

Really the out come for me was to get under one consultant to,
and he felt I should have a graft.

regardless had to wait six months for the op, and he moved me forward.

[Andrew MacLean]

Private medical insurance does not always cover keratoconus, so check with your contract provider.

To be honest, the delay may be caused by many things, from the availability of donor tissue to theatre space in your hospital. A less expensive way of tackling the problem might be to ask whether there is another NHS Hospital that is experienced in this sort of surgery where the waiting list is shorter. I know that it is nothing like as long in this part of the country.

If it is a matter of the availability of donor tissue, then going private should give you no advantage; the human tissue for transplant people are very strict about not giving priority to private or public sector clinics or hospitals.

All the best

Andrew

[house]

private medical insurance can help with a cornea graft op, been there!
looked at it! depends what insurance you have!

I found out it depends what consultant you are under and
how they look at the situation.
Getting a 2nd opinion can help, it did me!

[crakerjacker]

Hi Annie

I have had my graft done private. I am fortunate to get private medical cover through work so I only have to pay a maximum £250. I am not sure on the exact cost as the hospital dealt directly with the insurance company. I do, through invoices being sent to me by mistake, know a few costings. I had my graft done at the yorkshire eye hospital. Not sure if they would be able to give you cost over the phone but might be worth a try. They have a website with the telephone number on.

Here is what I am led to believe the price is for a few things. Don't hold me to it though cos might be off the mark and not sure whether it is standard or differs.

1st consultation - £150
Subsequent consultations - £80 - you have quite a few of these. I've had about 6 so far. 3 post graft, 3 pre graft.
Local anaesthetic - £320
Cornea Graft - £1000, i received a letter from the hospital that was supposed to go to the insurance company and this is the figure that was on there. Not sure whether that was the full cost or part cost.

Thats all I know i'm afraid. If you give them a call you may be able to get an idea of price. Or try a private hospital around your area.

Not sure whether you already know this but I have been doing a diary over the past 5 weeks of my graft which you might want to take a look at to get an idea of what to expect. Its http://www.mycorneatransplant.blogspot.com

Hope any of this helps

[house]

another tip

your own gp has a list of the local private consultants
and should tell you who is best to see.

I went to my gp and he went through the list and
found the most experienced for me and I paid
to see him private.

Also with being referred by my GP it carried more wait
then just contacting a private hospital.

the consultant took on board what my GP said.

[GarethB]

Regarding possible loosing a job because of the need for an operation, get in touch with Action for the Blind; RNIB and Citizens Advice to check the legality of such a thing happening.

A couple years back I went a year without one of my cars being looked at as the garage would only let the senior technician work on it due to the rarity of my car. Unfortunatly he got a brai tumor and spent a year off work. Now he's back to full health and back working again. The palce he works at is a small local garage so nothing to do with a big chain or franchise.

KC is also recognised by the Disability Discrimination Act so your sons employers need to be very careful to make sure they do not breach it.

[Annie]

Thanks everyone for your replies. My son is on holiday at the moment, but I will show him the messages when he comes home.

I also notice the AGM and I think he might like to go to that, but I will have to check with him first as he works shifts.

Crackerjack, We have been following your blog. It has been very good for my son to see what might happen to him.

Annie

[crakerjacker]

Hi Anne

Just got another bill through. £1850 for hospital services! Was only there half a day.

God bless insurance thats all I can say.