UK Keratoconus Self-Help and Support Association

Hmmm do i dare risk putting another post on this topic here after we lost the other one?! LOL!!

I guess i will, as it's where i am right now, so that's fine haha

Personally i have no real problem with the NHS, i mean i do work in one after all. I just have a MAJOR problem with the waiting lists! After waiting a year and then having to cancel as i couldn't go for a fitting with ulcers (and i was in Wales), i just don't think that i can wait until September. And as this is the end of September, thats pretty much October lmao!

In fairness it is not the staffs fault, they are very under staffed, but that doesn't help us. I think as well that it is only because i am waiting for sclerals, if i wasn't it wouldn't matter, as i would have seen someone else! I have always been seen in a hospital back home and then referred to a high street optometrist to fit lenses. So really i'm not that happy with being stuck in the middle of playing waiting games with Moorfields, that has too many patients and not enough staff!

So, have decided to go private instead and get lenses there so that i can see while i am waiting! Do i think i am going to get better care? No, not really, but it isn't about that. I don't have a problem with how the staff work. It's just i know that if i get new lenses, and i have a problem with them, i will have to wait three to six months to see someone at Moorfields. I can't afford to take anymore sick leave off work, financially and also in upsetting my boss lol! Not forgetting my falling sanity!!

I really don't see why we have to have these lenses in a hospital anyway? What is the benefit of that? Can't they just see us there and then refer us to a high street optometrist to get lenses there? And then just check in with us once a year?!

My old practice in Wales are starting to see patients for sclerals outside of the hospital as they know this causes major problems, and it takes up appointments that could be better used in seeing new patients! It also means that any problems can be sorted out quickly.

It's all just frustrating and time wasting. People complain so much about 'A & E', and in the last few years we now have a four hour 'see and treat' rule, which means that everyone has to be seen and treaqted in this time! This has really cut down waiting times so much, haha though don't quote me saying it if you are longer than that!!

Maybe someone needs to go along the same lines?! I'm finding it really hard here to play a patient, when i would much rather just see them in work! But there is the one rule in every care setting, being that care and treatment is undertaken 'in the patients best interests', well where is ours in waiting so dam long and being off work?!! Hmm ... maybe if i am looking for a patients advocate here, i should find one in myself ROFL!

Hmmm ... just wanted to complain! LOL!

Love Sweet X x X

There was a discussion on similar grounds at the conference at the weekend.

The problem appears to be political (aren't they all? ) insofar as the govt want to be SEEN to do well for a lot of people. So cataracts are treated very quickly, despite being a gradual thing that may not cause a problem for a while; and KC goes to the bottom of the budget because it doesn't effect many people.

Does anyone else have a view on this?

John

I agree with you, it is political..and its all about getting waiting lists down the fastest!

However, that still doesnt address how the delivery of Keratoconus Lens fitting cannot take please out of the hospital.

I see very little reason to have to go to Moorefields for a lens fit; as in all honesty it seems a waste of hospital resource and space.

If this was "outsourced" in a correct manner; whereby Opticians could enroll in some kind of Government initiative to fit Keratconus affected people; they would go along way in addressing the existing concerns.

However, this will cost money!! But its no different to getting a free eye check if you are diabetic,....ie the optician claims back a certain amount of the cost.

Clearly KC fitting takes some time and resource and thus affects the Optician's practice availability; so they could introduce some kind of flat rate charging system; but enough to allow for a cost effective solution for Opticians to offer.

I know that I would be more than happy to pay FULL PRICE for lenses if the fitting stages were on this kind of system. As the existing pain in getting lenses is around actually getting the appointments and then having the CL fitter actually spending a decent amount of time on us.

On another issue, there are also a number of trainee lens fitters that see KC patients across these hospital units.....this is not ideal......but I do understand that they need to train somewhere!...But to me; having had Advanced KC; I dont want to p*ss about with some less experienced Len Fitter getting excited on his/her first few KC cases........

But is anything going to change? I highly doubt it.........its all controlled from the top...and if we still have a Cancer Treatment lottery which is far more serious......where are we in the pipeline!.............as I say....you do get what you pay for...............and unfortunately sometimes the ppl that are trying to help you have their hands tied by red tape and unintelligent management.

As Sweet said,in areas where the local hospital hasn't got an in-house fitter patients are usually referred to a community optometrist that the consultants know/trust and this can work very well.I know one large NHS trust where patients are issued with a form and asked to take it to any optometrist of their choice for fitting and I don't think this is a terribly good idea either.I say this because I've seen too many patients with excessive scarring from badly fitting lenses over the years.Hence I feel fitters must know what they are doing and must take great care and pride in their work.There are obviously benefits to been seen at a hospital clinic as well eg Consultants are around if a second opinion is needed, or drops need to be prescribed.So, what's the solution to the waiting list problem? I really don't know! More optometrists need to get interested in complex fittings, but as Lynn has pointed out before, there isn't much incentive as patients usually end up in a hospital clinic.If a hospital has its ow in-house fitter one can appreciate their reluctance to refer patients to community optometrists. So, I suppose they have to somehow attract more optometrists to work on a sessional basis.We now have compulsory CET (Continued Education and Training) and if optometrists doing sessional work at hospitals could have their hospital work count towards CET points they need,this might help. I am not even going to mention the politics of it all as you all seem very clued up,but I really don't think funding is the only problem

Hi all,

When I was diagnosed with KC I was seen privately using the insurance my husband had through his company. All my appointments and lenses were covered but this eventually was stopped although should I need any treatment, ie a corneal graft, that will be covered. I have carried on going private simply because of the waiting lists on the NHS and also I know I will see the same consultant each time. I don't like doing it, it is expensive, especially the cost of sclerals, but my feeling is this, these are my eyes and I need them and for me waiting is not an option. Other things have to be sacrificed. I feel for those who aren't able to afford to go private as their sight must get worse while they wait.

It is about time the NHS shed most of its chiefs and employed more nurses and doctors then maybe, just maybe, everyone would get seen quicker and private appointments need not happen. It is also time that insurance companies recognised the fact that we who have KC need contact lenses for a reason and not for cosmetic purposes and therefore allowed us to claim for them.
I also think that all the solutions we have to use should be available on prescription as well.

Who can we write to on these matters?

Lesley

You hit the nail on the head there!...Its the eyes!...Theres nothing more important!.....and thats why sole reason of getting majority of my treatment private.

If you change medical insurers you are not coverd for existing conditions. This now would appear to be the case if you stay with the same insurer. Back when I was first diagnosed, everything was paid for, lenses, solutions, including the graft and after care.

I am still with the same insurer with a slightly higher level of cover and is my KC coverd? NO. It is all on the NHS now and the guys in Coventry are great.

My feeling is that by having lens fitting outside the hospital is that an element of communication between specialist and optom is lost. When I see the specialist, it is always done to coinaide with the optom so I go straight from one to the other. They all know when I am coming.

The other problem that was raised at the confrence was money. Where I live, there are small practises that know about KC but are not as well kitted out to deal with KC due to costs. They are happy to fit lenses to grafted eyes and to moderate cases of KC. None will treat me with grafted eyes that have developed KC in the old graft.

I may have to pay for my lenses through the NHS, but they are subsidise, but now I am on their books and they are familier with my case, so far not had to wait more than 4 weeks since the initial 6 month referal time which was largly due to my then GP not reading the letter from my optometrist properly.

Wrote a letter of complaint and suggested that she should perhaps visit the optom or get help reading. Not had a reply and that was nearly a year ago.

Gareth

Another point I forgot to mention before is shortage of space in Hospital Eye Clinics.Not many hospitals have full time contact lens departments (except obviously Moorfields,Manchester Eye etc.) and rely on practitioners attending on a sessional basis.As ophthalmology is such a diverse speciality now, most hospitals have more consultants and run more clinics than before in often cramped conditions.This could make it difficult to hold more contact lens clinics simply because there is no room for the contact lens practitioner to work! Things will probably improve as clinics get extended, refurbished, etc but it all takes time.I don't envy hospital managers as they have so many targets to meet and seem to be always in the red! Their first priority is to get the waiting lists down and unforunately contact lens clinics are not necessarily at the top of their agenda.