UK Keratoconus Self-Help and Support Association

Hello Peeps,

I haven't been on the site for a while: life is taking me in a new direction and I'm busy doing additional (re-)training as an allergy and nutritional therapist. All in good time...

I need to ask your advice on how to approach the situation with a consultant.

For 7 years I've been seen some distance from home at RAH Paisley in the contact lens clinic/ophthalmologist (crazy, yes, having to go past the nearer and better Gartnavel eye unit). I asked my GP if I could be seen at Gartnavel instead and she said no, because I was already an RAH patient and that anyway, patients have to sit for up to 4 hours in the waiting room at Gartnavel, so I'm better off at RAH.

I've now missed 3 eye appointments at RAH because of a dire atopic eczema flare: hands (can't use lenses because skin has been so bad/using ointments), all around neck, arms, legs, elbows, eyes. After months of suffering, losing sleep and trying all sorts of supplements and changes of fabrics, clothing, bedlinen, creams, potions (!) and battling under the effects of "drowsy" antihistamines plus sedative opiate painkillers for endometriosis, I realised I had to get help.

GP ought to have referred me to dermatology months ago: didn't until 2 weeks ago.
I really need to be seen by a new specialist (NOT the only consultant at the local hosp who was hopeless last time). So, I thought, try to get a specialist at RAH, where I'm seen for KC anyway.
So, I emailed my ophthalmologist (of 7-8 years: knows my situation), attaching photos of my skin. He saw how things were and spoke to a derm at RAH the next day. They say I need immunosuppressant drugs and frequent monitoring (weekly blood tests, as these are basically cancer drugs) and therefore refuse to see me at RAH because I have to be near to a hosp.
Therefore, apparently my only option is the same consultant at the "local" hospital who was not helpful or interested.

Tell me: can my RAH ophthalmologist not make a referral himself to derm? Why is he insisting I go through the GP?
Do you think it's worth a try asking my RAH opth to transfer me to Gartnavel and also pay privately for a single derm referral to someone who does RAH derm work at Gartnavel and could then possibly see me on the NHS? (So eyes and skin are seen in the same place? Might be better communication than having separate notes in different hospitals).

I've lost faith in my current eye spec. I really thought he'd fight my corner and he hasn't. None of them are, really, despite taking one look at me and saying "you need cancer drugs". No doubt cost is a factor.

I was suicidal over this a month ago: God knows what I'm going to be like if this carries on much longer.

hello, sorry I can't advise you specifically but I can sympathise as I developed Eczema at the age of 38 and later discovered it could be linked to KC. mine's not too bad so i can cope.
you last line worried me, nothings that bad although it can seem insurmountable, I hope you have friends and family that love and support you?
be strong and keep fighting, I would go abck to my GP, thats what I believe you have to do to get referrals- but you are allowed to ask for a specific doc or hospital. thats what i did for KC treatment, I did my research and then asked to be referred by my GP to a specific surgeon.
good luck

Take care.

As you know, I have always thought it slightly eccentric of you to travel by train past Gartnavel on your way to change of trains and bus or taxi to RAH. In your place I'd ask my RAH ophthalmologist for a referral to the clinic at Gartnavel and ask my GP to give me a referral to a dermatology clinic at the same hospital.

Don't be intimidated by the waiting list for a first appointment. Doctors have a way of short-circuiting the list. I think it has to do with the form of words they use in their initial referral letter. In very extreme circumstances they can make the initial referral by telephone.

All the best. Always know that you are not alone.

Andrew

I am in Helensburgh also but I go to Gartnavel. The health system hereabouts never ceases to amaze me!
Good luck with everything.

Thank you for your help.

I contacted my ophthalmologist and he has referred me to Gartnavel to Dr Ramaesh, as Andrew suggested. It will cut my journey time in half and hopefully I can also be seen in the same hospital in their dermatology department, too.
I'm awaiting a letter with a first appointment.

Well done

I thin one of the issues is, the government does not have a list of hospitals that have corneal clinics. With this in mind how is a GP supposed to know where sucha hospital is?

They may be completly unaware there is such a place closer. I accept they should know what facilities their local hospitals have but that seems to depend if the GP surgery has GP's that specialise in certain areas.

The other thing (certainly in England and Wales) is that if you get a prescription from the hospital clinic there is no way it will be dispensed elsewhere. Something to do with contracts.

This is another area we as a group need to be pushing to get increased care in the community.

KC is far more common than we think due to improved technology that can pick these things up sooner. We probably don't here of them because not all high street optoms do topography and those that show up have managed with glasses and no need to change things.

Good example is my wife, got her to have a topography done last weekend and it seem she may well have sub-clinical KC in one eye. Would explain why one eye is stayed pretty much unchanged for 30 years but the one with the (possible KC) changes without warning every couple years. Not by much, just a coupe lines on the eye chart.

I know gone off at a slight tangent, but I think the system is as mainly at fault and in some cases the people we trust our vision to.

"the government does not have a list of hospitals that have corneal clinics"

Is that NHS Clinics which the Gov themselfs fund ?

Yup, I am talking about NHS clinics, the ones we rely on.

That is sure as hell depesssing if true !