Asking for advice for Immunology referral...

[andy_ashton]

We have an ongoing serious issue, whereby my wife cornea's are getting lacerations causing vision loss and light sensitivity from what we presume is her eyelids and extremely dry eyes caused by cutaneous lupus.

She is having allergy problems, eyelid swelling, etc. all of which is most likely linked to her lupus.

It's been going on for over a month and although the eye clinic have been great they can't treat the cause and we need help from immunology. This is seemingly hard to get.

Our GP wrote a urgent referral, and we have just received confirmation that we should hear back with an appointment by the 25th of December (saying we can call if we don't hear anything by then). This is obviously too long whilst permanent damage may be caused to her vision and continues to have very restricted sight at present which is very limiting with a young family.

Does anybody have experience of waits for referrals and what we can do?

It's a point where private healthcare may be the only option, but even here we don't know where to start and from searches locally - availability for an immunologist seems a long way off (mid-December).

Any suggestions welcomed! Thanks in advance.

[andy_ashton]

Earlier this month we were trying to get a Rhematology appointment but we are now of assumption this is less important as the eye problems may be allergy driven! Just desperate to get to the bottom of things so her eyes can get better and we no longer keep getting new eye lacerations!!

[WinterSwimmer]

More and more stories of this sort of lack of care in the NHS are emerging, and yours is so awful I cried. I cannot imagine how it feels to know that your eyesight could be being permanently damaged and to feel so powerless to do anything about it in a country that once prided itself on providing excellent healthcare free at the point of use.

Have you tried talking to your MP? I also suggest writing a letter of complaint to all parties involved - you may be able to get help from an independent advocacy service (depending where you live).

[Tiggywoos]

hi Andy really sorry for what you and your wife are going through . I bet you’ll get some great responses but I just had a thought ..

I don’t know where you are in the UK but Bath has a really good consultant called Deidre Buckley she’s at the Circle Health Group (I think she’s what you need 🤞)

If she isn’t what you need i bet if you rang Circle health they would be able to point you in right direction.

I have health insurance and there is a page where I can put specialities in and it gives me consultants that are relevant and tells me where they are . I would be more than happy to do that for you if it helps

Take care

[andy_ashton]

Thanks we are based in West Yorkshire, but this information is still helpful.

[Betty909090]

Hi there,

Sorry to hear about the long wait for a referral but you write,

“ my wife cornea's are getting lacerations causing vision loss and light sensitivity from what we presume is her eyelids and extremely dry eyes caused by cutaneous lupus...”

These painful symptoms need addressing forthwith! ? Cutaneous lupus seems to be morphing into a Sjögren’s (dry eye) type serious flare up!👆

Lacerations (cuts, tears) on the corneal surface are probably due to severe lack of natural lubrication for the eyes eg lack of tears because the tear ducts are blocked/damaged/under immunological attack?

There is too much frictional damage to the eyes!👁️👁️

Get the GP to prescribe healing, antiseptic moisturising and lubricating gel/comfort drops for the eyes. Aka artificial tears, Liquifilm tears.

This needs to be done ASAP !

The GP should understand this immediate need.

I would very surprised if he/she refuses!👆

This has to be done before a definitive diagnosis is reached. Your wife is suffering too much.

All the best.

[andy_ashton in reply to Betty909090]

Thanks so much for the advice. It's been ongoing and she is on A LOT of eye drops - some of which the eye clinic they have changed as we suspect allergies are involved and they have run tests. For the most part, they have been great but even the Hylo Forte every 10 mins and Hydramed Sensitive (+others to prevent infection) aren't really protecting her eyes from abrasions or at least all of the time. Everything improves and then we seem to have setbacks. We're at appointments 2 to 3 times a week at the eye clinic (sometimes more for 6+weeks) - they're really doing as much as possible it seems to protect her eyes and help - we have a designated cornea specialist who is great but she is an eye doctor and can't effectively help with the inflammation and underlying issue that maybe going on.

We have an immunology referral from her/through our GP, which has been acknowledged but as I mentioned, the speed of getting an appointment is the main concern now. We looked private but the first available appointment seems to be no sooner. Circle Health Group had March 2023 as the next available and I basically said we'd go anywhere!