help/advice from anyone in the know at st thomas' please.

[emmaj]

Hi al, I need some help and pointing in the right direction, this may be a long one so feel free to switch off if you get bored........ Im at a bit of a loss as to where to go from here, I have APS, and have had a stroke which has damaged the optic nerve and lost my right peripheral vision in both eyes. I am now under a neurologist and opthalmic consultant who are both really good, however my eyes appear healthy in all tests apart from I have now lost some peripheral vision in my left side also and have cupped discs, and I have a black cloud that appears in my left eye, and deteriorated vision in the left eye. I have had cateracts removed so it cant be that. I have a cateract in the right eye forming but my left eye in the past few days has been confirmed that my prescription has changed a whole stage in just a few weeks, again being told my eyes look healthy so it must be the visual cortex of the brain that is being affected even though i am on warfarin. My opthalmic person says he doesnt really know what the prognosis is and i am waiting to see him on 27th again with this new loss of vision, and my neurologist cant really do any more than put me on warfarin. I have foned the lupus excellence ctr in birmingham but they dont seem to think its something they can help with as their eye depts are only for patients whose medication is affecting their sight,,not conditions, So im in a bit of a grey area really between consultants and the only option I can think of is a referral to St Tomas' in London. My GP says there may be a problem with funding out of area so I may have to go private but i really want to see the right person - has anybody seen/heard of a consultant at St Thomas' who deals with the more neurological forms of APS or who is in the know about eye problems? Im really scared that im losing my sight and im not under anybody specifically for APS just different consultants for different problesm locally. To top it off I phoned St Thomas' today to ask for the costs of a visit and was told that the secretary I spoke to had worked there for three years and had never heard of Proff Hughes !!!!! Help please xxx

[Hidden]

Hi EmmaJ - ask to be referred to Prof Beverley Hunt at the Haematology Department at St Thomas'. She is probably one of the best APS experts in the country.

FYI - you can't make a private appointment at an NHS hospital - well, definitely not St Thomas' or Guys. Graham Hughes retired from the NHS in 2005 so I'm not surprised the secretary hadn't heard of him!

If you want to make a private appointment there is the London Lupus Centre - I'm sure other people on here will be able to tell you more about that.

Good luck!

Kate

[MaryF Administrator]

Yes EmmaJ, push your GP to do this if possible. I managed to push mine.

You can print out and show him this:

guysandstthomas.nhs.uk/our-...

Best of luck, let us know how you are getting on. Mary F x

[emmaj]

Thank you - I thought prof hughes still worked there on a private basis! Ill definately prit this page off and see if i can push for a referral - Im not too sure what more they can say other than what my opthalmologist/neurologist/heamotologist say here but at the moment all i know is my sight is deteriorating fast and nobody can give me any answes as to whats happening - i so wish like diabetes we had specialists and proper clinics to attend run by nurses and doctors who specialised in it and knew the side affects of it by symptoms - maybe one day? Many thanks for your help x

[kathyD64]

Hi Emmaj - sorry to hear what you are going through at present so scary for you - prof hughes still does private work at london bridge as does prof Khamashta i think they both were working on the thursday when i saw prof K.

cost was £220 for consultation but much more for tests. (bloods start at £350) Im in a similar boat - prof K would like to see me at St Thomas's where he works for the NHS so test etc wont come directly out of our pockets but it needs gp - pct approval. im waiting to see my GP nxt week to ask to be referred plus will have prof K letter to take to hopefully help with the referral.

As Kate says if you can get referred directly to St Thomas's and see Prof Bev Hunt that would be brill...

just to say i know when i rang london bridge the waiting time for prof Hughes was october prof K much shorter time i got to see him within 2 weeks and i found him excellent but i dont have the specific problems you are describing.

Hope you can get seen soon kathy xx

[emmaj]

Many thanks for your reply too Kathy, Im due to see my eye consultant on 27th so going to really push to try and get him to tell me what he thinks is going wrong - clearly the warfarin isnt enough, and i also see my heamotologist on 25th and he works closely with the birmingham lupus excellence ctr, so i could try and either get somewhere with them, and if not ask them if going to london bridge would help, just thinking that im already under them for speediness. If not then im going to ring and get seen privately by dr khashmata, then like you maybe they could give me a letter that would help with the gp referral - at least then ive covered every angle and the PCT would see from the letter that it would be beneficial for me to go to London - thats a great idea. I looked at the link from Mary and Proff K seems to specialise in 'related conditions' so that gives me hope - thank you everyone for your time and il keep you all posted - good luck with your GP next week xx

[SueLovett]

Hi Emma,

I see Prof. Khamashta and originally had to go privately to London Bridge.

I took copies of all my test results including MRI scan which saved a bit of money.

I would have no hesitation in recommending Munther Khamashta he is looking after me as well as possible and has even personally rang my GP in the past.

If you can possibly afford it don't delay it was the best money I have ever spent.

xx

[KJay]

Hi Emma

You probably already know this but I have sent the link to the NHS site about your right as a patients to make choices about your treatment.

My GPS have referred me to St Thomas and now UCHL and I live in Gloucestershire so it is possible and I don't see why you should have to pay loads of money going privately when you should get it on the NHS but I know it's not always that easy!

nhs.uk/choiceintheNHS/Right...

Best of luck with your referral x