My partner got diagnosed with Lupus a year ago. It was difficult to get a diagnosis and to get in front of the right people. Eventually we got a letter confirming her Lupus diagnosis from dermatology who had done blood tests and a skin biopsy when she was having a bad flare up.
Since then she has been to the doctors several times with problems relating to her lupus. Yet we recently found that the GP's didn't have her lupus on record (we had to evidence the letter).
We have a serious issue with her eyes at the moment that started with dry eyes, blurry vision and photosensitivity. This has escalated to where her eyelids have caused serious cornea lascerations on both eyes making impossible to see and a great deal of pain /worsening light sensitivity.
We are attending the eye clinic almost daily (which is now helping) but are concerned that we can't see Rhematology as previously had never been recognised with Lupus or referred from our GP.
After some more chasing, we managed to get the GPs to make the referral needed. The catch is they say it could take months... They said we could be seen in 4 weeks as they will mark urgent, but this is simply no good for someone who has effectively lost her vision and is in pain.
Can anyone recommend what we can do to get the referral we need as soon as possible and not in months? Feels like support has been non-existent.
Thanks in advance for your advice.
Andrew
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andy_ashton
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Sorry to hear are are struggling to get an appointment, it took me 8 years going to different hospitals, so i went private & got diagnosis & got a quick appointment in the N H S. I have now moved & waiting on list (18 weeks) to see a consultant.
1. Contact PALS the patient advice service. I'd suggest phoning them but I think you can also email. They may be able to advocate for you and speed things along. Ultimately though there is a waiting list of urgent people and your partner may not be viewed as more urgent than other urgent people on the list.
2. Phone the booking department yourself regularly. You may be able to get a last minute appointment if there is a cancellation. My partner successfully did this once and got a same day appointment.
3. Write a letter directly to the rheumatology department. You may be able to explain the urgency better in a letter than by phoning, but you could try phoning too. PALS may be able to help you get addresses and telephone numbers.
4. Go private. Maybe explore this, while you are waiting to see if any of 1-3 actually work out.
5. If the GP should have referred you sooner, you could also write a formal complaint to them. I'd mention about the referral being delayed to PALS too, as maybe your partner should really be higher in the waiting list.
Unfortunately your best chance to get swift treatment /diagnosis is to opt to have a Private appointment.As you say, your priority is to get some fast help, & these days on the nhs that is not always forthcoming.You can sort the ins & outs with your GP & other departments once your partner has got some help.
When I had my bad flare up and couldn’t get gp nor the rheumatology specialist to help me it got so bad I got admitted to the hospital. I did although keep chasing the rheumatology receptionists. And they also said 4 weeks but on the phone I said I’m in so much pain I can’t wait that long and that I was willing to travel to different hospital to see the specialist. That made it shorter to one week. Also you could call 999 and talk to their doctors they nay refer you to a hospital to a short stay unit or something and have a look at you that’s also what happened to me as I got so bad that I couldn’t wait the one week to see my rheumatologist and had to be admitted to the hospital. They also have advice lines which you could try to call or leave a message.
Hi sorry to hear you’re really struggling at the moment , I know this may not be an option but this is just a thought ! You can pay private to see a Rheumatologist at the Nuffield , then ask him at the consultantation if you could continue your treatment on the NHS for financial reasons ! I would also get back in touch with GP and ask for you’re referral to be changed to urgent not routine ! hopefully you will get seen soon take care x
I would suggest you get a referral from your GP for Guys Abd St Thomas’s- you are entitled to this so push for it. So many rheumatologists don’t know enough about Lupus. Good luck
I know a lot on this site will say ‘what’ I found my eye problems from an excellent person in Specsavers she found my Glycoma from long term steroids
Then she found fast growing cataracts, referred me and now they are gone.
Don’t give up hope, it maybe she has Sjogrens Syndrome, again there are many things to help
I am an old bird now but do believe in taking yourself away from focusing on illness.
All the obvious, reading, talking books, keeping a diary, drawing, painting, exercise, be it walking. Maybe get a pet, I know but it gives you something else to focus on
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