im so sorry, i know what its like when you feel like youve been given that hope and then its taken from u. if u want to talk im here x

Hi
Such a stupis and annoying system.
Get straight back intouch with your GP, explain what has happened and insist on another referral. Where abouts do you live? Machester and London have lupus clinics
x

I agree with didds82, don't waste time and get your GP to do his/her job. Even if you are also looking at private route, I would get the GP to refer you elsewhere for good measure.

Got a app with doc tomorrow son,t worry will be having words also lookin at private rhuemy bit
don't know where to start and money is very tight could prob stretch to 1 app so hardly worth it won't get answers but ty for replies and just being there it really means a lot x

You really shouldn't need to pay privately for an appointment. You know you have the right to ask for a referral to any hospital in England so if your local ones are no good for lupus, look further afield.

I agree. It doesn't sound like things have got better since I was diagnosed over 20 years ago. I was told that I needed an emergency eye appointment for a baseline assessment before I could have any drug treatment. I was getting worse by the day and had already been suffering after numerous wrong diagnoses for about 4 years. I was told it was a 6 week wait and I knew I probably wouldn't be able to get there then - as I was reaching a point where I could barely walk. I burst into tears - something I just don't do (well never in public, anyway. Crying just makes me feel worse.) Even my mother was taken aback.

In desperation I asked about private treatment, even though I don't believe someone seriously ill should have to take this route. When the receptionist asked the doctor about this it turned out that I would be seeing the same specialist as I would at the local NHS hospital but I'd have to go to a private hospital miles away as the tests needed certain equipment. Also, even on a private list, which would leave me with a big bill, I would have to wait 3 weeks. Somehow they then found me an NHS appointment with a shorter wait, although it was still about 3 weeks.

As mentioned, you can now ask for a referral to any hospital. I would certainly try this avenue first. My husband pays into Bupa through his work and I am supposed to be eligible but I've never been able to use it. Even if I did, I would still have to pay an initial fee on top (£100 +) at the start of a course and various things aren't covered. There is also a ceiling on what you can claim each year. If claims go up so do the premiums.

I don't know how others have coped with the problems of getting appointments but I'm reluctant to encourage anyone to go private.

If there are so many people with Lupus needing appointments, shouldn't some NHS money be diverted into providing more clinics?

hi girls thank you.my doc put me in system as urgent.had app 2day with doc and guess what he sorted it got app 3rd april ty hope your all well x