In Cardiff the waiting list is 10 to 11 months. I phoned them up a few weeks ago to find out where I am on the list and was politely advised "oh don't worry you are only Week 34, the waiting time is 44 to 48 weeks".
Is this just Cardiff or do other areas experience this length of time on a waiting list?
Hello, I don't think I had to wait many weeks to see my Rheumatologist, but that was a few years ago in Leeds, But my follow up apps are getting further apart. They always say, see you again in 6 months, so I was due again in September, but I have just got my appointment for December! So I guess waiting times are getting longer here too.
Thanks for your reply Yorky 
My Pain Clinic - the hospital has cancelled on me 3 times already this year 
so know the feeling.
You have the choice to see someone out of Cardiff if you prefer.
I went to the RSA Seminar (Raynaud's and Scleroderma Association) last month. Dr Tom Lawson a Rheumatologist for Spire Hospital (Bupa) he said back in March the Department of Health had changed the rulings on people going outside of their constituency/area. So we can no longer do that
Hello again CardiffLady (have just replied to your e-mail about waiting times on another question) - this is a strange one to me too. I had been attending my local hospital for Raynauds and Sclero for about 11 years but for the last 3 of them there was no specialist there. My faith in the consultant 'with an interest in scleroderma' decreased with every appointment so in the end I found a consultant in another county (which is definitely out of 'my area' I'd say) - my GP s happy to refer me and I haven't looked back. OK I now travel about 60 miles each way to my appointments but it is worth every mile and every hour of tiredness afterwards. The staff are wonderful - I cannot fault the service in any way.
I was originally referred by the surgeon who did my carpal tunnel operation. I explained I had lots of pain and he saw that my hands were swollen and shiny and he told me that could be symptoms of something but didn't say what. This was in March 2011. I had an appointment 5 weeks later. Then for the first 6 months or so I saw him every month. Then 3 monthly and now 6 monthly. The rheumatologist also told me if I get any problems call his secretary and he will see me fairly quick. I haven't needed to do this.
He referred me to Prof. Denton in the Royal Free Hospital and I got a sheet of exercises for my face. My mouth had shrunk so that I couldn't eat properly. I felt like a beaver when I ate a banana for example. Eating it sideways. Now my mouth seems to be back to its normal size but I have to keep the stretching exercises up.
I go to the Ipswich Hospital and have only had good treatment there.
By the way, I have been told here that the longest time that you should wait for an appointment is 18 weeks. I have always been seen well under that, even when the doctors only thought my problem was carpal tunnel. It was just one of the many symptoms of Scleroderma that I had.
I hope you manage to get an appointment soon.
Wow you saw the top man "Denton". Glad to hear things are looking up for you. Ta for reply.
I wonder how I could get this sheet of exercises for the face. My mouth restricts what I eat and the dentist is having a very bad time fitting me with dentures.
You could ring the Rheumatology/Scleroderma nurses on: 020 7830 2326
This is the number for Prof. Denton's specialist nurse who gave me the leaflet.
It is called: Maintaining Facial Mobility through exercise.
It helps me so hopefully you will get some help from it.
Have you looked at this nhsdirect.wales.nhs.uk/ency... it gives links to other website Wales too.
I was told a few years ago that it is quicker to get an appointment if referred by GP as they have to act quicker than if it is an internal referral. Might be worth asking GP if he can speed it up for you
Thanks for that, GP referred me back in January. So will ask him again
You should make a complaint via PALS pals.nhs.uk/
Oooo never heard of this, cheers inkedup
Tried but it is only England - Scotland and Wales are not covered. Thanks anyway.
took me 7 months to finally get appointment to see a new rheumatologist, he said would see me in 3/4 months which he states on letter to GP afer 4 months phone his secretary her reply was Oh that means it will be a year!!!! Got appointment for december but only after I had to tell her why I needed to see him!!!!
Ahhh thanks Sharonap. So it appears to be a trend throughout the UK and not just Cardiff. ta.
Check to see if your Rheumatology department has a nurse run hot line. I use this in Leeds in between appointments, they can help with things. And if it seems I am having difficulty then they get me seen sooner. I usually have 3 - 6 months between appointments depending on any issues I am having. And I get my appointments in that time frame. I go to Chapel Allerton in Leeds and have not had any issues with them. But that does seem like a awfully long time for an appointment.
Hi uknlv, it's now 42 weeks to date and still no letter for an appointment. I'm in so much agony 24/7 and wish something could be done. Will try the hospital on Monday. Ta.
I would suggest talking to your GP, they should be able to get you a sooner appointment if you are in a lot of pain. Also you might want to contact your PALS officer within your Trust. I only ever had one issue in all my years of going now and I contacted them and they resolved my issue very quickly. There should be no need for you to suffer so much. I have a great deal of pain on and off, and I use Visualization to help me. It works very well for me. If you need any suggestions on how to do this let me know, I used to train people on this in the past.
Does anyone know if scleroderma can cause one to see bright flashing swirls if one blinks in darkness?
New to all of this,,
Raynauds....The begginiing stage of oh so much more to come!
I’m going to see Professor Denton! 😊
Who is on this Govt list then?
