"Upset after appointment."

I was referred to Leighton in Nov 2017 for a Dermatology appointment after having a diognosis of Systemic Sclerosis (rare condition and scary) and the need to find out if it was limited or not and also to rule out other skin conditions like Psorisos.

I got an appointment for 13th Feb 2018.

In the mean time i had a very bad flare up and went back to my GP who after seeing my flare up felt i needed to be seen sooner.

So the ref was expedited to urgent!

I rang

Leighton a few times, one call being the 15th Dec 2017 to say i was having a flare up and it was quite a bad one, and to check the expedited ref had been received, and to ask if i could get an appointment,

I was told the expedited ref was returned to my GP as it was for the UHNM, I rang my GP who confirmed it had been returned and they re-faxed it back to leighton!!

I rang again and asked if the fax had arrived with them to be told it hadnt,

I rang my GP again who confirmed it had sent. I rang Leighton again to be told they had recieved it and once it had been looked at i would get a call, this never happened never got a call. I rang a few times after the 15th dec 2017 but no ans.

By Jan 2nd/3rd 2018 I had no heard back nor had an appointment letter, so i rang Leighton again, to be told my appointment was 13th Feb 2018! I asked about the expedited ref to be told it could not be found! and i would get a call back.

I got a call back telling me they had found the ref and i had an appointment 13th Jan at 9.45am.

We were received by a lovely nurse she was great, she arrived us and took me into a consultation room, where i was asked to undress and gown up. The Dr came in talked to me as i sat on a bed in a gown!

Never touched me and never looked at my skin properly, she did glance at some pics i had taken of flare ups. And said the staining and rashes were not consistent of SS which i beg to differ, and sent me for blood tests and gave me a prescripton.

I understood all that was said to me, i just felt the manner was cold and at one point i felt the Dr was irritated by me.

I asked about a punch biopsy she said to ring and go back when i was having a flare up!!! and a punch biopsy may be done? I asked how this would work, as its an hours drive for me and how could i be seen on the day of flare up ?? bearing in mind i had been ringing since 15th Dec 2017 and i had explained then that i was having a flare up and to be told there were no clinics and all the conffusion over the ref to start with!!

I left feeling frustrated and upset!!

We arrived at 9.20am and left the hospital at 2.40pm because 1 blood test had not been ordered properly.

Not happy, sad that i have to write this, and feeling my long day there was a waste of time.