Thanks for letting us have an update.
I'm sorry to hear that you didn't have a very good appointment at The Royal Free.
I always insist on seeing Prof. Denton or Dr. Ong, whom I've seen several times now and I usually find them very helpful (Dr Ong particularly, when I needed to chase up the hospital dealing with my hip replacement.) Having said that, by the time I was referred to the RF for scleroderma, I had already been treated for my lung involvement at The Royal Brompton, so was in the fortunate position of there not being a lot more that they could do at that time for me.
" .........for some unknown reason my NHS details could not be found."
Yes well, why am I not surprised at that? Sadly, the NHS admin does leave a lot to be desired! On my first appointment at the RF, they also had no details of the treatment I'd received at The Brompton, but fortunately I had taken the precaution of bringing all the relevant copies of my notes with me, so was able to produce them. I always take copies of my latest lung function tests, mainly to save time going over the same ground again and unfortunately all the hospitals I deal with are notorious for not liaising amongst themselves (the right hand seldom knows what the left is doing. )
On your next appointment in three months, I would suggest to them the possibility of having UVA1 phototherapy treatment. It is very important to be politely, but firmly, proactive with regards to your treatment.