Hello!
I’m just reading the WHSSC NHS Wales Policy on making decisions on IPFR - or Individual Patient Funding Request.
As most of you know, myself and others in Pembrokeshire under Hywel Dda UHB have had IPFR applications turned down, using the fact that lupus patients can be looked after adequately by a General Rheumatologist under the health board current provision.
My argument is that this policy is unfair, it’s a post code pottery, as if we lived in England we would firstly have the right to a second opinion and secondly be able to chose to get that opinion from a lupus expert or a LUPUS UK Centre of Excellence.
We don’t have either of those rights in Wales and there are no Centres of Excellence here either. So we are automatically at a disadvantage for lupus treatment because we live in Wales.
Our health board will only let you out of Wales currently, to a Centre of Excellence if you have kidney involvement and/or they are considering Rituximab (as indicated to do so under the NICE Approved BSR Guidelines for Lupus.
I have found in the Policy a clause that says a Health Board needs to give careful consideration to certain circumstances which include 2.2,
“When other Health Boards may have used their discretion to make a different decision on a specific topic.”
2.3 says that Health Boards can lawfully exercise it’s discretion and to allow for exceptions to it in specific clinical circumstances.”
So, my question is, has anyone in Wales been “allowed out” of Wales for lupus care and/or treatment. What health board are you under?
If you would rather not say here in public, please send me a personal message.
Thank you!
Wendy x
9 months from SLE diagnosis and STILL no rheumatology - How do you access healthcare and rheumatology?
