IPFR in Wales - who’s had one approved for lupus services or treatments?

[Wendy39]

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

[Wendy39]

You have made me giggle! Great analogy! We are totally trapped! Xx

[CecilyParsley]

My God Wendy what a complex and bureaucratic process. If you had not have told me I would not have known that it was not my right to seek a second opinion. The biggest issue I have encountered is that a second opinion is often provided by a colleague of the consultant you are expressing misgivings on. I don’t know when this rule came into being but I was referred to St Thomas’s in 2013. Thank you so much for your fight and tenacity in getting better treatment for so many. I have now been downgraded to UCTD again but if there is anything that I can do to help you I will be glad to xx

[misty14]

A glimmer of hope maybe Wendy? Do hope you get some interesting responses. Its more than time you patients in Wales were treated much better!. Xx

[Wendy39 in reply to misty14]

Thank you Misty! For all of your support, encouragement and friendship. Fingers crossed 🤞 xx

[misty14]

Look forward to your update wendy. Fingers tightly crossed for you all. Xx