"Seeking Vasculitis treatment in an adjacent health board area"

I suffer from a rare condition called Vasculitis.

Being a rare condition, not many people have the condition but more importantly, not many consultants have experience in treating it.

The condition is where your immune system attacks your blood vessels, and that could be anywhere in your body, impacting any organs.

In the more common cases, the organs impacted fall under Renal or Rheumatology, and these are the only two specialisms in Scotland that are able to successfully treat this condition.

Many people that have kidney involvement, also have nerve damage. In my case, the major feature is nerve damage, which means that my GP has to send me to a Neurologist, who has no experience in successfully treating this extremely rare condition.

There are Vasculitis clinics all around Scotland and it turns out that the only successful treatment that I previously received was in a Renal Vasculitis clinic. Neurologists have been unable to get my condition under control, failing in 3 out of their 3 attempts.

I was in remission over lockdown but relapsed in February 2023. The treatments from Neurology damp the condition for a short period, then it flares up again. I have found a Vasculitis specialist in Kirkcaldy who is willing to see me, but as I am in the NHS Forth Valley area, I need to get Out of Area Referral approval from the NHS Forth Valley Public Health department before I can be seen in Kirkcaldy, and my referral request has been waiting since March, with still no sign of movement through the Public Health department.

Is there some way in this one off special case, that NHS Fife Rheumatology could make an exception, and treat my worsening condition, before I accumulate more permanent nerve damage, with a view to recover the costs from NHS Forth Valley later, when (if) they eventually grant the permission to have my rare condition treated by a specialist that is competent to treat my condition in Fife?

There is a twist in the tail here because the Vasculitis specialist that is prepared to see me in Fife, retires this year, so it may not be long now before this only glimmer of hope that I have, is also extinguished.

Can someone please help?