My daughter’s GP (we are in Monmouthshire, south wales) put in an urgent referral for her to be seen by a paediatric rheumatologist only to hear that there isn’t one under our health board!
They have said she must first be seen by a general paediatrician and then if they believe she might have lupus they’ll refer her to Cardiff hospital but it could be a year before she gets seen be a general paed 😫 and even then I don’t have faith that they’ll see all her symptoms and feel she needs to be referred on, the GP referred her straight to a specialist for a reason!!
There are no private paediatric rheumatologists under our private healthcare within a 3 hour radius so that’s not an option either.
I’ve heard good things on the various groups about Hereford rheumatology dept, are you allowed to request a referral be sent there instead????
or
do you just have to stick to the health board based on where you live????
symptoms - summer period had red rash on face (not over nose) that would come out with sun and if poorly but disappear within an hour, intermittent non blanching Petachie rash on body that would coincide with red face rash flare, long periods of intermittent low grade fever, intermittent joint pain and pins and needles, very pale, low iron (but does have restricted diet), intermittent itchy skin, during an infection she often gets a prickly heat looking rash all over her body, frequent Petachie spots inside mouth, now it’s cooler she has almost daily mottled skin which is really bad on legs particularly when she is poorly even if house is warm, intermittent blue lips and blue nails, bloods taken at hospital three times this year were all clear, urine test in Aug was clear, oxygen levels fine after last episode of blue lips.
arthritis and raynauds and possible undiagnosed lupus run in the family
Thanks for taking the time to read this if you reached the end!