No Paediatric rheumatologists in our health board 😫

[bebski]

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!

If I were you I’d be travelling as far as it takes to see one ( a paeds rheumatologist) on your private healthcare. We used to do 4 hour journeys each way to see DD’s spinal consultant! Yes, it’s inconvenient but your child’s health is the priority

In practice once you see a general paediatrician the lines of communication to rheumatologists for advice (for interpreting symptoms / further tests) are generally quite short and if they come to suspect a specific rheumatological disorder they can generate an urgent appointment quite quickly after that. The service would argue the fast urgent appointments are only possible because the intermediate layer of gatekeeping is happening but it is frustrating for patients / families to feel like they're being kept at arm's length.

I am surprised waiting lists for general paediatrician in ABHB are as long as that. One option if you are considering private anyway would to get a general paediatrician appointment privately I suppose, logically they would be able to do their own referral to paediatric rheumatology if that's what proves to be needed.

what about this Dr. @bebski?

I would imagine you'd already exhausted all possibilities so he may have been discounted.

https://www.spirehealthcare.com/consultant-profiles/dr-jeremy-camilleri-c3065330/

Isn't Bristol within an hour?

www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bristol-royal-hospital-for-children/what-we-do/paediatric-rheumatology/

To be crystal clear, there are terms on our private healthcare plan which mean that we are only covered under a set radius from our home address which works out to roughly 3 hours.

This summer we paid to see a private assessment centre specialising in autism in girls, based in London (as autism isn’t covered on our plan) and we felt this specific centre would work best for our daughter.

It took almost 8 hours of travelling and was worth every minute to get our daughter the diagnosis she needs. I would travel whatever distance was necessary for either of my children.

Your comment was not only unhelpful but also upsetting and unnecessary.

I’m glad your daughter was able to be helped and I hope she has made a full recovery.

Thank you so much for your message.

You’re totally right, I hadn’t thought about the structures in place for these wait lists particularly the more specific departments.

I’ll try and find out more re general paed appointment wait time and if that’s as long as the GP suspected, try and get a general paed privately to check her over.

Thank you, unfortunately spire no longer accept paediatric referrals 😫

Yep I had a look at this and am wondering if I could request a referral to here or Hereford rheumatology departments?

or do you have to stick to whatever is under your health board where you live?