Thread by @AppgCoronavirus

🗣Colin and Rosie Pidgeon
“It was the start of September when this first started with Rosie and then it was the start of October when she was referred by our GP to paediatrics. She’d had a series of blood tests like Ravi,” 1/
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“To rule out things like low iron, or diabetes and things that can cause dizziness. So she was referred for an urgent paediatrics appointment, 12th October something like that. When I rang the hospital appointments line, it actually was the 1st Nov…” 2/

“When the Long Covid clinics in Northern Ireland were first announced. I spoke to our local hospital, the outpatients thing and they told me that they were currently seeing the urgent paediatric referrals from June. So it was likely to be February or March before she was seen.”3/

“You can’t leave a child with a gripping headache for 6 months before they can even see a specialist. So we paid to go to a paediatrician privately and he’s arranged a whole load of tests which have cost me a lot of money. And so far they’ve ruled out lots of nasty things” 4/

“Which obviously we want ruled out, but what they haven’t done is pinpoint anything all that helpful. After Rosie’s TV interview - I tweeted a short version of it - she got a phenomenal response, praising her for her courage.” 5/

“I also got several messages from various people who have medical experience. Including a guy who I used to rock climb with when I was a teenager and haven’t seen since my brothers wedding in like 2001 or something. He said we’re seeing a lot of POTS at the moment.. 6/

“It sounds like it could be that with the dizziness, get it checked. So we went for an assessment with the GP, there’s a fairly simple diagnostic test, stand up, measure heart rate after a period of time to see if it goes back down. That sort of stuff” 7/

“And it was sort of inconclusive, her heart rate when she stood up from the couch, went up to 129. Which I suspect it shouldn’t do, but it did come down again and more quickly than you might expect if she had POTS,” 8/

“but she’s obviously got something going on with her nervous system. If I can just rewind from all that for a minute, the other thing on the 1st November I asked our hospital about was the Long Covid clinics and when that might be coming round.“ 9/

“I was told the first they had heard of them was when they were announced on the news unfortunately. They didn’t have any clinicians in place, so I left it a while, rang back again and passed around various places and this was one of the things that was really difficult..” 10/

“I had to make several phone calls in order to even get to the right place. If I were in Ravi or Rebecca’s position of crippling brain fog I don’t think I’d be able to battle my way through the system. I’m healthy, I’m well & it’s a struggle for me to do it on Rosie’s behalf” 11/

“I then discovered that she couldn’t be treated by the Long Covid clinic because it was for over 18s only. I eventually got speaking to a clinician in one of the community hospitals in Belfast and she said she’s been charged with running the clinic for under 18s” 12/

“But it hadn’t been confirmed or commissioned by the health and social care board, which commissions services from the NI Trust. It’s a complicated system. So she was waiting on confirmation and said she would ring me again straight back after she returned to work in January” 13/

“Which she did, there was no update apart from ‘we still haven’t heard’. The cynic in me says the BBC rang the health and social care board and said ‘do you not run these for under 18s’? And somebody then made a decision.” 14/

“About 30min before we sat down with the journalists, we got a text saying we’ve just heard from them. They’ve confirmed they will treat 16-18 year olds. So that gets Rosie into the system, she has her first appt and assessment on the 24th January, so we’ll see how it works” 15/

“I’ve read plenty about these clinics and they can be a very mixed bag. If anything, all we’re looking for at the moment with her, because we’re getting a lot of medical investigations done privately -

“we need stuff just to make her life bearable, cause it really isn’t’” /END
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