1/25 When I was a brand new Mum to @JasmineMarwick my Health Visitor told me to remember that I was the expert of my child and that HCP’s were there to guide and help me.

I often think about those words…..

2/25Aug 20 when Jasmine fell unwell & immediately too tired to attend school or walk up a flight of stairs without collapsing no one mentioned or tested for Covid but I knew it wasn’t the blue light on her phone keeping her awake that made her fatigued as suggested by the Doctor

3/25 So we kept going back…….

In Feb 21 when we finally got to see the Paediatrician I didn’t think it was ‘good news’ as they said after they bent her hand back & said that there was nothing neurologically wrong with Jasmine. I wanted answers.

4/25 In May 21 the same Paediatrician by 1 in person appointment concluded she had ‘Fatigue?’ and the best thing to do was for her to go back to school, I didn’t agree, I was incensed by the lack of any real tests or diagnosis but we did what they said.

5/25 Therefore 2 weeks into term in Sep 21 when Jasmine got the #Delta variant of #Covid I knew it was not a good thing, but then we also realised when she felt more but worse of the same that the previous year she’d been suffering #PostCovid too!

6/25 After pleading for help in Nov 21 we spoke to the same Paed who despite Jasmine’s recent covid infection then reluctantly diagnosed CFS to be told it could be managed in the community & they didn’t need to see Jasmine again!!

7/25 Jan 22 and we met a wonderful physio who introduced us to @LCKScotland at the same time as I had begun to do some digging. The Physio wasn’t equipped with the resources yet to help us. The Physio also said Jasmine was too unwell with which to do any meaningful work with.

8/25 In Feb 22 I went back to the doctors desperate and said that I’d read the #NICE guidelines for #ME #CFS & I was convinced Jasmine had #POTS as I’d been monitoring her heart rate & it jumps 40 beats just when she stands up.

9/25 The Doctor looked me straight in the eye and said ‘It just can’t be POTS’. So they measured her heart rate as she stood up and it did just as I said it would. Jumped by 40 bpm. The doctor looked at us both and said it was just because Jasmine was anxious.

10/25 This is because she has tremors in her hands. So her hand does shake but this is continuous. Remember though the good news is nothing is neurologically wrong with her.

11/25 In March 22 we went back to doctors & said look we’re learning about #LC & think not only does she have #POTS but I think she has #MCAS The doctor referred us back to Paediatrician. Only for us to have to wait to get a letter saying

12/25 With no mention of #POTS

13/25 By this time Jasmine had lost the fight. What was the point? Who was going to help? Then in July 22 we all got #Omicron, including my Dad who was hospitalised with it & didn’t come home again.

14/25 Aug 22- Everyone else went back to normal & so Jasmine tried to and went to college to do her English & Maths classes & although doing well she was just physically unable to keep going. So she withdrew.

15/25 By Jan 23 we are back to time of year she always feels worst in & again very desperate. So we go back to see GP armed with all the symptoms etc for them to say right let me refer you to Paediatrician again.

16/25 Still waiting for help in Mar h 23 Jasmine amazingly returned to 6th year for one month to try & do her English & Maths exam so she has something, something to show for 3 years off school & at home.

17/25 We went to the GP again on Monday to plead for help with the suspected #POTS & the tremors so she can manage her exams in next few weeks…. Only to be told that the same #Paediatrician has again refused to see her and we only find this out months later.

18/25 3 months short of 3 years & we haven’t had one chest x ray, referral to any kind of specialist & for being 17 & having had Long Covid for nearly 3 years since she was 14 we’ve only ever seen a Paediatrician once in person & that was 26 months ago!

19/25 Whilst I appreciate our beloved #NHS is desperately struggling, we don’t mind waiting, we understand. But what Jasmine has had to go through, like so many other Children and Young People is tantamount to neglect!

20/25 On Thursday there we managed to see the truly incredible @drclairetaylor In an hour Jasmine was diagnosed with yup you guessed it #LC #POTS & suspected #MCAS. Just like I have been saying for over a year!

21/25 Dr Taylor said of course you’d have these with having #LongCovid, but I said no one has ever said she has #LongCovid & as she confirmed it both Jasmine and I welled up with tears in her office.

22/25 Yesterday I sat exasperated & been verging on tears for most of the day. It was her last day of 6th year at school and while all her peers are getting ready to go to Uni. She is only now nearly 3 years later getting to understand what’s wrong with her.

23/25 I knew it. I know my own child, Thursday felt like the first time I got to speak to someone about Long Covid that was so incredibly kind and helpful and well more knowledgeable about #LC than me.

24/25 It’s my child. I’ve read so much. We’ve done studies. We’ve spoken to MSP’s as part of #LongCovidInquiry. I’ve done my bit. It’s all I think about but @NHSTayside and @nhsfife this is not ok and you need to do better for our young people.

25/25 I’m not blaming one person, despite being furious with #Paediatrician, it’s the whole system. You need to disseminate the information to your HCP’s to help my daughter and all the other children feel better again!!