Helen Goss @HelenMMGoss Twitter profile

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Helen Goss

4 months

🚨UPDATE🚨 An internal investigation is underway. Today we received a letter stating refusal to discharge & offering appointment or inpatient stay. 1: Comms should go via @TalkToThompsons 2: We've been down this road b4. 3: These options cause harm. #LongCovidKids #LongCovid

Helen Goss

@HelenMMGoss

5 months

Today, our family announce formal legal action after years of denied care for Anna's #LongCovid #LongCovidKids We aim to hold @NHSGrampian accountable for consistent failures in their duty of care, secure the healthcare Anna needs, & drive positive change. Our statement👇

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Helen Goss

@HelenMMGoss

5 months

Today, our family announce formal legal action after years of denied care for Anna's #LongCovid #LongCovidKids We aim to hold @NHSGrampian accountable for consistent failures in their duty of care, secure the healthcare Anna needs, & drive positive change. Our statement👇

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Helen Goss

@HelenMMGoss

11 months

A family member drew this for me yesterday and I'm a bit in love with it 😂 Feel like it should be a new digital character that goes on adventures around the world causing mischief. It's going to need a name... Suggestions? #LongCovid #LongCovidKids #COVID19 #CovidIsNotOver

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Helen Goss

@HelenMMGoss

5 months

The first case of legal action for #LongCovidKids in 🏴󠁧󠁢󠁳󠁣󠁴󠁿 It may be the first globally. "Catherine McGarrell, of @TalkToThompsons said: "As a result of the multiple failings & repeated failures, Anna's condition is much worse than what it should be"

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Helen Goss

@HelenMMGoss

1 year

What's it like to have a kid with #PANS ? Not these🍳🍳 👉 Paediatric Acute-Onset Neuropsychiatric Syndrome. In March '20 we had #COVID19 for the 1st time. #SARSCoV2 triggered #LongCovidKids & #PANS . We've since had 2 further infections. Each one has made her worse. 🧵 1

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Helen Goss

@HelenMMGoss

5 months

Today, our family announce formal legal action after years of denied care for Anna's #LongCovid #LongCovidKids We aim to hold @NHSGrampian accountable for consistent failures in their duty of care, secure the healthcare Anna needs, & drive positive change. Our statement👇

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Helen Goss

@HelenMMGoss

1 year

It's ironic that on #LongCovidAwarenessDay we are too broken by #LongCovid to participate. So from our sick bed to yours, thank you for your support, love and advocacy over the past 3 years. Let's hope that year FOUR of #LongCovidKids #LongCovid brings better days 💜

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Helen Goss

@HelenMMGoss

1 year

LDN is a helluva drug. One week back on it... "Mummy come in! Come and reset your vagus nerve with me!" FML. Ok. My vagus nerve has now packed up its receptors & left. Feet mildly hypothermic. #NorthSea She's back to the sofa with PEM & PESE but worth it! 💜 #LongCovidKids

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Helen Goss

@HelenMMGoss

6 months

Anna developed #longcovid after #covid March '20. She was 7yrs old. She turned 11 last wk. Hasn't been to school in 3.5yrs. No swimming, horse riding, tennis. She now uses a wheelchair. Every infection makes her worse. We were reinfected 2 wks ago. #LongCovidKids #POTs #PANS

Long Covid Kids - #LongCovidKids

@LongCovidKids

6 months

62,000 children in the U.K. are living altered lives. Before contracting #COVID in March 2029 Kitty was a fit,strong ballet dancer. She continues to live with symptoms of #LongCovid . The experiences of #children & young people must be heard as part of the @covidinquiryuk .

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Helen Goss

@HelenMMGoss

5 months

🙏everyone who has reached out publicly & privately with support & kindness. It truly means so much 💕 Received so many messages from @NHSGrampian Paed patient parents. The same senior management names keep cropping up 🧐 We WILL have accountability. #LongCovid #LongCovidKids

Helen Goss

@HelenMMGoss

5 months

Today, our family announce formal legal action after years of denied care for Anna's #LongCovid #LongCovidKids We aim to hold @NHSGrampian accountable for consistent failures in their duty of care, secure the healthcare Anna needs, & drive positive change. Our statement👇

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Helen Goss

@HelenMMGoss

1 year

Q: How does one access education for a child with #LongCovid ? A: I'll let you know when I find out This is a story about a 7yo who developed Long Covid in 2020 & was abandoned by the Scottish education system. The child is now 10yo. What does her future hold? #LongCovidKids 1/

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Helen Goss

@HelenMMGoss

26 days

This is in the @NScotlandNews today so I can share it. It's the final Primary 7 photo of the whole year. One pupil is missing. Invisible. Forgotten. I'm not a crier, by nature, but here we go... Floodgates opened. #LongCovid #LongCovidKids #Inclusion #equality #disability

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Helen Goss

@HelenMMGoss

1 month

That was emotional af 😱🥹 Took a few snaps but I mostly stood in the street in my PJs looking up with my mouth open and the occasional "omg wow" for the entire show. If humanity is to go extinct, please let it be by an extinction level solar storm. #Auroraborealis #solarstorm

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Helen Goss

@HelenMMGoss

11 months

@PrognosticChats May I add a trailer to a sequel? Starring Consultant Cardiologist @Sunny_Rae1 Full movie here 👉 #teamclots #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

8 months

@Tashishome @pan_accindex Awful to read how many women have been left by their partners because they suddenly became ill with #LongCovid . Mine also left me and my daughter with LC. Jokes on him, I'm in "remission" and she's being treated by the best doctors now. His loss. Your comeback will be epic! 🤘

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Helen Goss

@HelenMMGoss

3 months

This one hits hard. Hands up who else feels abandoned by friends or family, or both? 🙋🏼‍♀️ #LongCovid #LongCovidKids #LongCovidAwarenessDay 👇

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Helen Goss

@HelenMMGoss

5 months

Popping on @BBCRadioScot shortly. Live interview... Always risky 😆 Hope @scotgov are paying attention. This is just the beginning. #LongCovid #LongCovidKids

Long Covid Kids - #LongCovidKids

@LongCovidKids

5 months

Tune in and listen to @HelenMMGoss on @BBCRadioScot at 1pm today. #LongCovid #LongCovidKids #Scotland

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Helen Goss

@HelenMMGoss

4 months

Spent last night cleaning blood off the cream carpet. Epic nosebleed in the kid and it scared her to death. No sleep overnight as awake frightened. Only just fell asleep not long ago. This is just horrible. She's really not well after reinfection. #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

5 months

@BBCRadioScot @TalkToThompsons I want accountability. I want an admission of failure. I want it public. I want policy change. I want education for clinicians. I want up to date research embedded in care. I want no other family to go through this (they have & they are) I want an apology for Anna. #LongCovidKids

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Helen Goss

@HelenMMGoss

4 months

@scotgovhealth @jenni_minto The reality of #LongCovid #LongCovidKids Such a shame @scotgov didn't co-produce NHS Inform Long Covid with long Covid charities who are patient experts & patient advocates. Missed opportunity to get it right first time #cooperation #collaboration #coproduction #LongCovidSucks

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Helen Goss

@HelenMMGoss

9 months

@1goodtern I had an ovarian dermoid cyst (do not Google) causing pain so bad I couldn't walk. Gynae: nah, these cysts don't cause pain. Go home. My family got me private surgery (NHS deemed not urgent-18 mnth wait) Cyst was pushing on the sciatic nerve. Post surgery; no pain. Huh...

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Helen Goss

@HelenMMGoss

6 months

Vomiting is a new #COVID19 variant symptom, right? Bc the bathroom has just been painted a glorious shade of beige. Exposed 10 days ago, both v unwell for 7 days; SOB, congestion, antibx for me & now a surprise 3am 🤮 for Anna. Neg tests all week 🤷🏼‍♀️ #LongCovid #longcovidkids

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Helen Goss

@HelenMMGoss

5 months

The mother of a schoolgirl whose life has been "devastated" by long Covid is suing @NHSGrampian for medical negligence in a landmark legal action. Seeking damages for causing "harm & trauma" to her 11yo daughter, Anna, as a result of "repeated" failures.

Helen McArdle

@HMcArdleHT

5 months

@HelenMMGoss says her family has faced 'medical gaslighting' and been forced to incur 'substantial expenses' getting her daughter private treatment👇 Health board sued for medical negligence in landmark long Covid case

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Helen Goss

@HelenMMGoss

3 months

Sending 💕 to all on #LongCovidAwarenessDay Let's not allow @qldhealth Dr John Gerrard ruin our day. He is demonstrably poorly read on the condition & perhaps needs our help to upskill. I won't share the offensive article. @guardian should retract. #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

4 months

"I took him to the pediatrician, who ran blood tests and checked his vital signs. “Could it be #LongCovid ?” I asked. The doctor gazed at me like I said hocus pocus. “Everything looks normal,” he said. But my kid couldn’t function. #LongCovidKids

My Son’s Crushing Long-COVID Journey

Personal Perspective: False assumptions about post-COVID conditions made it hard to find care for my son.

www.psychologytoday.com

Long Covid Kids - #LongCovidKids

@LongCovidKids

4 months

“There’s no mystery here. #COVID can infect almost every cell type in the human body & every organ, the brain, and the central nervous system,” said @AmyProal a microbiologist who is the president of the @polybioRF ” #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

5 months

The family is being represented by @TalkToThompsons and say they are “hopeful” for a positive resolution to the case. Ms Goss is the chief operation officer of charity @LongCovidKids and said funding for the condition is “inadequate and insulting”.

Long covid legal battle for Scots mum over treatment of 11-year-old daughter

Helen Goss, from Westhill in Aberdeenshire, is taking on NHS Grampian after her daughter Anna Hendy caught long Covid.

www.dailyrecord.co.uk

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Helen Goss

@HelenMMGoss

5 months

@BBCRadioScot @TalkToThompsons Paediatric Neurology & Immunology both refused referrals on 4 separate occasions... Each! Private neurology prescribed a med that helped peg pain and gave her ⬆️ mobility. Private Immunology treated her #PANS and she's in remission ✅ Why the barriers to care? #LongCovidKids

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Helen Goss

@HelenMMGoss

5 months

Thank you for having me Hayley 🙏 @BBCRadioScot This isn't about the money. This is about accountability, justice and children's rights. This isn't just about our family. This is about ALL families. #LongCovid #LongCovidKids @TalkToThompsons

Helen Goss | BBC Radio Scotland | On why she is taking legal action...

Read more here. https://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-68017038https://news.sky.com/story/aberdeenshire-mum-launches-legal-action-...

www.youtube.com

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Helen Goss

@HelenMMGoss

5 months

Feel terrible for the teachers. They literally have no say in the matter. Comments full of anecdotal district policies of enforced Covid infection. To what end? #LongCovid #LongCovidKids #SARSCoV2

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Helen Goss

@HelenMMGoss

1 year

I'm sharing this with Anna's permission to raise awareness of #PANS triggered by #SARSCoV2 #COVID19 & to help others understand just how horrific it can be. #PANS + #LongCovidKids ? Two for one. Double-whammy of 💩 My poor girl. Learn more @PandasPans

Are we facing a surge of Long Covid with Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS)?

In the Long Covid Kids Support Services we see a significant number of children with symptoms consistent with a condition called Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) following...

www.longcovidkids.org

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Helen Goss

@HelenMMGoss

5 months

Ms Goss said her family have “tirelessly, navigated & exhausted all avenues within @NHSGrampian . She made strong allegations about the health board, saying she & her family have faced “medical gaslighting, dismissal” & were “consistently” denied NHS care.

Mum to take legal action against NHS over child's long Covid treatment

Helen Goss is seeking 'damages' stemming from what she claims is medical negligence towards her daughter.

news.stv.tv

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Helen Goss

@HelenMMGoss

5 months

🎶Happy birthday to me, feel 103 🎶 #LongCovid 🔥🚨🔥 Later today I have some big news to share. Brace yourselves, I'm coming in hot 🔥🚨🔥 In the meantime, I'm told life begins at 40... So I'd better get dressed 😒

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Helen Goss

@HelenMMGoss

1 year

#PANS is more than explosive rages, tics & hallucinations. There's urinary incontinence, sensory processing dysfunction that can get so bad that bright lights & loud noises are physically painful. It's hell. It's a big reason why we've recently become a single parent family 🙁

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Helen Goss

@HelenMMGoss

5 months

#LongCovid So hot right now. Let's confuse the algorithm into making it #1 by playing a game. Tag your friends and get them to play 😆 🚨Q: What is Long Covid?🚨 ✨Wrong answers only✨ #LongCovid #LongCovidKids #FridayFeeling

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Helen Goss

@HelenMMGoss

5 months

@emilyesfraser My cat has long Covid. Diagnosed. Poor baby has horrendous skin problems now, sleeps all day, can't jump up where he used to and barely goes outside anymore. He also has moments where he looks lost in the house. So sad 😢 he's a lovely boy 🥺

Helen Goss

@HelenMMGoss

6 months

🐱🐾 Cats & COVID-19. In march 2020 when we first became infected with #SARSCoV2 it was very obvious to me that our cats had it too. Especially our 10yo older male. I'd never seen a cat cough before! He was lethargic, off his food, miserable, clingy.

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Helen Goss

@HelenMMGoss

5 months

@_CatintheHat @NHSGrampian @SammieFMc @CounsellingSam @PeteUK7 @long_covid @zalaly @rubyslippahs @Fionasstalker @ChrisCuomo @joaquinlife Thanks Cat, I won't lie, I am terrified of the backlash and the comments from the court of public opinion. However my drive to help my daughter and the wider LC community is stronger. Onwards... it's a battle...

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Helen Goss

@HelenMMGoss

11 months

@jaybirdie1 Thank you Jason. This video was made a year ago. Each of these kids had had #covid19 again at least once which worsened their condition. My own daughter has been bedbound for 7 weeks now with untreated #POTS . #LongCovid #LongCovidKids need treatment and support.

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Helen Goss

@HelenMMGoss

7 months

Ready to rock n roll. Let's do this... 💪🏻 See you on the other side everyone. I hope I do a good job for the #LongCovidKids and #LongCovid communities 💕

Scottish COVID-19 Inquiry

@covidinquirysco

7 months

@LCKScotland Today's session has adjourned for lunch. We will return at 2 pm, when we will hear evidence from @LCKScotland . Watch the broadcast via the Inquiry's website or YouTube channel:

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Helen Goss

@HelenMMGoss

4 months

Thank you so much @Sunny_Rae1 and @mmgeissler ! More of this please @BBCNews ! So refreshing to see clinical professionals who are actively researching & treating #LongCovid in the mainstream media. They have a huge amount of knowledge and experience. We must learn from them!

Long Covid Kids Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿

@LCKScotland

4 months

Brilliant interview with @Sunny_Rae1 on @BBCOne Scotland, The Sunday Show with @mmgeissler #SARSCoV2 complications, the risks of developing #LongCovid #LongCovidKids in all age groups and why everyone needs to avoid repeat infections. A must watch ⤵️

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Helen Goss

@HelenMMGoss

1 year

Day 1 of @itvmeridian #LongCovidKids series by @StaceyPooleITV Hannah, 14: "It's like your whole world comes crashing down... I've just been thrown into this & I don't know what to do." 🧵1 #LongCovidKids #LongCovid #COVID19 #MedTwitter #EduTwitter @DrGregorSmith @jasonleitch

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Helen Goss

@HelenMMGoss

1 year

This is not bad behaviour. This is caused by a misdirected immune response to infection = widespread inflammation, including in her brain. Her brain is on fire. She has absolutely no control. She screams until she wretches (and on occasion, vomits) It's scary for her. #PANS 3

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Helen Goss

@HelenMMGoss

2 months

It hasn't been easy to step away for a break. @SammieFMc & I are not very good at pacing or resting 😬 #Covid reinfection = literally no choice but to wait it out until 🤞 we return to baseline. The cognitive hit has been rough this time round 🧠 #LongCovid #LongCovidKids

Long Covid Kids - #LongCovidKids

@LongCovidKids

2 months

A message from our board of trustees. Meet our members of the board here:

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Helen Goss

@HelenMMGoss

1 year

🙏 Urgent Personal Plea 🙏 I need to find a medical professional in Scotland who would be willing to prescribe Low Dose Naltrexone to my 10 year old. Details below 👇 🙏 Please RT 🙏 #LDN #LongCovidKids #LongCovid #MedTwitter @drclairetaylor @DrGrounds @mairi_stark @LindaBauld

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Helen Goss

@HelenMMGoss

17 days

This is what happens when an article is written about you without your input or consent. PIMS. They withheld information about PIMS. #PIMS and #longcovid are two very different conditions. @thetimes did you ask permission to use our photograph? Please get in touch.

Billy Hanlon

@bhanlon15

17 days

The Times: 'Scottish Covid inquiry: ‘NHS withheld information about long Covid’'

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Helen Goss

@HelenMMGoss

7 months

" #LongCovid is still not being counted & coded in NHS databases properly. We don’t have the numbers & therefore Long Covid appears not to be a big problem, it is easy to hide, and it is being hidden.” #LongCovidKids #SARSCoV2 #PublicHealth #FBFriday

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Helen Goss

@HelenMMGoss

5 months

@BBCRadioScot @TalkToThompsons May 2023 Anna became bedbound after #norovirus . GP refused to visit at home-> Paeds diagnosed #POTS in July. Cardiology didn't know how to treat. I requested a specialist. They said they'd pay. We obtained treatment then @NHSGrampian rescinded the offer

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Helen Goss

@HelenMMGoss

3 months

Thank you @karamballes @BylineTimes CYP living with #LongCovid deserve treatment for their symptoms to promote wellbeing & recovery. Dismissal, minimising & baton passing is unhelpful, stressful & time consuming for everyone. Traumatic for CYP. #LongCovidKids deserve better.

Byline Times

@BylineTimes

3 months

🔴 Long COVID in Scotland: NHS Trust Accused of Medical Negligence The family of a child suffering Long COVID claims they have faced ‘medical gaslighting’ and been consistently denied NHS care, reports @karamballes

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Helen Goss

@HelenMMGoss

6 months

These days accessing healthcare can be ⬆️ risk for #LongCovidKids due to unmitigated #COVID19 Show support for #SafeHealthcare and #MakeHospitalsSafe for ALL. #Tbt mask pic w/ @drclairetaylor Nov 22 bc I'm too poorly to take one today 🤒 @MathesonMichael @jenni_minto @cv_cev

Covid Action Scotland

@ZeroCovidScot

6 months

Patients and staff in health and social care deserve being protected from infection. In the age of Covid, this means high-grade masks, ventilation and air filtering – and infected staff staying staying home on full pay. #SafeHealthcare and #MakeHospitalsSafe @MathesonMichael

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Helen Goss

@HelenMMGoss

11 months

@Mssarahmssarah Yes, sadly. Covid has caused a great deal of harm to children and young people. Repeat infection can worsen symptoms and cause cumulative damage. Please see @LongCovidKids for info and resources. #LongCovid #LongCovidKids #Covid

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Helen Goss

@HelenMMGoss

24 days

This family have been through the most horrifying, unspeakable journey. Endless gratitude to the clinicians who supported, guided and stood up to "the system" on behalf of these kids and their parents. @NHSuk @SocialWorkEng #LongCovid #LongCovidKids

‘It’s destroyed us’: Parents of children with long Covid accused of making it up

Doctors and parents say children are being threatened with being taken into care as medics struggle to diagnose their conditions and families are placed under suspicion

inews.co.uk

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Helen Goss

@HelenMMGoss

9 months

✨Medication procured✨ following a long and very helpful chat with a wonderful pharmacist who was astounded and upset we'd had so much trouble given the circumstances. Let's see if we can get her up, mobile, out the house!? #LongCovidKids #LongCovid #CovidIsntOver #Eris #ba286

Helen Goss

@HelenMMGoss

9 months

🤬 ABSOLUTELY FURIOUS 🤬 Anna still bedbound (3+ mnths) but we privately saw an expert in #LongCovidKids to treat #POTS . Prescription due ystrday. Today: Pharmacy calls 9am - script ready, pls pick up. Anna wakes 3pm. Food ✅ drink ✅ explanation of prescription mission ✅ /1

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Helen Goss

@HelenMMGoss

7 months

It's endlessly infuriating to communicate to policy makers in very clear terms what is happening on the ground does not match up to their *belief* of what is happening on the ground. There is nothing for #LongCovidKids except dismissal & gaslighting. @HumzaYousaf @jenni_minto

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

Ministers are “failing” children with Long Covid amid a refusal to commit more support for patients suffering with the debilitating condition. LCK COO Helen Goss @LCKScotland @HelenMMGoss #LongCovidKids #Scotland #LongCovid

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Helen Goss

@HelenMMGoss

1 year

I'd never heard of #PANS prior to #COVID19 . We were lucky; a very kind person, now a friend, heard me doing an interview on @BBCRadioScot & found me on social media. Soon after, she was diagnosed #PANS by her NHS Paediatrician. Although treatment had to come from elsewhere.

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Helen Goss

@HelenMMGoss

1 year

I can't describe #PANS because words don't capture the horror of your sweet, shy, polite little girl turning into what can only be described as a cross between Samara from The Ring and a full on banshee vampire intent on vengeance and destruction. TW: Video IS distressing. 2

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Helen Goss

@HelenMMGoss

11 months

Always loved Robbie for his spicy, outspoken attitude & been to many live shows (Murrayfield 2003 was amazing!) but "joking" about the illness that has destroyed my kid & left her housebound...? Would you joke if it were your children @robbiewilliams ? #LongCovidKids #LongCovid

Long Covid Kids - #LongCovidKids

@LongCovidKids

11 months

An extremely disappointing example of behaviour from an individual with a platform that could be used to help raise awareness of a preventable disease impacting 65 million people worldwide. #LongCovidKids #LongCovid @robbiewilliams

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Helen Goss

@HelenMMGoss

5 months

“ @NHSGrampian has a #LongCovid project board & a long Covid paed. steering group." 🧐Yes. I attend these meetings. “We also now have a paed long Covid practitioner as well as a paed clinical lead for long Covid." 🧐Not much use without an open clinic.

Mother takes legal action against health board over child’s long Covid treatment

Helen Goss claims NHS Grampian has not provided the care her 11-year-old daughter Anna requires.

www.independent.co.uk

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Helen Goss

@HelenMMGoss

5 months

Final clip @BBCScotlandNews 🙏 @louise_hosie for reporting with kindness & compassion throughout our journey since summer 21. NHSG have 21 days to respond & we go from there. Will update as we go! 🙏 so much for everyone's support today! Means the world to us 💘 #LongCovidKids

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Helen Goss

@HelenMMGoss

1 year

Keep seeing so many of these posts on social media with 100s of replies from parents/carers with constantly unwell children. Wonder how many have #LongCovid and don't even know it. Out of the 100s of responses there must be. Will they know to seek support & where? #LongCovidKids

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Helen Goss

@HelenMMGoss

5 months

@SkyNews found one of our favourite photographs. #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

16 days

Spoke to @pa media who wrote the original article & sold to other outlets, inc @thetimes & @WeAreSTV Suggested we resolve w/an investigative piece about #PIMS & #LongCovidKids gov. cover up. Following the PO & infected blood scandals, let's discuss the Kids Covid scandal.

Helen Goss

@HelenMMGoss

17 days

This is what happens when an article is written about you without your input or consent. PIMS. They withheld information about PIMS. #PIMS and #longcovid are two very different conditions. @thetimes did you ask permission to use our photograph? Please get in touch.

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Helen Goss

@HelenMMGoss

8 months

Why, oh why @scotgovhealth has this not been communicated to the public? @HumzaYousaf @MathesonMichael @jenni_minto @P_H_S_Official @NHSScotland @DrGregorSmith @jasonleitch by doing nothing, you are doing harm. To children. #SARSCoV2 #CovidIsntOver #LongCovid #LongCovidKids

Dr Claire Taylor

@drclairetaylor

8 months

1/Covid is a vascular disease. Even in children. 🩸 Why are the Sun&the mirror today reporting a warning about children&Covid from a paper from December 2020?? @Sunny_Rae1 and I talked about thrombotic microangiopathy a YEAR ago on Twitter space

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Helen Goss

@HelenMMGoss

1 year

Audio hallucinations are part & parcel. Good names tho! When she calms (and is dosed with anti-inflammatories) she is apologetic & horrified at her behaviour. She regularly asks "what's wrong with me?" "when will I stop being like this?" "why is this happening to me?" #PANS 5

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Helen Goss

@HelenMMGoss

6 months

I love that this has a community note attached to it already. Washing your hands is great but it won't stop you catching an airborne virus 🤦🏼‍♀️ Poor messaging from NHS and public health bodies. #CovidIsAirborne #MaskUp #LongCovid #LongCovidKids #SARSCoV2

NHS

@NHSuk

6 months

Washing your hands with soap and water is one of the easiest ways to protect yourself and others from viruses like norovirus, flu and COVID-19 - and it helps reduce pressures on healthcare services. ➡️

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Helen Goss

@HelenMMGoss

8 months

Perhaps @BorisJohnson should learn what Gulf War Syndrome actually is. "Gulf War vets were exposed to a unique mix of hazards not previously experienced during wartime." Then he can come & look my bedbound daughter in the eye & tell her #LongCovidKids is bollocks 🤨 #LongCovid

Long Covid Support 🌍

@long_covid

8 months

2/3 Prof Brightling said: “I’m deeply saddened and extremely angry at the same time. I’m not even sure what he means – bollocks to the science or does he mean bollocks to the patients?” #WeNeedAnswers #LongCovidRuinsLives

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Helen Goss

@HelenMMGoss

6 months

Apparently so. Faint but +ve test for me. -ve test for Anna but after 🤮 last night and the other end this morning, suspect +ve will come soon. It's fun that #covid no. 4 is sponsored by our own family. ✨ Where are the public health Comms? ✨ #LongCovid #LongCovidKids

Helen Goss

@HelenMMGoss

6 months

Vomiting is a new #COVID19 variant symptom, right? Bc the bathroom has just been painted a glorious shade of beige. Exposed 10 days ago, both v unwell for 7 days; SOB, congestion, antibx for me & now a surprise 3am 🤮 for Anna. Neg tests all week 🤷🏼‍♀️ #LongCovid #longcovidkids

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Helen Goss

@HelenMMGoss

3 months

@LibDemPatrick Parents groups everywhere are full of posts about kids being continuously ill without breaks, how incredibly difficult it is and how much school and work they're all missing. I am not sure when the penny will drop. Will it ever?

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Helen Goss

@HelenMMGoss

3 months

Amazing job, everyone! So sorry we can't be there. Reinfection has caused Anna & I to worsen our #LongCovid #LongCovidKids baseline. Hopefully tempory, but who knows. @scotgov @scotgovhealth @neilcgray @jenni_minto @HumzaYousaf I hope you're listening. #LongCovidAwarenessDay

Long Covid Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿

@LongCovidScot

3 months

We have arrived at @ScotParl with @ZeroCovidScot to remind the MSPs ahead of tonight's debate that #LongCovid hasn't gone away and more support is urgently needed. #LongCovidAwarenessDay

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Helen Goss

@HelenMMGoss

4 months

Roses are red Meds are expensive Where is the healthcare That is effective? I will never be a poet. #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

1 year

@Sunny_Rae1 @neiljshaw please take this article down or change language. The study does not suggest laziness. #LongCovid is far from laziness. Symptoms are debilitating and impact daily life for adults & children. Please feel free to contact @long_covid & @LongCovidKids to understand LC.

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Helen Goss

@HelenMMGoss

8 months

A joint letter to @HumzaYousaf from @jackiebmsp @agcolehamilton @Sandeshgulhane @LongCovidKids @LongCovidScot Where's the funding for the promised healthcare? #LongCovidKids Yousaf urged to provide answers on #longCovid support funding via @pressjournal

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Helen Goss

@HelenMMGoss

8 months

I support the call by #LongCovidKids that @covidinquiryuk appoint a paediatric Long Covid expert witness to help them understand what has happened to my child and all children and young people living with #LongCovid . Families deserve answers. #GiveUsHope #ListenLearnHope

Long Covid Kids - #LongCovidKids

@LongCovidKids

8 months

Live from the @covidinquiryuk #GiveUsHope #ListenLearnHope #LongCovidKids @PIMS_Hub @LongCovidSOS @long_covid

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Helen Goss

@HelenMMGoss

9 months

Wow! Strongest I've ever seen it here! #Auroraborealis #aberdeenshire #northernlights

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Helen Goss

@HelenMMGoss

16 days

Pretty sure we can come up with a better name... Kids Covid scandal Covid in Kids scandal #LongCovidKids scandal #LongCovid scandal Help me out - what would you name it? Either way, it's a scandal and I'm primed to expose it. Who's with me?

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Helen Goss

@HelenMMGoss

5 months

Find @LongCovidKids on #TikTok Please amplify so we can reach as many families as possible who may need support 🫂 #LongCovid can be such an isolating condition and no one should be alone.

TikTok · Long Covid Kids

Check out Long Covid Kids’s video.

www.tiktok.com

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Helen Goss

@HelenMMGoss

1 year

6 months of antibiotics, prescription anti-inflammatories, high dose antihistamine & melatonin. After only 1 wk the difference was night & day. Like the mist had lifted 🎉 It's not a complete cure, but symptoms are significantly less. Of course the #LongCovid symptoms remain 😔

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Helen Goss

@HelenMMGoss

5 months

Do you wanna build a snowman? #uksnow #aberdeenshire #snow

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Helen Goss

@HelenMMGoss

5 months

We aren't getting this level of public health messaging in Scotland. We aren't getting *any* public health messaging on #LongCovid #LongCovidKids in Scotland. Why not? @HumzaYousaf @MathesonMichael @jenni_minto @DrGregorSmith @NHSNSS @P_H_S_Official @JohnHardenED

Victorian Department of Health

@VicGovDH

5 months

Jordan got COVID in January 2022, & his life hasn’t been the same since. He shares how his life has been impacted by long COVID & urges Victorians to stay ahead of the virus with protective steps. Learn more about the symptoms & how to stay safe: 1/2🧵

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Helen Goss

@HelenMMGoss

1 year

Some episodes last 30 mins, this one lasted 2+ hours, her longest was ~6hrs. There have been times where I was scared for my safety, her safety, the cats safety. Unsure if I should call an ambulance, CAMHS or the police... or if the neighbours would beat me to it. #PANS 4

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Helen Goss

@HelenMMGoss

13 days

Spontaneous space with @drclairetaylor and @Sunny_Rae1 hosted by @AaronCa11 and co-hosted by @PeteUK7 Rockstars in one place! #LongCovid #LongCovidKids 👇👇👇

A 😎 Long Covid + MECFS Billboards

@AaronCa11

13 days

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Helen Goss

@HelenMMGoss

5 months

Thank you for chatting today @northsound1 my local radio 💘 This is very raw & from the heart. Why would @NHSGrampian Paed Immunology say they couldn't help when a private Immunologist successfully treated her? #PANS #LongCovidKids #LongCovid #POTS

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Helen Goss

@HelenMMGoss

5 months

@1goodtern @NHSGrampian @SammieFMc @CounsellingSam @PeteUK7 @long_covid @zalaly @rubyslippahs @Fionasstalker @_CatintheHat @ChrisCuomo @joaquinlife Ah you're lovely, thank you! Best bird on the bird app! Massively appreciate the support from the community. We're all in this together. We've played nice for years so now it's time to enforce change through the law. I'm only just getting started.

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Helen Goss

@HelenMMGoss

9 months

🤬 ABSOLUTELY FURIOUS 🤬 Anna still bedbound (3+ mnths) but we privately saw an expert in #LongCovidKids to treat #POTS . Prescription due ystrday. Today: Pharmacy calls 9am - script ready, pls pick up. Anna wakes 3pm. Food ✅ drink ✅ explanation of prescription mission ✅ /1

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Helen Goss

@HelenMMGoss

1 year

Back to giggling and chatting like the fire has been dampened. But the ashes are still smouldering - notice the stutter. Sometimes this is when the tics kick in. Sometimes the tics won't stop and will reignite the fire. The inevitable " #PANS hangover" follows the next day. 6

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Helen Goss

@HelenMMGoss

1 month

Just had this through from our school (which she hasn't been able to attend since 2020) #SARSCoV2 is lumped in with cold and flu viruses. Why @P_H_S_Official ? Where is the evidence base for this? @neilcgray might want to have a word. #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

1 year

🎉Mission accomplished🎉 LDN prescription on its way thanks to Dr Ben Sinclair @MensHealthTips 🙏 Thank you so much to everyone who offered suggestions. Twitter can be amazing sometimes. ✨ New mission: restart LDN, get out of bed/darkened room, live. #longcovidkids #longcovid

Helen Goss

@HelenMMGoss

1 year

🙏 Urgent Personal Plea 🙏 I need to find a medical professional in Scotland who would be willing to prescribe Low Dose Naltrexone to my 10 year old. Details below 👇 🙏 Please RT 🙏 #LDN #LongCovidKids #LongCovid #MedTwitter @drclairetaylor @DrGrounds @mairi_stark @LindaBauld

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Helen Goss

@HelenMMGoss

10 months

Unbelievable it's been 3.5 years now. Where is @scotgov compassion? Fund NHS services appropriately before more kids reach this milestone @HumzaYousaf @MathesonMichael @jenni_minto #POTS #Dysautonomia #pwME #LongCovid #LongCovidKids @agcolehamilton @jackiebmsp @Carolineslamb

Fiona Stalker

@Fionasstalker

10 months

"3 & a half years into this ...she's the worst she's ever been. She’s almost completely bed bound" - @HelenMMGoss on her daughter Anna's Long Covid battle. Helen - from Aberdeenshire - says the 10 year old has had two years of no education. More #Drivetime @BBCRadioScot 1740

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Helen Goss

@HelenMMGoss

3 months

Dr Iain Kennedy is discussing "droplet dogma" and how @scotgov et al ignored (and continue to ignore) the airborne nature of #SARSCoV2 Healthcare workers and the general public have been fed incorrect and out of date public health info re: transmission from the beginning.

Scottish COVID-19 Inquiry

@covidinquirysco

3 months

@sicsmembers @BMAScotland We will now hear evidence from Dr Iain Kennedy of @BMAScotland . Watch the broadcast online:

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Helen Goss

@HelenMMGoss

9 months

Weather suddenly changes to cool & autumnal 🍂🍁 Me: instant sinus infection 👏 Anna: sleep improving, spirits lifted, got out of bed, dressed, walked to the car, completed a drive through Starbucks chatting away the entire time 😱🎉 Meds working!? #LongCovidKids #LongCovid

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Helen Goss

@HelenMMGoss

1 year

The past 3 yrs have been a genuine hellscape. Trapped in #LongCovid purgatory between infection & recovery. Anna's health took a nosedive. How to access healthcare when you're bedbound? With great difficulty. When there's nothing left to lose; Tiktok 🫥

TikTok - Make Your Day

TikTok - trends start here. On a device or on the web, viewers can watch and discover millions of personalized short videos. Download the app to get started.

www.tiktok.com

Long Covid Kids - #LongCovidKids

@LongCovidKids

1 year

#MedTwitter help 🙏 We have a child w #LongCovid in #Scotland who had been able to function at home. Mum is worried as child has been in bed for a month‼️ GP is refusing to visit as its ‘just Long Covid’. Child has some new symptoms. advice welcome 🙏 #LongCovidKids

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Helen Goss

@HelenMMGoss

3 months

Made these back in the summer bc I kept missing the postie & deliveries! A few people asked for them, so I ordered a bunch. Then promptly forgot about them 🤏🧠 Sold at cost. Any donos go to @LongCovidKids & @long_covid 🙏💖 #LongCovid #LongCovidKids

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Helen Goss

@HelenMMGoss

1 year

Wonder if ASD charities are aware UK Paeds & LC clinics are attributing Long Covid to undiagnosed ASD? Let's go over this slowly... Autism 👏 is 👏 not 👏 caused 👏 by 👏 a 👏 virus 👏 Lazy medicine. @RCPCHtweets @RCPCHScotland @NHSEngland @NHSScotland @Autism @AutismCapital

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Helen Goss

@HelenMMGoss

9 months

Agree, @SalWitcher Perfect demonstration of minimising the suffering #COVID19 has caused & has yet to cause. Language matters; "blip" and jokes are not appropriate for science comms. As for the #LongCovid #LongCovidKids bit. Anyone like to pick this apart to help @jasonleitch ?

Dr Sally Witcher

@SalWitcher

9 months

Another masterclass in minimising from National Clinical Director @jasonleitch on #Drivetime #BBCRadioScotland @Fionasstalker . I've got to hand it to you, Jason, you've got the Covid minimising thing down to a fine art. Though to be fair, you've had a lot of practice🧵

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Helen Goss

@HelenMMGoss

11 months

“like a complete depletion of the essence of who you are, of your life force,” If you struggle to explain to friends & family what #LongCovid #LongCovidKids fatigue feels like, have them read this article by Pulitzer prize winner @edyong209 Spot on 👏

Fatigue Can Shatter a Person

Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.

www.theatlantic.com

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Helen Goss

@HelenMMGoss

11 months

Rapid COVID tests miss 90% of asymptomatic cases. Meanwhile testing rates have plummeted, data isn't being collected, public health messaging is a shambles. Our communities deserve better. Our children deserve better. #CovidIsNotOver #LongCovid #LongCovidKids #MaskUp

laurie allee (retired account)

@laurieallee

11 months

"Rapid COVID tests miss 90% of asymptomatic cases But if the tests work much better when taken three times over the course of several days."

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Helen Goss

@HelenMMGoss

1 month

Day 1: 6wk trial of Doxycycline to treat <gestures broadly> Following a deep dive with my Doc into my sordid hx of; 🪲 insect bites 🎯 Bullseye rashes 😴 #pwME 💊 #LongCovid symptom improvement on doxy for prev sinus infections There's a distinct possibility of underlying #Lyme

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Helen Goss

@HelenMMGoss

8 months

Where were the warnings @P_H_S_Official @scotgovhealth @NHSScotland ? Glad its finally making mainstream but how many kids have been damaged due to inaction from those in power who are meant to protect the population? Negligent. #LongCovid #LongCovidKids

Grim health warning for any children who test positive for Covid

Scientists have revealed another side effect of Covid-19 which can mainly effect children and teenagers - it comes after they launched a study to see the impact the bug had on cardiovascular health

www.mirror.co.uk

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Helen Goss

@HelenMMGoss

2 months

@NeurologistMom Infuriates me when I have to explain over and over and over again to some people (including clinicians) that Anna's #LongCovid insomnia is not a sleep hygiene issue. Sleep hygiene has been tried, tested, retested in different combinations and failed every time. #LongCovidKids

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Helen Goss

@HelenMMGoss

4 months

I wish more people understood this. I am frequently looked at like a crazy person when I ask people to mask bc *any* infection for Anna can be life changing. Lowered baselines. Back to fully bedbound. It's like they don't believe it despite previous experiences of exactly that.

Kelly

@broadwaybabyto

4 months

People with dysautonomia tend to be higher risk for complications from viral or bacterial infections and need to take precautions to avoid them. I had this condition before the pandemic and it’s put me in hospital on numerous occasions - usually due to inability to manage BP /11

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Helen Goss

@HelenMMGoss

1 year

All we are asking is an email every so often with info on what the class is doing. What book are they reading? What Maths & English are they doing? What's the term topic? Then we can follow at home. Where is the inclusivity @EducationScot @Aberdeenshire @SchoolCrombie ? end/

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Helen Goss

@HelenMMGoss

1 year

Thanks to the incredible families @PandasPans & the support of those in @LongCovidKids services, we found a Professor of Paediatric Immunology in London (private self-pay 💸💸) Half the battle is finding a clinician who knows #PANS & is willing to treat. He gave me my girl back.

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