That's awful Sammie. I can imagine how distressing it must be to fear/know as a parent that we're risking harming our own kids' health further by trying to send them in. Kids w LC need protections to prevent further harm and help meet them where they are.

Yes unmet needs (which need supporting, not punishing) and a bunch of them will have things like Long Covid, ME and types of dysautonomia who are physically too ill to attend and learn (but this might not be visible/the kids might look like other kids who are fit and well with boundless energy).

3/

“(Contd) Pasman contracted the similar long covid during the pandemic and, as a patient, did notice that cognitive behavioral therapy as a treatment has risks for people suffering from diseases such as long covid and ME/CFS.”

#PwME #MEcfs #CFS

2/

“The realization that I may have wronged young people with ME/CFS, often seriously ill, is painful," says former GZ psychologist Wieke Pasman, one of the signatories. (contd)”

#MEcfs #CFS #PwME

Hi Till - sorry for the delay.

Here is a link to the Exec Summary: tinyurl.com/Clinic-repor...

Here is a link to the full report: tinyurl.com/Clinic-repor...

All feedback welcome.

2/11. More on our key findings is below, and here’s a link to our report:

t.co/KCvyVU6g3q

#LongCovid
#ClosingClinics

3/11. OVER HALF of adults & children with #LongCovid told us they consider themselves #disabled. Yet services are closing & care is inconsistent.

Long Covid must be recognised as a serious, disabling condition!

Report: tinyurl.com/yc9awcyz

4/11.  61% of children & 28% of adults told us they didn’t know #LongCovid services existed.

How can people access care if they don’t know it’s available?

📢 We need awareness & proper investment.

Read the report: tinyurl.com/yc9awcyz

#ClosingClinics

5/11. NHS commissioning guidelines require #LongCovid clinics to be physician-led & offer in-person care.

❌ 25%+ said they’ve never had an in-person or remote appointment with a physician.

📢 Patients deserve physician-led care!

#ClosingClinics

Report: tinyurl.com/yc9awcyz

6/11. Half of adults & over a quarter of children with #LongCovid told us they were discharged despite ongoing symptoms.

THIS ISN’T CARE - IT’S ABANDONMENT

📢 We need a sustainable care model.

#ClosingClinics

Report: tinyurl.com/yc9awcyz

7/11. Satisfaction with #LongCovid clinics is low, but higher than NHS care overall.

🔴 48% adults & 55% children reported low satisfaction with clinics. Without access NHS dissatisfaction jumps to 77%

📢 Don’t cut specialist care!

#ClosingClinics

Report: tinyurl.com/yc9awcyz

8/11. Specialist UK #LongCovid services are already limited - and more are set to close.

❌ Shut down
❌ Merging with local providers
❌ Facing closure by March 2025 without ring fenced funding

📢 We need action NOW!

#ClosingClinics

Report: tinyurl.com/yc9awcyz

9/11. Only 6% of adults & 1.4% of children told us they were consulted on #LongCovid service changes.

Patients MUST have a say in the care they rely on.

This is not acceptable.

#ClosingClinics

Report: tinyurl.com/yc9awcyz

@ashleydaltonmp.bsky.social @joplatt.bsky.social @jodiegoslingmp.bsky.social @adrianramsay.bsky.social @ruthjoneslabour.bsky.social @labourlewis.bsky.social @laylamoran.bsky.social

11/11. Long Covid services are at risk. We call for urgent action. Key recommendations:

🔹 Reinstate surveillance
🔹 Reverse clinic closures
🔹 Ring-fence funding
🔹 Recognise #LongCovid as a disabling condition.

📢 Take action!

#ClosingClinics

Report: tinyurl.com/yc9awcyz

10/11. Health authorities use GP referrals to justify cutting #LongCovid services, ignoring true demand.

❌ This method is deeply flawed

❌ Many needing care aren’t referred

⚠️ Cuts based on bad data put lives at risk!

#ClosingClinics

Report: tinyurl.com/yc9awcyz