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Karen Hargrave @karenlhargrave.🦋.social Profile picture
@KarenLHargrave
Oct 17, 2024 • 11 tweets • 5 min read • Read on X
Scrolly
🧵 Parliament is (finally) back in full swing and it’s good to see a round of questions focused on ME and Long Covid. Big thanks to @BellRibeiroAddy, @DrBenSpencer @SharonHodgsonMP

What have we learned?
1️⃣ There are no current plans from NICE to update the 2021 guideline for managing Long Covid

theyworkforyou.com/wrans/?id=2024…Image
2️⃣ DHSC is working off 2023 data when 4.41% of healthcare workers and 5.33% of social workers reported Long Covid

“Long+Covid” theyworkforyou.com/wrans/?id=2024…Image
3️⃣ The gov expects healthcare commissioners to take the 2021 Nice Guideline for ME/CFS “fully into account” and “work towards their implementation over time”

theyworkforyou.com/wrans/?id=2024…Image
4️⃣ DHSC has made no specific assessment of the adequacy of the safety of NHS care for severe and very severe ME patients (at least they’re honest 😅)

theyworkforyou.com/wrans/?id=2024…Image
5️⃣ DHSC officials are (still?) in the process of finalising a summary from the consultation for publication.

Plan still slated for Winter 2024/25 (I’d be surprised though if we see it before end of year based on the current pace)

theyworkforyou.com/wrans/?id=2024…Image
6️⃣ The prevention of future deaths report from #Maeveinquest is being reviewed by DHSC. It is ‘being considered’, they will ‘respond appropriately’ and ‘it is important we learn the lessons’

theyworkforyou.com/wrans/?id=2024…Image
7️⃣ It was not possible to provide info about recent discussions with NIHR in the usual time period - but this will be answered soon

theyworkforyou.com/wrans/?id=2024…Image
That’s all for now - until the next round of parliamentary scrutiny 🥳
Spoke too soon! A couple of late entries…

8️⃣ DHSC has no estimate of the number of people out of the NHS workforce due to Long Covid (😱)

theyworkforyou.com/wrans/?id=2024…Image
9️⃣ DHSC is stalling on further questions about commissioning specialist ME care, developing a national strategy and meeting patient representatives.

All “not possible to answer this question within the usual time period. An answer is being prepared” 🥱 Image
Image

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More from @KarenLHargrave

Karen Hargrave @karenlhargrave.🦋.social Profile picture
Dec 19, 2024
🧵 The results from the public consultation on the interim delivery plan were released this morning

I need time to properly read and digest - but a quick thread with some of the things that jumped out on first glance 👇

gov.uk/government/con…
First of all, consultation wrapped October 2023. That is a LONG wait but the report is finally out.

Decent responses - over 3k & most from ‘individuals’ (presumably patients/carers). Clear throughout that BPS proponents gave opinion. But hopefully outweighed by patient voice. Image
Clear disclaimer that this is just a summary of the consultation and not a government position.

Final delivery plan coming March 2025 Image
Read 12 tweets
Karen Hargrave @karenlhargrave.🦋.social Profile picture
Sep 17, 2024
Hello #ThereForME friends and followers! You may already have seen some of the exciting stuff we have going for #WorldPatientSafetyDay today w/@BinitaKane 🙌

A short 🧵..... (1/)
We are delighted to have @BinitaKane collaborate with #ThereForME on a letter sent today to @wesstreeting @DHSCgovuk from over 200 healthcare workers.

If you wanted a list of healthcare workers that are #ThereForME - this is it! Full text 👇

(2/)

bit.ly/3ZmxwG5
@BinitaKane @wesstreeting @DHSCgovuk #ME patients simply cannot rely on safe and appropriate care from the NHS - we wanted to highlight this on #WorldPatientSafetyDay

Big thanks to @eleanorhayward for writing up the letter for @thetimes (p2 in print!)

(3/)

thetimes.com/uk/healthcare/…
Read 6 tweets

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