Karen Hargrave @karenlhargrave.🦋.social Profile picture
Independent researcher & policy analyst | @karenlhargrave.bsky.social | Research Associate @ODI_Global | Co-founder #ThereForME https://t.co/qzdifn9AUg

Oct 17, 2024, 11 tweets

🧵 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…

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…

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…

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…

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…

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…

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…

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…

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” 🥱

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