This week has been NHS Experience of Care Week, and on Wednesday evening there was a Twitter storm where patients, carers and health professionals were encouraged to share their evidence about experiences of care in the NHS, using the hashtag #ExpOfCare. Here’s a summary of my tweets and those of others with M.E. who have joined in this week.
We shared blogs from people with M.E. about their care experiences, and I also shared the report from Action for M.E.’s Time to Deliver survey of over 2,000 people with me, which includes views about their care, barriers they face in healthcare, and their suggestions for improvement, including people with severe M.E. The survey is carried out every 5 years to track the progress of campaigns and healthcare education.
The tweets were well received and were shared by doctors, nurses and pharmacists. Not a huge number of likes and retweets, but it’s quality not quantity! Tweets about guest blogs of experiences of people with other conditions are at the bottom of this page.
Experiences of people with M.E.
We matter and our experiences matter #pwME #ExpOfCare #MEawarenesshour https://t.co/Yek6vjtkL4
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Sharing some blogs by people with M.E. about their experience of care #ExpOfCare #pwME #MEawarenesshour aprescriptionforme.wordpress.com/category/our-s…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
A personal experience of the NHS during an episode of paralysis
buff.ly/2n7N8Jb #ExpofCare #pwme
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Jenny Tips for ME 🥄 (@TweetTipsforME) March 22, 2017
I love the NHS but it could do better for #PwME. My experience of care in the NHS with #MyalgicE #MEcfs #Expofcare wp.me/p4dXAG-t7
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Sarah Reed (@Cheggers1971) March 24, 2017
concerns re patient testimonial credibility explained using Fricker's concept epistemic injustice #ExpofCare #pwme buff.ly/2mQCvss
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Jenny Tips for ME 🥄 (@TweetTipsforME) March 22, 2017
#May12BlogBomb 2015 - a collection of blogs by people with M.E. #ExpOfCare #pwME #MEawarenesshour aprescriptionforme.wordpress.com/2015/08/12/may…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Hidden faces of M.E. guest blog by @firestormmer: My early struggles with M.E. #ExpOfCare #pwME #MEawarenesshour aprescriptionforme.wordpress.com/2015/09/19/hid…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Hidden faces of M.E. blog: Out of sight, out of mind #severeME but no healthcare #ExpOfCare #pwME #MEawarenesshour aprescriptionforme.wordpress.com/2015/09/15/hid…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Survey of 2,000 with M.E. Barriers in care & what would make a difference, P12-21 #pwME #ExpOfCare #MEawarenesshour actionforme.org.uk/uploads/pdfs/m…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Care experience of housebound #severeME patients, P26 #pwME #ExpOfCare #MEawarenesshour actionforme.org.uk/uploads/pdfs/m…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
My experience of the @NHSEngland #accessibleinfo standard for my M.E. memory&communication problems #ExpOfCare #pwME aprescriptionforme.wordpress.com/2017/02/05/tel…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Voices of people housebound with #severeME from 2014 survey on their #ExpOfCare #pwME #MEAwarenesshour
actionforme.org.uk/uploads/pdfs/m…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
#ExpOfCare of someone with #severeME and carer health also severely affected as a result. Thank you for sharing thi… twitter.com/i/web/status/8…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Just thinking this would've been good to share for #ExpofCare #pwme
Minor Ailments Major Obstacle | Tips for ME tipsforme.wordpress.com/2017/01/03/sic…
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Jenny Tips for ME 🥄 (@TweetTipsforME) March 23, 2017
Also this epic post is likely of interest to #ExpofCare medics
10 insights on life: Awareness through ME
#pwme tipsforme.wordpress.com/2016/05/05/12m…
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Jenny Tips for ME 🥄 (@TweetTipsforME) March 23, 2017
Experiences of people with other conditions
Guest blog about patient experience "collecting illnesses" on @pharminpractice website #ExpofCare aprescriptionforme.wordpress.com/2016/03/18/emi…
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Emily Beardall (@EmilyBeardall1) March 22, 2017
Guest blog: My experience of good self-harm care at a pharmacy #ExpOfCare aprescriptionforme.wordpress.com/2016/04/15/gue…
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Emily Beardall (@EmilyBeardall1) March 22, 2017