speaking up for everyone affected by severe/very severe #ME. My daughter, my only child, died from ME Oct 2021. Inquest opened. Full hearings expected July 2024
Feb 1 • 13 tweets • 3 min read
Long 🧵My daughter's voice, 4 Jan 2021 (NICE had published revised draft guidance for ME/CFS Nov 2020) 'I have been tired since I was 13. When I was 18 I was diagnosed with CFS/ME. I hoped diagnosis would help, that I would finally get treatment and recover my health. 1/
'I had every potential to be an asset to humanity, and hoped and intended to advance the cause of human flourishing - I achieved A* and A grade A levels, and had offers from Russell Group universities. I had to reject them all. After finishing school in 2012 I quickly became 2/
Dec 29, 2023 • 4 tweets • 1 min read
🧵#Inquest update - I've reviewed the disclosures from the Local Authority and written to the Coroner to ask for the following, missing
contemporaneous records;
Safeguarding records from Jan, Feb, Mar and Sep 2021;
witness statements from:
assessing Social Worker (who never
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completed any assessments)
Approved Mental Health Practitioner (AMHP) - whose interventions began in Mar and actively prevented Palliative Care in Sep even though my daugher was never referred to Mental Health Services before his involvement. A psychiatrist assessed her in
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Nov 28, 2023 • 7 tweets • 2 min read
There will be no justice at Exeter and Devon Coroners Court under Ms Deborah Archer. She is not interested in the facts. She is interested in a fight and the publicity on offer by a Times writer being directly involved in the case.
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Between the Coroner, the barristers and the media, the inquest has been turned into a game. It is no longer about a young woman denied medical treatment because of NHS policy for her diagnosis. It is about who humiliates whom most effectively. There is no need for this.
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Aug 12, 2022 • 14 tweets • 6 min read
Long 🧵Daughter's diary entry, age 12
'The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve' Of course I never asked or viewed. She died 2021 from #ME aged 27. We never identified a viral trigger. Lo & behold,
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Tue 7 Aug 2007 (Three weeks after a peculiar viral infection that lasted exactly 29 days, and recovering well enough to have orthodontic brace fitted; audition for school show; pack & move house; go to best babysitter's wedding with no complaints) 'God I am TIRED!'
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