New petition UK Save Savannah Victora-May - Prevent Another ME/CFS Tragedy



Savannah is asking for anyone who can to email the chief medical director at the hospital. The Canary has drafted a template email, which can be sent as is, or adapted.

Send an email to stop this abuse & improve care for Savannah before it's too late!
 
Jonathan Edwards said:
This case does seem to highlight the absurdity of an ME?CFS plan that aims to provide services for mild/moderate cases but completely ignores the severe. I suspect the inability of charities to help partly reflects the absence of much medical expertise.
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I think the issue as per usual is that the staff treating her seem to think she doesn’t have ME she’s just addicted to cyclazine/attention seeking/being difficult.

This is a problem we all face but it’s a million times worse when you’re so severe.
 
Jonathan Edwards said:
This case does seem to highlight the absurdity of an ME?CFS plan that aims to provide services for mild/moderate cases but completely ignores the severe. I suspect the inability of charities to help partly reflects the absence of much medical expertise.
Click to expand...
And yet following the sad story of Maeve Boothby O' Neill Devon and Exeter now have procedures for treating severely ill ME/CFS patients ( how good it is I do not know , but there has been some learning and changes in procedure ) .
It seems that this is only Devon and Exeter specific - why no national guidance ?
Sadly it looks as though it will be BACME ,( with their current focus on severe) who will fill the gap
 
Amw66 said:
And yet following the sad story of Maeve Boothby O' Neill Devon and Exeter now have procedures for treating severely ill ME/CFS patients ( how good it is I do not know , but there has been some learning and changes in procedure ) .
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My impression was that someone saw a commercial opening for a commissioned service. The whole thing seemed to be an exercise in whitewashing.
 
The institutional void. This keeps on happening. We make noise about it. A couple higher ups acknowledge it if we’re lucky.

Nothing changes.

It doesn’t feel like the system is broken. It feels like the system doesn’t care, doesn’t exist to care.

I sometimes wonder if Simon being on the board of the NHS has a lot to do with this. But at the same time I’m not exactly convinced it would be any much better if he weren’t.

There’s really a stubborn prejudice.

It makes me worried about “raising awareness” about ME in my country. Is this what happens when you raise awareness? More awareness = more medical prejudice?

Rather the mystery illness framing than the “ME -> Addict / Scrounger” thing.
 
I honestly think it’s prejudice.

There will be staff involved who are prejudiced and either don't think ME is real, or don’t care. They have a “difficult” patient so goodwill erodes and suspicion increases. Staff who weren’t particularly prejudiced start to agree that something isn’t right with this patient.

We all know that anyone with decent medical experience of ME and a decent level of severe ME knowledge would look at this patient and say “yup, this is exactly what I’d expect to see, absolutely nothing about this seems fake/attention-seeking/munchausens/depression/just likes being a pest, that’s Severe ME doing it’s usual thing”.
 
Both the ME association and the 25% group have Dr Speight as an advisor, with extensive experience in managing very severe cases. Savannah's own Dr is Dr Weir, so ditto. Action for ME has Dr Strain, who wrote the mysterious “for our eyes only” severe m.e care guide.

I don’t think the Problem is a lack of available guidance or experience, but scepticism of the hospital medical staff, in a context of a very severe illness that has for decades been misframed & trivialised; NHS rigidity - refusal to be guided by private/ retired drs who do have experience and charity failure to campaign for any severe ME NHS medical expertise to be built up or research on more severe expressions of this illness.

I don’t understand the purpose of Savannah’s medical admission this time but it looks like the severe experience in the hospital hasn’t improved, whilst the DHSC/NHS after 3 years of talks, continue to debate behind the scenes on whether they need to bother & its “cost-effective” to do anything.
 
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