Opportunity to inform Forward-ME on what severely ill PwME want from a specialised service?

[Sasha]

Sorry if I've missed this being discussed elsewhere but I was just watching the video of Katherine Cheston's PRIME presentation on the AfME Big Survey, and there was this question from the floor (timestamped link here):

"Hi, I'm Caroline Leary, Chair of Forward-ME. One of the things that Forward-ME, which is an umbrella body of all the main charities, is currently doing is holding the Government to account for the actions in their somewhat underwhelming delivery plan, final delivery plan.​

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"One of those actions is is to develop a specialized service or to look at developing a specialized service for people who are very severely affected.​

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"What I've got is a huge amount of understanding of what's wrong. What I haven't got is a huge amount of understanding of what people who are very severely affected would most want from a service.​

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"And I'd be incredibly grateful if you could trawl all the feedback, all the the the data that you've got to see if there is anything that that actually helps us understand what people who are very severely affected would most want or would most find useful and accessible."​

This seems like a great opportunity for us to feed in, but the request also seems to suggest that Rorward-ME aren't aware that S4ME forum members are on tap to answer exactly this kind of question. I wonder if they'd like to engage, particularly if there's any kind of structure that they'd like to put on their enquiry.

I can't remember enough about the Big Survey questions to know whether the Big Survey was geared up to provide answers to this specific question.

Any thoughts on how to take this forward?

 

[Jonathan Edwards]

There is a meeting to discuss severe and very severe services at ForwardME on Thursday. We could set up a poll thread here to fill up by then.

 

[Jonathan Edwards]

Members of the ForwardME severe and very severe services group know about S4ME and read here. Caroline may have hoped for something more formal in the way of. poll but we could have a go at suggestions - I have set up a thread.

 

[Sasha]

Members of the ForwardME severe and very severe services group know about S4ME and read here. Caroline may have hoped for something more formal in the way of. poll but we could have a go at suggestions - I have set up a thread.

Thank you! That's all very good timing.

Here is the thread, for anyone who is looking.

 

[hotblack]

Thank you @Sasha for bringing this up and @Jonathan Edwards for trying to herd the S4ME cat population

 

[bobbler]

Thank you @Sasha for bringing this up and @Jonathan Edwards for trying to herd the S4ME cat population

On a side note I like us being referred to a s4 cats - quite a ring to it , like you get jazz cats don’t you?

 

[hotblack]

On a side note I like us being referred to a s4 cats - quite a ring to it , like you get jazz cats don’t you?

That’s a lovely link!