Just spoke to the new Suffolk ME and Long Covid Service.

This is whats replaced SNEE. SNEE OT was mostly ok with the odd dangerous pacing up suggestion until my last phone call where they suggested shipping me to the notorious Leeds inpatient unit (of Miller et al. BMJ fame)

And now this new service is just offering 6 weeks of online group courses and a 3 month follow up after that. The intake call was recorded and they had all my OTs notes from SNEE. I said no because what can that even offer me. She insisted it was suitable for all severities. Would not explain what the course content was beyond 'we have a week on brain fog, a week on fatigue' etc and that the goal was 'self management'. So the goal is actually abdicating responsibility of care for the sick.

Six weeks of BACME approved nonsense and they throw you to the wolves. They've repackaged the useless long covid clinic model. These clinics are a literal grift siphoning off taxpayers money at the expense of incredibly sick peoples time and health.

I can only hope JE is right about things changing and actually competent doctors getting involved because this kind of 'help' being deemed appropriate for severe ME/CFS is a Kafkaesque nightmare.
Slightly confused.
Formerly SNEE ICB area had a contract for ME and CFS with provider 'East Coast Community Health' ( based outside SNEE in Waveney Norfolk ICB).Set up in 2013.

Also they had a Long Covid Service at ESNEFT Ipswich Hospital.

The new service fully operational from 1st October replaces both...
 
Slightly confused.
Formerly SNEE ICB area had a contract for ME and CFS with provider 'East Coast Community Health' ( based outside SNEE in Waveney Norfolk ICB).Set up in 2013.

Also they had a Long Covid Service at ESNEFT Ipswich Hospital.

The new service fully operational from 1st October replaces both...
Yes I have dealt with both. The long covid service were beyond useless.

I have been transfered over to this new service from ECCH ME service. Who I hadn't heard from since my OT moved on a couple years ago.

I have spoken to several people from this new service while setting up this appointment and she read out loud from my ECCH notes during the session. Which was kind of creepy.
 
Yes I have dealt with both. The long covid service were beyond useless.

I have been transfered over to this new service from ECCH ME service. Who I hadn't heard from since my OT moved on a couple years ago.

I have spoken to several people from this new service while setting up this appointment and she read out loud from my ECCH notes during the session. Which was kind of creepy.
They will have your record transfered.. plus, the Senior Lead OT from ECCH Louie H, transfered last year to 'SNELCAS' .. now closed under ESNEFT but likely shifted across under tupe
 
Well that went well. I was booked in for a phone appointment at eleven - got home with a good five minutes to spare from visiting my mother in hospital (a whole saga in itself as I can't leave home much under my own steam, so hospital visiting is a bit of a nightmare), having navigated a lengthy detour due to a road closure, and found they'd rung at eight minutes to. If I try returning the call it goes, via a circuitous route, to a mailbox which has a recorded announcement telling me not to leave a message.

So I tried to phone SNEE ICB, who did answer the phone but immediately put me through to PALS, who have a recorded announcement to say that they're not going to answer the phone either.

At least the lot in Lowestoft did answer the phone eventually, even if they didn't do much else.
 
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