United Kingdom - Suffolk and North East Essex ME/CFS services

V.R.T. said:
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.
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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...
 
Suffolkres said:
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...
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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.
 
V.R.T. said:
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.
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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.
 
MEA have highlighted the service on thei Facebook page, claiming credit for their involvement in setting it up.
There are a number of comments re the reality of the service- such as

" I accessed this service following the merger with the long covid service. I've not found it all helpful. The long covid service was amazing, the OT that suppored me was incredible. The new service just fobs you off and talks of discharging you at every appointment. I'm yet to find a clinician at the new service who I believe truly understands this illness and who has a jot of empathy. Really disappointing and just more evidence for patients that clinicians are working in a service with what seems to be very little to no specific training or upskilling for this very nuanced illness."

"i was referred to them by my gp, they dignosed me and gave me 6 x 30mins phone calls, that was it."

"My son is under this service. He has had a telephone appointment with a GP and a OT. I’ve asked for medical evidence to help secure ongoing online learning etc but all they can provide is a statement of fact, no consultation letters or anything!
So not much help unfortunately!"

"I waited months for an assessment (Suffolk) following me chasing them for permission to share my information across services. No one seemed to know how to sort the issue. I sent them my questionnaire several months later they informed me I hadn't sent It! It was totally chaotic and not in line with anyone who has ME/CFS. Since receiving my questionnaire I had a telephone consultation in Early February. Was told my courses would start end of February. I've heard nothing! My statement of fact (issued Feb on day of appointment )
I couldn't download in time before the security code expired. I finally got that from my GP after contacting services several times thereafter. None of which is ideal, constantly chasing for things impacts function and the stress this causes makes my symptoms worse."

"It’s brilliant! I couldn’t manage without my ME consultant from this service"
 
Amw66 said:
MEA have highlighted the service on thei Facebook page, claiming credit for their involvement in setting it up.
There are a number of comments re the reality of the service- such as

" I accessed this service following the merger with the long covid service. I've not found it all helpful. The long covid service was amazing, the OT that suppored me was incredible. The new service just fobs you off and talks of discharging you at every appointment. I'm yet to find a clinician at the new service who I believe truly understands this illness and who has a jot of empathy. Really disappointing and just more evidence for patients that clinicians are working in a service with what seems to be very little to no specific training or upskilling for this very nuanced illness."

"i was referred to them by my gp, they dignosed me and gave me 6 x 30mins phone calls, that was it."

"My son is under this service. He has had a telephone appointment with a GP and a OT. I’ve asked for medical evidence to help secure ongoing online learning etc but all they can provide is a statement of fact, no consultation letters or anything!
So not much help unfortunately!"

"I waited months for an assessment (Suffolk) following me chasing them for permission to share my information across services. No one seemed to know how to sort the issue. I sent them my questionnaire several months later they informed me I hadn't sent It! It was totally chaotic and not in line with anyone who has ME/CFS. Since receiving my questionnaire I had a telephone consultation in Early February. Was told my courses would start end of February. I've heard nothing! My statement of fact (issued Feb on day of appointment )
I couldn't download in time before the security code expired. I finally got that from my GP after contacting services several times thereafter. None of which is ideal, constantly chasing for things impacts function and the stress this causes makes my symptoms worse."

"It’s brilliant! I couldn’t manage without my ME consultant from this service"
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All I've been offered so far is a uselesss group fatigue course. When I said no they put me on 6 monthly review. Very disappointed.

i plan to ask for an appointment with Nacul. We'll see what they say when I get around to it.
 
Suffice to say, there are 'teething problems' and legacy burdens here in Suffolk Service with GP Fed delivery.
The ICB Long Terms Conditions team, post September 2024- have been decidedly tricky to us and to GPFed.

There were redundancy and TUPE issues..Still are!
Plus, the ICB pulled a fast one over 16-18 year olds.
We are disappointed at the feedback, but not surprised.
We hope over time, we can steer this where it needs to go.
With NHS England revealing just how disinterested and disfunctional they are... have been... will be.....
Quite honestly, they don't give a damn.
Shameful.
 
V.R.T. said:
All I've been offered so far is a uselesss group fatigue course. When I said no they put me on 6 monthly review. Very disappointed.

i plan to ask for an appointment with Nacul. We'll see what they say when I get around to it.
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I said no to the useless group fatigue course too, and got an equally useless phone call with a nurse. However this went badly enough that I was given a phone appointment with Nacul.

He was as helpful as he could be, given that there isn't actually any treatment. And after the call I kept thinking to myself 'that was a bit weird'. Took me a while to put my finger on what was weird - the complete absence of scepticism in his voice. I told him my symptoms and he just accepted them.
 
Frith said:
I said no to the useless group fatigue course too, and got an equally useless phone call with a nurse. However this went badly enough that I was given a phone appointment with Nacul.

He was as helpful as he could be, given that there isn't actually any treatment. And after the call I kept thinking to myself 'that was a bit weird'. Took me a while to put my finger on what was weird - the complete absence of scepticism in his voice. I told him my symptoms and he just accepted them.
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Give Dr Nacul time.... If anyone can turn the ship round, he can!
He did in 2018-2019 in Suffolk for those abandonned by ECCH with a great commissioning CCG lead.
 
V.R.T. said:
All I've been offered so far is a uselesss group fatigue course. When I said no they put me on 6 monthly review. Very disappointed.

i plan to ask for an appointment with Nacul. We'll see what they say when I get around to it.
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Update, today I got a letter saying I'm being discharged. F-king fuming, to be honest. Need to wait til I've calmed down to call them up about it!
 
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V.R.T. said:
This is what I need and I don't understand why it's being treated like a hidden menu item a McDonald's! I have severe ME. He is an ME specialist attached to my local MECFS service. Why haven't I been offered an appointment with him?
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Can I let my patient rep contact aware of this please?
Anon of course.
I have heard they are progressing a patient support group.(but it will be do ot yourselves... ) also. I am aware a service board was referenced.
 
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