(Not a recommendation) [UK] National Inpatient Centre for Psychological Medicine (NICPM)

https://www.leedsandyorkpft.nhs.uk/our-services/services-list/nicpm/

I can only guess at the damage they will have caused if they got their hands on anybody with severe ME.

 

Since when did care become 'biopsychosocial'? I suppose it consists of a real human nurse giving you a pill with the deeply comforting words ' time for your morning dose, Jack'. The whole prospectus is just a mouthing of meaningless gibberish.

 

Misread this as "impatient care" at first ... maybe it's a typo.

 

Man, this is scary stuff. I wonder what this is:

This is ominous. What sort of "psychological problems" could possibly be addressed by short term residential care? Is this people who won't take their meds or something, and who are sent to a ward where they are "dealt with"?

It sounds suspiciously like it is.

 

I have had severe ME for 14 years now. Although since the start of the year I have come on leaps and bounds and finally starting to get my life back.

This is due solely to an eight month stay in Leeds General Infmary on ward NICPM. This ward has been heavily criticised on forums on this website but I cannot sing their praises enough.

If you go to their website and look at patients review about it you will find more information about my stay. I am patient E (legally they have to keep personal details private).

They have put me on medication which is dealing with the physical cause of my illness which is central nervous system over arousal. This helped my symptoms reduce from being acute to bareable. I walked out of that place 70% better.

They are complete experts in dealing with severe M.E and have such vast experience and knowledge about the illness. I literally own them my life as Prior to being referred to the hospital i attempted suicide as life was unbearable. I cannot thank them enough.

 

Welcome to the forum @Tal. I'm glad you've managed to improve, and thanks for coming here to share your experience.

 

I think MEA were canvassing members for opinion on this centre last month
@Russell Fleming ?

 

Thanks for letting me know, I’ll get in touch with them.

 

What was the name of the medication and why did you have to stay there for eight months if all the did was give you medicaton and what tests did they do to diagnose you with 'central nervous system over arousal'?

 

I didn't notice @Tal saying "all they did" ... feels like you are putting words into someone's mouth.

 

Can you give us a link please @Tal.

 

Well he didn't say they did anything else so what did they do as the NICE guidelines says you are only allowed to offer CBT and GET. What the fuck is central nervous system over arousal anyway? Since when was that published and proven as the cause of ME?

 

I was simply pointing out that @Tal did not say what you said she did, and here in S4ME it's legitimate to pick up on that. But I, like you, would nonetheless like to know more.

 

Ditto, and hope you continue to maintain your improvement over the coming months and years.

As included in the initial post here for patient feedback @Tal refers to - under headings "Our carer and patient stories and what makes us proud", and here for link to Leeds CFS/ME service page.

It seems that the average stay is for 8-10 weeks, and I would also like to ask what medications and tests you underwent, and only if you are happy to share such information.

Likewise, am intrigued by the diagnosis given, and their basis for this finding. Though on reading the primary care leaflet, I could make an educated guess, and would not recommend anyone with ME to use their service. It is interesting to note that this 24-page leaflet? was last updated in December 2014.

It also interesting to note that they are using the Fukuda criteria as the basis for their diagnosis of CFS/ME, though there are references to NICE and CG53, I wonder if NICE are aware of this fact? As such the same old story .. core symptoms are physical and mental fatigue, and the outcomes submitted to the NOD would seem to be based on subjective measures only. I would have to research further on the latter point.

On this basis I would have to respectfully disagree - they are not "complete experts" in dealing with ME.

They may certainly have "vast experience" but they have learned nothing about the illness ME, as they are completely incapable of understanding ME outside of the confines of 'fatigue' and 'mental health'. From the up to date info on the site that I have read, absolutely nothing has changed in their treatment(s) of choice, since I last used the service, as an outpatient in 2012.

Wishing everyone improved health and every happiness. John

 

@JohnM thanks for producing that post. As I suspected and not a surprise. Thank you.

 

Having read the patient accounts, I suspect the staff are actually very good at dealing with some things ... but likely not ME.

 

Its obvious they are good at not knowing the difference between ME and other things and claiming success in treating ME whilst telling some people they have or had ME. Anyone who doesnt recover from ME presumably isnt trying hard enough or doing the right thing.

 

Good lad. I'm ashamed to see this is in my home town.

 

We didn't actually hear from anyone who had experience of the inpatient service who was admitted with M.E.

Here's the Facebook thread:


You might want to speak with Simon Ounsley or Chris Oy as they are involved with the Leeds support group, and might be able to help. They both commented on the Facebook thread.

 

This was the conclusion I came to when reading the patient stories. I think they probably do really help people with some conditions, possibly misdiagnosed as ME, especially after hearing from @Tal who comes across as very sincere and having been through a very traumatic experience - and very deserving of our understanding here in S4ME. But none of the patient stories sounded like ME to me. And I have to say, in all honesty, none of the people I have encountered with ME cite pains, headaches, etc, as their primary symptoms ... far more likely to be extreme exhaustion, PEM, etc. Yes, lots of pain as well, but secondary not primary ... though others can obviously correct me if I'm wrong.