UK - St George Healthcare - Inpatient Rehab Severe Patients - Chester?

[Firestormm]

Has anyone received a referral to this service? Interesting use of assessment and outcome measures that I had not seen publicised before. Have a look at the website - seems to cater for a large variety of conditions - although this service is specific for CFS/ME.

Chronic Fatigue Syndrome Specialist Rehab Programme

Input of different disciplines during admission
This is an estimate of the expected input from our clinical team:

• Medical review: Three times a week>
• Consultant ward round: once a week
• Occupational therapy: once a day
• Physiotherapy: once a day
• Psychology: twice a week
• Assistant therapist: 4 times a day
• Dietetics: once a week

Indicators of effectiveness and service monitoring
The following outcome measures will be evaluated on admission, 6 weekly and on discharge:

• General activity measures: Functional Independence Measure (FIM) Barthel Score
• Chalder Fatigue score
• Hospital Anxiety and Depression Score (HAD)
• SF-36 Health Survey Physical Functioning Section
• Patients questionnaire

The service is not free or part of the NHS I don't think - though perhaps referral might be I don't know.

I would be interested in hearing from former patients or their families with a view to perhaps writing something by way of an article. Inpatient services are very rare - there is either nothing for severe patients or only home visits if you are lucky. You can contact me via the forums (send a PM) or by email: russell@phoenixrising.me Thanks

 

[MeSci]

Seems to be just another 'service' based on 'challenging negative beliefs' and increasing activity. Also claims to reduce hypersensitivity to noise, smell, etc. through gradually increasing exposure to them, despite evidence that the problems are neurological, not psychological.



BS, basically.

 

[peggy-sue]

Direct quote from the site;-

"Strategies such as pacing, distraction, challenging negative beliefs and discouraging harmful behaviours are implemented and reinforced by all members of the clinical team."

Pah.

And cost "on assessment".

More Pah.

 

[Firestormm]

Seems to be just another 'service' based on 'challenging negative beliefs' and increasing activity. Also claims to reduce hypersensitivity to noise, smell, etc. through gradually increasing exposure to them, despite evidence that the problems are neurological, not psychological.



BS, basically.

Not challenging you MeSci - but it's how I overcame the worst parts of hypersensitivity at least. My experience of that part of it was awful for me and wholly unexpected but - as with increasing activity - I did it very gradually with help from my parents (no professional support was available). That was following my last proper relapse in 2009 I think it was and took a long time but once the basics seemed to be working - slowly - I kept on with it. Trouble was - for me - dealing with the setbacks and not getting despondent. I found that a real challenge.

With regard to hypersensitivity at least I think I have come a long way, and with regard to activity management I think that too has helped a lot. But all these strategies have not resulted in recovery by any means and (now the specialists have become involved) they agree. Becoming more able to manage and to cope with a chronic illness doesn't take anything away from the illness itself i.e. whether or not the issues stem from it being neurological or otherwise. I feel I have improved - especially with regard to sensitivities to light and noise - improved not recovered and I am subject of course to fluctuations as well as to possible further relapses.

But the point of posting about the service was really to see what you all thought about them using measures to determine progress and outcome. I had not heard of any service actually promoting this before, and wondered if anyone had used this service and might like to comment. I'd also be interested in hearing from former patients or their families with a view to perhaps writing something by way of an article. Inpatient services are very rare - there is either nothing for severe patients or only home visits if you are lucky.

Anyway, I posted some comment to the person who alerted me to this service, on Facebook: HERE. Sorry but things crossed and I forgot to include above.

 

[maryb]

Ridiculous to think you can reduce noise sensitivity in ME patients by desensitization, absolutely.
I had this to the extreme some years ago -just being in a hospital environment would have killed me at that time, never mind desensitization.
Mine is much better now but I still have a problem with noise, the acuteness when it is bad has to be experienced to be believed.
The sooner we are rid of these places the better, sorry if that upsets some people.....
Roll on the results of proper research leading to proper treatment for us, we won't give this rubbish the time of day then.

 

[peggy-sue]

The whole point of your posting this was about the fact that outcome measures are actually made, wasn't it, Russ?
Not that it is just a.n.other load of psychobabble (which it would appear to be).

Have they got or published any results, or made them available anywhere?

 

[Snowdrop]

The Chalder Fatigue Score
What a wonderful phrase
The chalder fatigue score
Ain't no passing craze
It means no worries
for the rest of your days
it's their problem free
philosophy
the chalder fatigue score
​

Hakuna Matata.

 

[Min]

NHS or not it is very worrying that the severely affected are being targeted with this tired old, potentially harnful, psychobabble with no one ever trying to find out what is physically wrong with them

 

[Firestormm]

The whole point of your posting this was about the fact that outcome measures are actually made, wasn't it, Russ?
Not that it is just a.n.other load of psychobabble (which it would appear to be).

Have they got or published any results, or made them available anywhere?

Yeah. It was what sttod out for me when reading throuh the website. Be especialy interesting to hear from anyone who had been there to what extent these measures - and maybe others - were taken on board when assessing effectiveness, as well of course, the extent to which the time spent in the hospital was felt to be beneficial. As I said from elsewhere on the website they seem to cater for a range of conditions, and inpartinet services for severe ME is/are rare. Be useful to hear from someone who might have been - even/especiallialy if it wasn't/or was a helpful experience for them personally.