- Messages
- 20
@Cap413
Well, for what it''s worth, Cap413, i will add in a few comments about the LEEDS services.
I have used the Seacroft Newsam Service Outpatient years ago but had the good fortune at that time to be under the care of Sue Pemberton who headed up the OT side of the service. She is intelligent, follows the reearch, has been to the US & met some of the researchers & understands the nature of ME.
However, most of the rest ( bar a couple) of the outpatient team were less interested in the subject & not well informed about ME/CFS.
The NHS Bacme clinics nationally are all in bed with Action for ME & know very little beyond their training which is currently based on PACE & the need to do graded activity/exercise. From what I know, having talked to many other patients I would NEVER recommend an inpatient stay at the LGI)....
Since the departure of good key staff at the Outpatient service some 4 years ago, the newcomers, all mental health trained except for Dr Vikki McKeever, the specialist GP who does a few sessions there ( did you know she even existed?) are pretty ropey having had no-one decent to train them & they just follow their booklets.
Seeing what was happening @ the clinic I decided to apply to have my care transferred from Leeds to the Yorkshire Fatigue Clinic based in York ( yeah, I know, dreadful name, but great staff) headed up by Sue Pemberton: http://www.yorkshirefatigueclinic.co.uk/
I had to get the GP to apply to the CCG in Leeds to apply for funding to do this. I argued that I did NOT have a mental health condition (BOTH LEEDS SERVICES, INPATIENT & OUTPATIENT are MENTAL HEALTH RUN!) & that I needed to be under a clinic that understood my very physical problems...
I was lucky & got funded first time. Even if I hadn't I should have appealed etc & kept on fighting.
I am severely affected, housebound & often, but not entirely, bedbound. Sue Pemberton makes home visits so I do not need to get to York. She also does, phone, email & Skype sessions as & when relevant. Her clinic is NOT registered as a mental health clinic. NHS England does NOT consider that ME is a mental health conditions although certain parties are fighting for this to be amended. The WHO( world health organisation) classifies ME as a neurological condition.
At NO time, has Sue Pemberton urged me to do graded exercise ( hardly! I can't stand or walk)... but she does help me to try to stabilise my condition, cut down on activity, rest properly & is generally supportive, encouraging & has a whole array of tips as well as useful aids to suggest....eg a wobble cushion to sit on, even in bed, to try to strengthen my back so that I can sit....I do as little as 30 seconds at a time & only build up when stable.....She has a lot of experience with severely affected, bed bound patients.
I would urge you to have a frank discussion with your GP, if you can, & put together a case for having your care transferred to her clinic. Sue is always happy to advise on this if you give her a ring. Your negative & inappropriate care at both arms of the Leeds clinic should give you good leverage. Important to emphasise that your needs are NOT mental health but VERY PHYSICAL.
Unfortunately, some patients with ME do have anxiety and/or depression & find the Leeds clinic more useful in that regard, sadly often giving the staff the impression that ALL ME people have mental health problems & that is what is keeping us ill. This is not helped by the remarks & feedback given by some ME patients. I have lost count of the number of ME patients who have told me over the years that everyone with ME suffers from anxiety or depression or both!......This is untrue but inevitably muddies the waters for ALL patients...I for one have never suffered from either....
Good luck finding a way forward. Do try to get under Sue's clinic. The staff are all good. Joe, who often does the Leeds visits as well as Sue, is very good, understanding & well informed, too.
The only things they are not too good at is NUTRITION.....the NHS dietary guidleines are outdated & unhelpful.
Most of my excellent dietary advice has come from Dr Sarah MYhill & the nutritionists at The Optimum Health Clinic in London. The NHS dietitian I saw was utterly useless......
Hope things start to improve for you soon.
Well, for what it''s worth, Cap413, i will add in a few comments about the LEEDS services.
I have used the Seacroft Newsam Service Outpatient years ago but had the good fortune at that time to be under the care of Sue Pemberton who headed up the OT side of the service. She is intelligent, follows the reearch, has been to the US & met some of the researchers & understands the nature of ME.
However, most of the rest ( bar a couple) of the outpatient team were less interested in the subject & not well informed about ME/CFS.
The NHS Bacme clinics nationally are all in bed with Action for ME & know very little beyond their training which is currently based on PACE & the need to do graded activity/exercise. From what I know, having talked to many other patients I would NEVER recommend an inpatient stay at the LGI)....
Since the departure of good key staff at the Outpatient service some 4 years ago, the newcomers, all mental health trained except for Dr Vikki McKeever, the specialist GP who does a few sessions there ( did you know she even existed?) are pretty ropey having had no-one decent to train them & they just follow their booklets.
Seeing what was happening @ the clinic I decided to apply to have my care transferred from Leeds to the Yorkshire Fatigue Clinic based in York ( yeah, I know, dreadful name, but great staff) headed up by Sue Pemberton: http://www.yorkshirefatigueclinic.co.uk/
I had to get the GP to apply to the CCG in Leeds to apply for funding to do this. I argued that I did NOT have a mental health condition (BOTH LEEDS SERVICES, INPATIENT & OUTPATIENT are MENTAL HEALTH RUN!) & that I needed to be under a clinic that understood my very physical problems...
I was lucky & got funded first time. Even if I hadn't I should have appealed etc & kept on fighting.
I am severely affected, housebound & often, but not entirely, bedbound. Sue Pemberton makes home visits so I do not need to get to York. She also does, phone, email & Skype sessions as & when relevant. Her clinic is NOT registered as a mental health clinic. NHS England does NOT consider that ME is a mental health conditions although certain parties are fighting for this to be amended. The WHO( world health organisation) classifies ME as a neurological condition.
At NO time, has Sue Pemberton urged me to do graded exercise ( hardly! I can't stand or walk)... but she does help me to try to stabilise my condition, cut down on activity, rest properly & is generally supportive, encouraging & has a whole array of tips as well as useful aids to suggest....eg a wobble cushion to sit on, even in bed, to try to strengthen my back so that I can sit....I do as little as 30 seconds at a time & only build up when stable.....She has a lot of experience with severely affected, bed bound patients.
I would urge you to have a frank discussion with your GP, if you can, & put together a case for having your care transferred to her clinic. Sue is always happy to advise on this if you give her a ring. Your negative & inappropriate care at both arms of the Leeds clinic should give you good leverage. Important to emphasise that your needs are NOT mental health but VERY PHYSICAL.
Unfortunately, some patients with ME do have anxiety and/or depression & find the Leeds clinic more useful in that regard, sadly often giving the staff the impression that ALL ME people have mental health problems & that is what is keeping us ill. This is not helped by the remarks & feedback given by some ME patients. I have lost count of the number of ME patients who have told me over the years that everyone with ME suffers from anxiety or depression or both!......This is untrue but inevitably muddies the waters for ALL patients...I for one have never suffered from either....
Good luck finding a way forward. Do try to get under Sue's clinic. The staff are all good. Joe, who often does the Leeds visits as well as Sue, is very good, understanding & well informed, too.
The only things they are not too good at is NUTRITION.....the NHS dietary guidleines are outdated & unhelpful.
Most of my excellent dietary advice has come from Dr Sarah MYhill & the nutritionists at The Optimum Health Clinic in London. The NHS dietitian I saw was utterly useless......
Hope things start to improve for you soon.
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