Leeds ME/CFS clinic (UK)

[Esperanza]

@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.

 

[Esperanza]

@katiecupcake

I think one of the mistakes people can make when talking about the clinics or doctors etc is to assume that everyone is like you.

As I have said previously I have never had anxiety or depression with my ME & do not wish to be categorised as a mental health patient when my problems are so overtly physical.

I have had cancer a couple of times & been lucky as the Leeds Cancer Service was mostly great & surgery cured both unrelated cancers.....

However, the fact that I had ME & was at that time under the care of the Leeds ME Outpatient service, run by entirely mental health staff ( yes, Katie all the CFS/ME clinic staff are mental health trained except for specialist GP, Vikki McKeever who does a few odd sessions), was poorly understood when I was on the Oncology ward.

My notes were clearly full of mental health nonsense & psychobabble & the Staff on the cancer ward did not understand my ME/ my physical disabilities etc.
They kept asking me why I was under the care of Mental health ( indeed! Why??....!) as I was so obviously physically ill...& showed no sign of psychological distress....

When I replied that my cancers had given me no trouble at all, other than needing to be in hospital for surgery but that it was my severe ME that was ruining my life.....they looked utterly baffled.

As soon as I was able to, post-discharge, I moved from the Leeds ME/CFS service to the Yorkshire Fatigue clinic, which is NOT registered under mental health...see post above.

You also seem to make the assumption that everyone has good treatment at the Leeds service just because it is meeting YOUR needs or addressing YOUR issues..... fair enough, it can be what we all tend to do to some extent but you need to be aware of this.

Most of the Leeds clinic have NOT been there for 20years...I suspect you are under the care of SS & LP, two of those who were trained up by Sue Pemberton way back when ie many years ago. How do I know this? Well, I have known Sue Pemberton for almost 20 years & was a patient advicate at the clinic for years trying to improve things for patients, many of whom did not have the good experience you recount.

I sincerely hope that your health improves but please be aware that things are NOT the same for everybody....
Good luck moving forward.

 

[Cap413]

@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.

Hello Esperanza

Thank you so much for your reply. I'm really glad that you're having a positive experience at the Yorkshire Fatigue Clinic.... it sounds exactly what I need and your current health sounds an awful lot like where I currently am so perhaps that's the best route for me. I did see the YFC when googling but I had the awful feeling I would expend energy with a referral and get my hopes up only for them to tell me I should be at the Newsam Centre instead, but everything you have said is very positive so I shall speak to my GP next week and start a referral. I luckily have a good GP that whilst not knowing an awful lot about CFS he is ready and willing to support me in whatever I need, which does mean so much. How long did you have to wait for home visits.... was it a long wait?

Thank you for the info about the Specialist GP at the Newsam Centre - No I did not know that!! But of course, they don't freely give you information anymore do they, all I've been told is that they have various OT's and a Physio. Which is not strictly true then. I also saw a dietician at YCPM who was absolutely useless. She was a very petty woman and started arguing with me about the fact that chicken isn't technically meat it's poultry... good lord.

I agree whole heartedly that it isn't a mental health condition. Of course, having this condition can give rise to a number of mental health issues, (social anxiety for me is a big one now but CBT can help with this) or some people may suffer with mental health conditions that may exacerbate the symptoms of CFS/ME but that in itself isn't a cause. I think the issue is that it's too easy to treat everybody the same way and that was one of the issues I experienced on the ward that treatment was not bespoke at all. They treated you at face value never bothering to look to the source of things. I'm sure I saw on this thread that there used to be an immunologist at the Newsam Centre? Boy wouldn't that be so good to have access to? I thought that the YCPM would have that but unfortunately not.

Thanks again.

 

[potbatch]

Action for ME are not well regarded by some for good reason. AfME continue to give money and support to people who treat ME as psychologically perpetuated.

Graded exercise however it is done can be harmful to all but perhaps a few with mild ME symptomatology. There is increasingly compelling research evidence that the problem is one of inability to produce energy at the cellular level. The whole idea behind graded exercise is that the person is deconditioned and GET can help build up strength and stamina. This is not the primary problem for people with ME.

I agree totally with what you say, Snowdrop. Just to clarify: over the years, the Leeds outpatient clinic have not bought in to the deconditioning theory of ME. The focus has been on helping patients get out of the cycle of 'boom and slump' by teaching something which is very similar to what we patients call 'pacing' though they confusingly called it grading. Crucially it has been about graded *activity* rather than exercise as they recognised that patients were challenged by simply carrying out the activities of everyday life without adding in additional exercise for the sake of it. In recent years, since the departure of many of their most experienced staff, the clinic seems to have taken a turn for the worse though it's been hard for us in the local ME support group to keep up in touch with what's going on. The clinic fell out with us because we complained about their reorganisation so they rarely send patients our way these days and we rarely get feedback. That's why it was so helpful to hear from Cap413, though it's sad that she's had such a bad experience with them. From what you say, Cap413, our worst fears about the way the service is going seem to be justified. It's interesting that your OT 'tells you' to start grading up. If it's being done properly, that should be for you, the patient, to decide. It's hard to know whether they've changed their philosophy or the individual therapists, who will be mainly from a mental health background, are just making it up as they go along. Either way, it's not good. I wouldn't want to go back there myself.

My above comments are on the outpatient service. Most of the feedback we've had on the inpatient service has been bad all along.

 

[Esperanza]

@Cap413 Good luck getting a referral to the YFC. You will need to make your case for this vis a vis the CCG as the default sytem is to send you to the Newsam Centre @ Seacroft if you live in Leeds.
Might depend on which part of Leeds you live in ...
There is virtually no waiting list for home visits. Sue comes out on Mondays & Joe on Wednesdays....
You can get a referral direct to Dr Phil Wood at St James's: http://www.leedsth.nhs.uk/consultants/dr-philip-wood

He is good for getting a diagnosis but little else in terms of treatment. He is not entirely happy with the Newsam Centre set up to put it mildly but is unable to say that...I think he was rapped over the knuckles for suggesting patients go to the YFC instead a while ago...FFS! ....

I have other health problems beside ME including cancers & allergies with anaphylaxis so I have had more of a work up through the Immunology Clinic. I haven't found him particularly interested in or informed about severe ME. Sue Pemberton & Joe Bradley are far better for that. I have been told that he is not paid to do his CFS clinic, he does it to offer a service he feels is distinctly lacking in Leeds....his main interest is in cancer.....as well as allergy.

The Leeds ME Network group is a very useful source of information & news....do take a look. I think someone has posted the website above somewhere.

It is very dangerous to go down or buy into the psych route with physical ME....roll on a time when there are proper biomarkers & treatments etc. I( I shouldn't even have to use a riduculous term like physical ME..) That way those whose primary problems may require mental health input can get it & those of us who need immune modulating therapies can get them without being lumped in as mental health.

Btw there are some very good Fb ME groups where you can discuss all things ME...

Good luck moving forward

 

[wastwater]

Newcastle and upcoming Norwich and maybe Cambridge are places for me/cfs that I see as having worth

 

[Snowdrop]

The info Sue Pemberton provides sounds very useful. It would be great if those kinds of tips were generally available without needing an in person appointment although I understand that having a face to face can offer additional help in tailoring and adjusting aids for the individual.

If not connected to a larger international community such as here at PR it is difficult for people with ME in the UK and elsewhere to get good information as to what is really known about ME. I know you are looking for specific help in your area and I hope you find it.
Meanwhile here is some info on the latest physical findings in ME research:
http://www.pnas.org/content/113/37/E5472.full
https://app.secure.griffith.edu.au/...n-the-fight-against-chronic-fatigue-syndrome/

Hopefully there will be some people who work with people with ME who will be willing to consider this even if there is no systemic change imminent in the near future.

 

[Esperanza]

@Cap413 the ME Association produce a very useful 'purple booklet' about ME which includes research summaries & medications that can be useful in ME ie symptomatic treatments. The booklet is alao very useful to show friends, family & GPs that ME is a serious physical condition that should be taken seriously...
You can but it Online or by phone http://www.meassociation.org.uk/shop/books/
Well worth buying.

 

[Cap413]

@Cap413 Good luck getting a referral to the YFC. You will need to make your case for this vis a vis the CCG as the default sytem is to send you to the Newsam Centre @ Seacroft if you live in Leeds.
Might depend on which part of Leeds you live in ...
There is virtually no waiting list for home visits. Sue comes out on Mondays & Joe on Wednesdays....
You can get a referral direct to Dr Phil Wood at St James's: http://www.leedsth.nhs.uk/consultants/dr-philip-wood

He is good for getting a diagnosis but little else in terms of treatment. He is not entirely happy with the Newsam Centre set up to put it mildly but is unable to say that...I think he was rapped over the knuckles for suggesting patients go to the YFC instead a while ago...FFS! ....

I have other health problems beside ME including cancers & allergies with anaphylaxis so I have had more of a work up through the Immunology Clinic. I haven't found him particularly interested in or informed about severe ME. Sue Pemberton & Joe Bradley are far better for that. I have been told that he is not paid to do his CFS clinic, he does it to offer a service he feels is distinctly lacking in Leeds....his main interest is in cancer.....as well as allergy.

The Leeds ME Network group is a very useful source of information & news....do take a look. I think someone has posted the website above somewhere.

It is very dangerous to go down or buy into the psych route with physical ME....roll on a time when there are proper biomarkers & treatments etc. I( I shouldn't even have to use a riduculous term like physical ME..) That way those whose primary problems may require mental health input can get it & those of us who need immune modulating therapies can get them without being lumped in as mental health.

Btw there are some very good Fb ME groups where you can discuss all things ME...

Good luck moving forward

Hi Esperanza

Sorry for the delay, you gave me a lot to think about and I've had a couple of hospital appointments, social care appointments and mandatory resting. Can I just say in one day speaking to you and your husband I have learnt more about what I can access in Leeds than I have in the last year and a half relying on the knowledge of my GP, the Newsam Centre and YCPM. So thank you both very much, your advice is invaluable.

I will speak to my GP when he's next in and get a referral to the Immunologist. I like the sound of him even more knowing that he doesn't rate the Newsam Centre I just clicked on the link for him at St. James and it clearly states one of his specialities is CFS/ME so it's crazy that there isn't a linked up service for GP's to search for these consultants....

I've heard about the Facebook groups, I'll take a look. I was always reluctant to post about CFS in a Facebook group as I wasn't sure if what I posted could be viewed by everyone on my friends list. But I guess that depends on the privacy settings of the group.

Thanks again.

 

[Cap413]

The info Sue Pemberton provides sounds very useful. It would be great if those kinds of tips were generally available without needing an in person appointment although I understand that having a face to face can offer additional help in tailoring and adjusting aids for the individual.

If not connected to a larger international community such as here at PR it is difficult for people with ME in the UK and elsewhere to get good information as to what is really known about ME. I know you are looking for specific help in your area and I hope you find it.
Meanwhile here is some info on the latest physical findings in ME research:
http://www.pnas.org/content/113/37/E5472.full
https://app.secure.griffith.edu.au/...n-the-fight-against-chronic-fatigue-syndrome/

Hopefully there will be some people who work with people with ME who will be willing to consider this even if there is no systemic change imminent in the near future.

Thank you. This is all very useful to know.

 

[wastwater]

I've been thinking of visiting the fatigue centre but still not sure,I suppose it's one of the few places in Yorkshire that has any idea of me/cfs
I still can't work out what there ethos is
Why arnt they more involved with sites like PR
Will they fall off there seat if you start speaking about rituximab and the latest studies

 

[Esperanza]

I've been thinking of visiting the fatigue centre but still not sure,I suppose it's one of the few places in Yorkshire that has any idea of me/cfs
I still can't work out what there ethos is
Why arnt they more involved with sites like PR
Will they fall off there seat if you start speaking about rituximab and the latest studies

Not sure if you are talking about the Yorkshire Fatigue Clinic...?
The staff will be very aware of Rituximab but they do not as yet provide medical treatments for ME.
What they do provide is individualised condition management & support.
I am quite sure Sue Pemberton who runs the clinic will be aware of PR. In fact, I think I have mentioned the site to her.
They see the whole spectrum of ME from very mild to very severe & try hard to be creative & suggest things to help.
They DO NOT DO graded exercise or CBT. It is all very practical, supportive stuff, including liaising with GPs, Soc Services, providing letters for DWP & educating other HCPs who may be involved with the patient about the nature of ME.

 

[Maria1]

http://www.yorkshirefatigueclinic.co.uk/step-programme

 

[Esperanza]

http://www.yorkshirefatigueclinic.co.uk/step-programme

I assure you this is NOT about exercise despite the misleading name, if that is what you were wondering.

It is about finding your baseline to stabilise whatever level of health you have.
In my case, being severely affected, this means doing the absolute minimum & getting carers & help in to look after me...

 

[Valentijn]

I assure you this is NOT about exercise despite the misleading name, if that is what you were wondering.

So exactly how do the steps for "Building Tolerance", "Enhancing Employment", and "Planning Progression" happen without increasing activity?

The STEP Programme focuses on helping you to understand the things that can affect your symptoms. It then takes you through stages of stabilising and gradually increasing energy and activity levels. A qualified therapist will assess your needs and how you can use the programme to optimise your recovery.

Sounds like a bunch of bullshit quackery to me.

 

[Chrisb]

gradually increasing energy and activity levels

Sounds like they are making use of ambiguity of the word "energy" to say one thing and suggest another. Where is this increased energy to come from? It is probably unintentional.

 

[Hajnalka]

Therapy is individualised to each persons’ needs and utilises evidence around how to change the way that energy is used on a daily basis to help regulate internal physiological processes. The therapy follows stages that aim to stabilise symptoms, then increase tolerance of activity and re-integrate daily life roles, such as going to work or school.

 

[ukxmrv]

Wasn't Sue Pemberton one of the people behind the NICE guidelines?

 

[Hajnalka]

If you have had symptoms for over three months then specialist assessment and treatment needs to then be considered (as specified in the NICE Guidelines for CFS/ME).

So people get diagnosed with ME after 3 months of unexplained symptoms? They seem to produce a lot of false ME diagnoses that they then can often successfully cure with graded activity.
Still super envious that ME is diagnosed at all in the UK (just too often it seems).

 

[wastwater]

lol three months,they should wait about two years ,Ive been waiting for 22 years and have to prove it exists.