Does any one know anything about the new 'Multidisciplinary clinic
unit' that has been set up at Guys in 2011?
See at
guysandstthomas.nhs.uk/serv...
This seems to be a seperate unit to the one previously run by 'Professor' Davies at the same hospital.
He is the last person I want to see.
I hope the new people can give me some treatment which he didn't.
He operates a two tier system. If you can afford his prices you will be given treatment. If you are NHS, you will have a diagnosis and maybe a bit of advice to take to your doctor, he operates a one stop system, and will not enter into any communication with you or your nhs gp. When questioned about this, Guys vehemenantly deny it. I have had this treatment first hand, so I know what I am talking about. I did manage to get to see someone at Guys again because I wanted to be given different medication, I was given the bums rush. There is no point in your gp referring you. You will gain nothing. This second appointment I had was to shut me up, it was booked with Toby Garrood, but I didnt see him, I saw a woman rheumy. She told me that there are no treatments that I can be given. They only offer alternative if you have the private finance to pay for it.
i experienced the same thing but i did see thomas garrood and i can say he is a none started. did nothing then discharged me. dislike this man from the start, had to wait hours and it so was not worth it.
I believe the new clinic involves the physio and psychology departments as well as rheumatology, so it's not just medications or nothing. I know it's something that Prof Davies and others at Guys have worked towards for many years.
I went to the fibro clinic at guys lindsey, and was offered nothing. I was told that nothing could be done. No other help was even talked about.
I asked my GP if I could be referred there especially to see Prof Davies for Homeopathy...funnily enough I haven't heard back yet. Something to do with authority from the PCT!!! I read a report from a conference about FMS and he seemed like an interesting man!!!
Homeopathy? Prof Davies only uses evidence based treatments and there is no good evidence that homeopathy works beyond placebo (unsurprisingly as the "medications" contain no active ingredients).
I saw Professor Davies several times a few years back and then again recently. I found that his treatment and advice has really helped me. As with so many illnesses, there is trial & error involved. What works for one person may not work for another.
" I read a report from a conference about FMS and he seemed like an interesting man!!!
"
Rach1977 Can you elaborate? I'm interested in what you mean.
I was reffered to him by my GP and he passed it on to a member of the rhumatology department who specialises in lupus and fibro. Dr Garood who I see is fantastic and i am being referred on to the INPUT programme which is residential course run at St Thomas'. teaches you other ways to deal with pain as I have tried all the pain meds and none of them work for me. Will update you as it happens as i will hopefully be able to have internet there!
i michele i went to st thomas input programme for 1 month, but i could not do want there wanted me to do, you stay there from mon till friday you start at 8.30am in the morning one hour lunch time and finish between 4-5pm.there try takeing me off my tablets some people try but went cold turkey. i was in pain and phone down stairs say i was not coming down there came and got me. and took me downstairs, i was crying in pain, and ask me to do some psiotherpy, i did try second week i went home some people think it was a good course me did not help me at all. i take each day has it comes. and go from there. i have fibr/me/ibs/high blood pressure also carpul tunnel sdyrome in both hands.good luck with you stay there.
Hi Michelle,
Did you see Dr Garood on the NHS at the new Multi disciplinary clinic?
No saw him at St Thomas' as a rhumatologist and he has been great. he said the scheme at Guys hospital is aimed predominantly for those outside the area but after i have done the INPUT programme if i still need help i can ask my gp (who is luckily very supportive and understanding) to refer me there and there should be no problems with me attending.
Dear Milly,
You wrote
"He [Professor Davies] operates a two tier system. If you can afford his prices you will be given treatment. If you are NHS, you will have a diagnosis and maybe a bit of advice to take to your doctor, he operates a one stop system, and will not enter into any communication with you or your nhs gp. When questioned about this, Guys vehemenantly deny it. I have had this treatment first hand, so I know what I am talking about. ....There is no point in your gp referring you. You will gain nothing. .......This second appointment I had was to shut me up, it was booked with Toby Garrood, but I didnt see him, I saw a woman rheumy. She told me that there are no treatments that I can be given. They only offer alternative if you have the private finance to pay for it.
"
I had to have a double take on ths I when I read this. I thought it was something I had written!!
I have been saying this for the past 3 years!! I have complained to the Ombudsman and General medical council so far to no avail.
I don't intend to give up. I will be making more complaints with new evidence and I urge others to do the same. I will be talking to my MP.
It seems those who have had private treatment from Davies think this two tiered system is acceptable.
Oh is it? My family have paid into their taxes to support the NHS all their lives! I have paid my taxes as well, when I have been well enough to work.Its a case of I'm ok jack. They say he is a wonderful man! We are not allowed to critise this man. Apperently he has not got the resources to do more - poor soul 
Please I urge every one who has experience this disgusting situation not to be quiet, not to be nonchalant, not to accept your suffering lot but take this greedy man and the system that supports him to task.
We are told he is retiring. Well as long as I am around I will not rest to rectify this sick injustice.This is on my behalf, the vulnerable, the elderly, the poor, the uneducated and unintelligent who the NHS are supposed to help but current get no help.
Btw I am hoping to see Toby Garood. I am still ill and in and in pain believe it or not!
Is he any better?
Adam.
as i said above i have seen dr garood several times over the last couple of years and he has done exhaustive tests and different tablets etc to try and i have found him great.
i found him uninterested and utterly disparaging regarding prof davis work. did not like him.
Toby Garrood also has a private clinic (I had benefited from late prof Davies because he had low fees for people on incapacity) as well as working at the Guys hospital,
Dr Garrood was a waste of my money he doesn't give discounts at his clinic
At Guys he developed a "formula" that should fit us all - big mistake - because in his approach he selected only fm patients that have mild form of fm.
All I can say is this if you don't get well or better his way then you are discharged and they don't want to know why it is not working for you, his is a patronising approach one must fit all!?
Thanks Milly I reply to you in due course.
Hi I can only write about my experience but this FMS clinic through a NHS referral PCT funded was very helpful and have not encountered any issues . I think the advice on medications and support offered really helped me live with FMS and gave my GP helpful input to manage this condition.
i suppose like ToniPR states its trial and error what can work for one maybe not for another. I would still however given my experiences recommend a NHS referral from GP to see the team because it may help or may not. Lets be honest living with FMS is distressing and anything that may provide relief is worth a try.
If it works for you then Great ! if not what have you lost
Hi Mdaisy,
Did you see Prof Davies or Dr Garood?
I'm hoping to still be referered to Dr Garood and I am hoping things will be better and I will be given some attention this time rather than pain killers that don't work. Also No discussion. No questions. No interest.
See, the thing is, I still live in pain all the time. I don't sleep at night.
I am very unhappy!
But it seems I am just supposed to doff my cap and accept my lot..
I am still in constant pain and also do not sleep but at least through Dr Garood I have been able to try different things, but for some of us the meds just don't work.
Hi I saw Dr Choy NHS in rheumatology dept and more recently taken advice from Dr Garood and due to see again in April . I have not been to Guys for a while so maybe I am gonna be seen by this new unit that I was unaware about. When I used to go it was NHS team under Prof Davies .
Think on previous posts we have crossed wires , I have definitely only been a NHS patient and never attended the private clinic. Guys rhematology dept only and seen NHS consultants .
Maybe should have explained fully in original blog to avoid confusion. Hoping others can get funding through GP to get seen by the team at Guys too.
Mdaisy 
Hi Mdaisy,
I would be interested in your positive experience at Guys as an NHS.
Could you provide more detail?
Hi mojo . I found they really understood and willing to advise GP on any issues troubling me could be contacted for help . Changed my meds which helped and offered input clinic Bristol for a month inpatient cbt, physio multidisciplinary team basicially . But after a month or so the meds seemed to be helping so much and mobility was better from bed bound and wheelchair to wheelchair and crutches . I never went to input clinic in the end . One dip in condition since then when b12 dropped to borderline low and my nerve pain increased . GP at first saying it wouldn't have dropped then saying it was not under 200 so didn't need treatment . Contacted guys who told him to treat and nerve pain slowly got better. Therefore I have found the support invaluable and believe the advice aids the GP to treat FMS properly rather than sending you away with prescription after prescription saying let's try this next or I got the classic ' you can't still be in pain on those meds' when u say the things they trying not working . Guys gave me medication combination that GP would never have put together and for me it helped. Still get breakthrough pain and fatigue if I do too much but able to do much more. Getting out of bed and living an adapted life i would say still better than previous times
I do hope even if you can't go there your GP could gain knowledge and advice to help you cope with it x
Hi Mdaisy,
So you were referred to bristol as an inpatient?
You must be refering to this
fmsclinic.co.uk/introductio...
i.e. The London and Bristol Fibromyalgia/ME/CFS Clinics.
Is that not correct?
Hi Michelle,
Its good to hear Dr Garood seems to have the best interests of his patients which is all one can ask really.
Have you or in any one else on here tried Pramipexole, which I know seems to have had success with some patients under Davies's supervision?
Hi again , Yes been only pramiprexole over two yrs helped with fatigue but not so much the pain. However it does in roundabout way because I can do more as fatigue better which means more exercise that in turn helped pain. All the medications I was prescribed are related to the uptake of brain chemicals in this case dopamine . Tramadol is an opiate but apparently this is not what really helps FMS it's the serotonin pathway it takes in the brain . But I do believe pramiprexole helps as does one of my FMS friends from Daily Strength website as I mentioned it to her and she is now working part time for the first time in yrs. Hope this helps
Btw Michelle,
Have you also tried anti depressants?
I used to sleep better with them.
I am not on them at the moment (at least not conventional anti depressants - I have been taking 5 HTP) which I guess is one of the reasons I am suffering so much now.
As regards to Pramipexole in relation to Fibromyalgia its role is outlined here
youtube.com/watch?v=Ei8LbUD...
I know Professor Davies has very close links to Dr Holman who gave this talk.
Hi Mdaisy,
I have put this answer on your othrer thread but I feel I would like to to repeat it here for the benefit of members of this thread.
You are referring to FMS Clinic London. fmsclinic.co.uk/
But unless I'm wrong again this is a private hospital!
Many people can't afford to go private.
I myself last year was unable to find work and living on £65 a week. Out of this I had to pay electricity, gas, water.
Many people have written, not about seeing Professor Davies at this private clinic, but their experience of seeing him under the NHS.
This distinction must be considered in any judgements regarding treatment received.
I just think everyone should be entitled to doctors who care about them.
It seems to me certain doctors and private patients only believe this should be the prerogative of a few.
I agree mojo the postcode lottery or so called is awful . Another thing that goes back to politics again . Dunno what to say about this apart from we must keep on at MP for change . x
I've got a feeling it may be Toby Garrood Lynn.
refering to Mdaisy's points above
So Mdaisy,
you were referred to bristol as an inpatient?
You must be refering to this
i.e. The London and Bristol Fibromyalgia/ME/CFS Clinics.
Is that not correct?
What I'm saying is that this is 'Private' treatment you received here.
Even if you personally did not pay for it yourself, there may have been a unique reason why you got this treatment.
This treatment is not available to most people on the NHS!
As Mdaisy said above, she was referred to the INPUT clinic and other NHS clinics. She has clearly stated that she has not had private treatment.
I am a patient of Professor Davies.. have seen him a few times. Discharged me now because he is only accepting NEW PATIENTS.. what a load of codswallop.. you have to be referred by your GP if national health patient.. he lives just up the road from me yet I had to travel up to that hospital in London and it nearly killed me each time. He gave me Duloxetine and that gave me so many side effects one being sweating.. profusely.. first amytriptiline forgive spelling.. that didn't work either.. nothing works for my fibro.. I am totally disheartened. Last words of *prof Davies* I asked him what my long term prognosis was he said a WHEELCHAIR. ............... sheeezzzzzzz such confidence in the NHS
I take painkillers and gabapentin now for fm.. believe me there is no cure.. just management for fm.. and none of that works either. I was told that we have this resistance to drugs which is why we don't seem to be getting relief..
thoughts??
This is true with opioid painkillers only - people with Fibro do not have as many available opioid receptors as is normal, so these drugs cannot work as effectively in people with Fibro.
I went to see Prof Davies privately several years ago mostly because I wanted a definitive diagnosis of Fibromyalgia. He confirmed that I did have this (trigger points etc) and also referred me to his NHS clinic at Guys. In the following 2 years I had 2 appts both times with a different Doctor. At my last appt last year despite my pain getting much worse, I was told due to funding cuts within the NHS they were not able to contiue with the clinic and discharged me to my GP's care (cos thats always worked out well lol) Now my pain is getting really bad especially my knees and hips.Im intrigued by this thread. Is there infact a clinic at Guys still going. If there is I could possible ask my GP to refer me to it, Any advise gladly received.
Colleen
Diagnosed at Guys in 2012 and then left to my own devices. GP hopeless too.
New hospital
hi guys I'm new!!
Sat waiting at the hospital
THANKS GUYS
Still awake guys :-)
