Desperate to hear of others experience of referral to the ME/CFS clinic in Liverpool.
Posted , 16 users are following.
Hi everyone,
I would be really grateful if anyone could read this and reply please.
After being told continually I have 'post viral fatigue' and feeling like my symptoms were getting worse with no support whatsoever, I asked my GP back in October to refer me to a specialist. She told me she would look into it and then told me I was being referred to a specialist called Dr Alistair Miller at the Royal Liverpool Hospital who would assess me and do more tests and 'leave no stone unturned'.
Since then there have been numerous clerical errors by both my GP surgery and the ME clinic in Liverpool, so I am yet to receive an appointment date. I have also now been told by clerical staff that being referred does not necessarily mean you will see a specialist doctor and that they may just put you straight through to a 'therapy' service which involves group information sessions and group pacing sessions. Perhaps I am being pessimistic but this doesn't sound very useful and is a million miles away from the promise made by my GP that I would see an experienced specialist who would be very thorough and would offer more tests and specialist support.
I was given the number of the clinic by my GP to chase up the appointment so I have rang today to ask if they had any idea when I would get an appointment and whether I would see a doctor. I spoke to a receptionist named Lisa who was so abrupt, unhelpful and aggressive in her tone that I actually burst into tears the moment the call ended. I had this idea in my mind that everyone at the clinic would be so understanding and empathetic due to the nature of the clinic, and that finally I would feel I had the support I needed to get through this. I now feel completely disheartened due to the way in which I've been spoken to, the time it's taken, the errors that have been made and the fact that I probably won't even see a doctor and will merely attend group sessions which seem to me to be a token act for the NHS to claim they are doing something when in actual fact they are as good as useless.
I have felt lower than I ever thought it was humanly possible to feel and to be honest I have wanted to end it all. My one hope that was keeping me going was that I would see a specialist and they would understand and they would be able to help in some way.
I am really desperate to hear about other people's experience with this clinic, please please reply if you have been referred or attended the clinic. I'd like to know what people thought of the service, was it useful, what did it involve, did they see a specialist doctor before going to the 'therapy', was the doctor helpful, did it provide any comfort? I can't bare to tell another person I have ME and have them treat me like something they've trodden in, after speaking to the receptionist at the clinic I'm worried this is representative of the whole service.
Thanks to anyone who's read this x
3 likes, 28 replies
carla21795 amber20574
Posted
After filling out all the relevant paper work sent to me form the Clinic after a 3month wait even though I scored high on the ME symptoms list because I was not on any disability benefits or needing a carer they would not be able to treat me through the NHS!!
I had to laugh really!!
Since then I paid to go private to the Burrswood Hospital in Groombridge and basically I am now on 75mg of amitriptyline to help me sleep and aid pain, I use the hydro pools and hot tubs to help stop pinched nerves due to muscle weakness. and when I'm really in alot of pain Co-codamol is the only thing that works.
I hope you get something sorted but have found that NHS unless you are really lucky is a bit of a waste with our conditions
x
amber20574 carla21795
Posted
mazpaz amber20574
Posted
I'm a year and a bit on from the referral to Liverpool. So far I've only had one group session connected to pacing, following a group introductory session. Both of which I've had before, when I was first diagnosed years ago in the 2000's. I am extremely frustrated with the lack of speed in the process and the waste of funds. I and others I have spoke to, are desperate for the one to one therapy, but that still seems months away. I still need to attend a grading workshop - again something I've had before - before I then join the one to one waiting list. They also said if work won't support pacing, there isn't much more they can do. They supplied a generic letter for my employer, generic because they couldn't be specific as they hadn't met me. They've had a year to meet me! I agree the reception staff aren't exactly friendly or supportive. That said they are very limited in funding and staff. But is it useful? Not as yet, but I am persevering as there is nothing else. I don't want to become another benefits victim, as I know they don't support M.E. sufferers and treat them terribly, as seen first hand through a friend's experience - so what else can I do? The situation in Britain is deplorable for us sufferers and I just hope the people that are responsible can sleep at night!
Sorry to be negative - maybe the experience I've had is more suitable for others that know little about the condition, but having managed it for 15 years I've learnt nothing new - in fact I've learnt more from this site and other links that have been given.
I hope you have a better experience - you have nothing to lose by doing it and you have nothing much else on offer in this region so don't let the rudeness get you down. Accept you have nothing to lose and it may not help much but anything however small may help.
Sending you all the best and keep that chin up!
Paz
amber20574 mazpaz
Posted
Thanks for replying. They have looked at my referral in a meeting with the consultant and decided I definitely have ME and so I won't even be seeing a specialist. The lady who runs the service was very understanding when I requested that this be overturned and she said she will speak with the consultant. It just seems like such a bizarre process, what other life changing condition would be diagnosed from a piece of paper without even meeting the patient and then to send them to a group information session?!
I will go in the hope that maybe it will help although I am doubtful.
Take care X
mazpaz amber20574
Posted
I'm a year and a bit on from the referral to Liverpool. So far I've only had one group session connected to pacing, following a group introductory session. Both of which I've had before, when I was first diagnosed years ago in the 2000's. I am extremely frustrated with the lack of speed in the process and the waste of funds. I and others I have spoke to, are desperate for the one to one therapy, but that still seems months away. I still need to attend a grading workshop - again something I've had before - before I then join the one to one waiting list. They also said if work won't support pacing, there isn't much more they can do. They supplied a generic letter for my employer, generic because they couldn't be specific as they hadn't met me. They've had a year to meet me! I agree the reception staff aren't exactly friendly or supportive. That said they are very limited in funding and staff. But is it useful? Not as yet, but I am persevering as there is nothing else. I don't want to become another benefits victim, as I know they don't support M.E. sufferers and treat them terribly, as seen first hand through a friend's experience - so what else can I do? The situation in Britain is deplorable for us sufferers and I just hope the people that are responsible can sleep at night!
Sorry to be negative - maybe the experience I've had is more suitable for others that know little about the condition, but having managed it for 15 years I've learnt nothing new - in fact I've learnt more from this site and other links that have been given.
I hope you have a better experience - you have nothing to lose by doing it and you have nothing much else on offer in this region so don't let the rudeness get you down. Accept you have nothing to lose and it may not help much but anything however small may help.
Sending you all the best and keep that chin up!
Paz
sueliz57 mazpaz
Posted
Liz
sueliz57 amber20574
Posted
Like Paz I too have been to the Liverpool ME clinic, it was at least 5 years ago now. I've had ME for over 30 years and got the referral through Occy Health writing a letter to my GP.
When I went I first saw a consultant who took medical history etc and as I had been diagnosed many years before by Mr Peto at the John Radcliffe he was happy with the diagnosis. After that I was only offered one half day of a group education/awareness raising session.
It may well be worth while attending if you don't know much about the condition - I finally learnt why I cough a lot when I'm having a bad day, it's because of the adrenalin making me overbreathe apparently.
But apart from that, I didn't really find the session very useful in that they didn't tell me anything I didn't already know and they did not answer my one question about why the condition can improve for many months but always seems to come back. I thought there main focus was in getting people moving again when they first have ME and not when you suffer years from relapsing/remitting.
The staff were, in my opinion, eager to give you all the answers, shall we say, even though they didn't always have any!
A couple of weeks ago I went for a Dr's appointment and asked if anything had moved on since I last went to the ME clinic, she didn't think that it had and said that in many respects it seems like they use it for their research purposes. But as Paz has had a different set of options offered I may well follow this up again.
Good luck with your referral and keep hanging on in there, there are a lot of us out there with similar problems.
Liz
amber20574 sueliz57
Posted
Thanks for your response. I will update on here if anything seems to have moved on. Although I am doubtful.
Take care x
Fidd amber20574
Edited
It's possible that you will get some testing which could reveal something useful, but quite likely not. With post-viral fatigue, and CFS, it seems that no-one really knows what it's best to do about it, so those making money as experts are those who are not willing to be constrained by the evidence. For post-viral fatigue, most do recover, but if you've had it for two years the likelihood of recovery seems to really drop off. Fingers crossed for you, be kind to yourself and make sure that you really realise that it's not your fault that no-one knows what's going on. If people act like this reflects badly on you, they're @rse-holes.
amber20574 Fidd
Posted
Take care x
lauren66668 amber20574
Posted
like yourself I was told by my consultants at Royal Preston I had CFS/ME following sepsis and open spine surgery.
After beginning legal proceedings and PHSO complaints i was referred to Liverpool CFS clinic .
I was told they do nothing with medications that is your GP.
I was told a consultant visits BroadGreen weekly to triage patients.
It has been months. I was told each week a consultant had nit visited and no referrals have been triaged.
I was also told by two other consultants that it does not exist despite new NICE guidelines. Accordingly, I complained. The treatment merely consists if online pacing courses by zoom or a booklet. It us woefully inadequate and ill treated and still dismissed.