Desperate to hear of others experience of referral to the ME/CFS clinic in Liverpool.

Brain and nerves
1

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

2

Hi there,

so sorry you have had a horrendously rough time.

My experience lately is that receptionist are incredibly rude individuals on the whole. This never used to be the case.  Maybe just a consequence to the NHS cut backs.

M.E. is worse than words can describe  but dealing with people is even worse than that.  But this is their problem.  Not easy I know.  It just reflects their hearts and NOT your heart.  Try not to let their crap land on you - I know it's not easy.  But don't let them reduce you to their standards - you are worth SO much more.

Keep on hanging in there, have a hug!

3

I am so sorry to hear of your bad experience. I am replying as I had a very bad experience at the York M.E. clinic. I did manage to get through the door three times, but really wish i hadn't. These three times were for an assesment with an occupatioanl threapist in view to joining the sessions you mentioned. The girl was useless an patronising and totally demoralised me, like you I was expecting help and understanding. I came away in tears each time. I was hoping it would get better that is why I kept going back (She made a mistake as well about the time and date of one of our meetings and made out that I was the one who made the mistake) In the end I stopped going and compkained to the boss. She did send an apology letter, but what good is that I will never ever set foot in that place again and it caused me damage and more stress which made my M.E. even worse.

The O.T. also sent a letter to my doctor without my permission with 14 mistakes in it and 2 thgings I did not want disclosing to my doctor. This was all between May and Septemeber last year and I am still shaking thinking about it.

She was useless, where on earth do they get these people from.

I don't want to put you off. I managed to get over this episode, but it took some doing and like you just feel as if I can't go on with this horrible desease, but I do I alway try and be positive and think of the family, the only thing is they don't understand. All my friends now don't understand. I say now because my one good friend Anne who died of cancer last October, was the only one who seemed to understand. I miss her an awfull lot.

The letter I mentioned abve with the mistakes in etc. had to be dealt with which took at least two months. My doctor would not take it off the system as it was. I had to get it altered throught the clinic, what a carry on. I really hope they did change it. I asked the receptionist, she said yes, but I don't trust anyone after this experience.

All the best

4

I'm not from there, I'm in the US...I hope someone that went to that clinic responds to you that can help.  I wanted to reach out to you because I can relate to your frustration and feeling of despair.  When I first got sick many years ago, no one believed in it...I was still trying to work and felt awful... I went to so many doc's that told me I had epstein barr and I needed to rest.  Its like patting me on the head and sending me home.  I had no support..my family laughed at me and my then husband yelled at me calling me names.  I thought I was losing my mind..  I was at my end and had no where to turn.  I still didn't know what was wrong with me... all the docs did tests and they all came back normal.  They testing me for AIDS and MS and I actually wish one of them would come back positive, just to put a name on it.  

I don't remember how but along the way someone mentioned CFIDS...and I even laughed at it... I knew I was  tired.  But then I heard there was a support group for it and maybe I should go.  I was so desperate I went.  I heard alot of stories about things that happened to others and thought they were nuts... I knew I was sick but they were crazy. The one thing I learned was there was doc's that could help me.... I went to one and was dx'd.. it was a relief I had a dx and was happy.  Then the hard part...no one believed me!  I tried to keep working but that blew up on me.  After 25 yrs of people rolling their eyes at me, I've learn to walk away..  I stopped trying to convince them how sick I was.   

What I"m saying is if I didn't go to that group I don't know where I would have wound up.  I realized that I had to learn all I could and take care of me... no one else was.  I bought all the books I could and looked everything up on it.  And I've done more for me than any of the doc's even the one that dx'd me.  I don't know anything about the clinic your talking about but, is there any other place you can go?  A doc that you can see?  When I moved, I couldn't afford to live where I was once I stopped working, I interviewed the doc's in the area... I asked them if they believed in this illness and if I got any negative response, I'd leave and go to another.  I found a doc finally that told me he thought there was something to it.. he's been my doc since.  I also know if the clinic's there are anything like they are here, they treat you like your a bum... a bee flying around their head annoying them.   

I hope this helps you.. at least you know, your not alone... and we do understand what your going through.

Bonnie

5

Hi Amber,

Firstly, I attend a different clinic but wish to share experiences and hope they help. My friend and I, both with cfs/me, attend/attended the same clinic. My experience has been friendly staff, one to one therapy face to face with a specialist nurse. My friend has had unfriendly staff, unhelpful one to one telephone therapy and has stopped attending. They have also written to the service to complain. Both our therapists went off sick for several months. Mine through a family bereavement which is totally understandable.

I have felt listened to, understood and have been helped to gain insight into The condition. My friend felt unheard, annoyed by the experience and angered to the point of not attending again. They had a similar experience with physio and I urged them to change therapist and they did. After which they recieved better care. The reason I'm telling you this comparison is because my friend also felt tearful after talking to a receptionist on the phone there and felt them unhelpful.

My advice Amber is that the receptionist, is just that-the receptionist. They will have an idea of what is offered but will have no idea who you will see, what therapy you will be given or when your appointments will be. Its awful that your first call was so negative. Its bad enough having this draining condition as It is. Please, take someone with you to your first appointment. Don't settle for anything less than what feels right for you. I seriously didn't want group work but it was a shorter waiting list I was told.

The first appointment is to assess what is available for you. They will ask you lots of questions and be prepared to be shattered afterwards. The mental is as exhausting as the physical. You are in control. Answer only what you feel is necessary. If you feel you want to see someone higher, ask for that.

Remember, do not be fobbed off.

Hope this helps

Best wishes

Beverley

6

Now you know your not alone in feeling ill and low and having to battle to just get it acknowledged, let alone get any help, there seems to be many having simular experiences, l,m one of them also. Like you the last few months have been really bad feeling tireder fatigued sleepy, weaker, less able to do things, now feel near housebound, been an endurance to just go out on short easy trips, looyds on high st, taxi,s,  with stops to rest, but feeling worse on each return home, lousy in the mornings. Going to gps and getting fobbed off, casual flip attitude,

complained to practise manager, she officious backing up docs, bit sarcy, l back in return, had already put complaint in writing prior to that phone call, ignored till l complained, then offcious but civil response, finally appt made for senior gp, who l knew and quite liked, he was very pleasant but very casual in response to cfs fibromyalgia, agrees on my symptoms but lumps them together, and his attitude, cant do anything about it, so do l need official diagnoses, said yes l do. He did refer me to rheumatolist, got letter for it, picked nearest gp expert, down to journeying affect, then get call and letter saying that one not suitable for me, so another letter for another expert, rang and theyve  no record, so to go through another channel, all the while getting worse, and feeling crap physically and mentally, anxious about how much worse it can get, and how to manage practically being on my own, pets to care for, luckily shops and chemists deliver. It took them many years of my suffering pain  before l got referral scope and diagnoses for intersticial cystitus, which urologist was very good with attitude and treatment, improved symptoms 90percent, thought after that negligence be it many years ago and most of those gps retired now, so new lot, and here l am again. So now its wait in  getting to see rheumatologist, l,m on my own, and dont really mention it to others, small family and most of old friends gone, l think many people never believe affects of any condition unless theyve experienced, but some have the more dramatic startling diagnoses re cancer and with that you do get very good treatment and attitude from meds and people. Doesnt seem the case for such as cfs fibromyalgia, l think maybe more are getting the symptoms and nhs not geared up for it and some are adopting a casual flip dismissive attitude.  A need to battle on when you least feel like it, as everything takes it toll physically and mentally, l bumped into a neighbour and due to not going out less and not liking being isolated so much l like to chat, and we chatted 20min, had a laugh, on walking away l felt off it, drained,needed air outside,  ridiculous, thats how its got increasingly. l will make effort to contact surgery again, also rheumy,but would change surgery to find gp with some empathy. Sorry for what your experiencing and truly empathise, l got email from another health site, healthunlocked, read some stories on there, people also desperate for help, Difficult to believe this can be happening. Keep battling and at them, you could also try contacting pals, patients rep group, the healthunlocked site gives some links to people who might be able to help, official reps to your mp if needs be. Dont give up hope youll get there, and know people on mbs support you. Good Wishesx

7

This is why I went private, my GP told me it would take ages to gothru the NHS. She was great, she did all the tests he would need, so when I went to see him (one of the UK's experts so I had to travel a bit but it was so worth it) he had everything he needed except my case history. 

I sat with him and went through all my problems and at the end he confirmed that I had CFS. It was all done in 1 appointment, cost around £200 I think. He referred me to a nurse for further support but that turned out to be a waste of time and in the end I sorted myself out. 

Personally I wouldn't get too excited about what you may get from the appointment, all I got was confirmation but that was worth it. 

8

Hi wknight, could you let me know the name of the private Dr you consulted and where he is based. 

 

9

Hi, my husband and my family have been helping me to manage my symptoms and I'm very lucky financially that I do not need to work, I was referred to my nearest clinic which is in West Sussex by my doctor as after being subscribed a number or meds I was still having difficulty managing the pain.

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

10

Hi Amber

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

11

Hi Amber

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

12

I agree with has. Things like this happen all the time. It makes being sick even more difficult. Don't let it get you down, just when you have the energy work the problem. Take care of yourself and don't let anybody make you feel less than you are👍👍

13

Hi Amber,

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

14

Seems like we've had similar experiences though you have been offered more than I was a few years ago.

Liz

15

Alistair Miller doesn't have a great reputation. He was/is a big supporter of the PACE trial, a piece of research that has attracted a lot of justifed criticism recently (could google 'Tuller PACE' for some summaries). tbh, I don't think that Miller is very bright.

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.

16

Thank you for your kind response! Xx

17

Thank you x

18

Thank you for getting back to me. It seems the ME clinics across the country are managed in the same way. What a shame! x

19

Hi thank you for your response. I understand completely what you say about hoping a test will come back positive just to have a definitive name and for me something that people recognise and will sympathetise with. I think people in the UK with ME are treated similarly in that they think we're lazy etc. Take care X

20

Thank you Beverley I will try the initial session I have now been offered, although I don't hold out much hope xx