Do I have any rights to refuse ceasing diazepam?

Treatment and medication
1

I have been on it for 17 years and the dose is 20mg, I started out on a much lower dose which was gradually increased for the first 10 years, I held at 18mg for 7 years then it was increased by 2mg about 6 months ago.

Anyway I will get to the point, for the past 8 months my anxiety and agoraphobia have been horrific, I did get a bit better which took a few months of me applying coping techniques and exposure therapy but in the past few weeks have had a huge relapse again.

I contacted the mental health team and they sent a CPN to assess me at home, the CPN said I need to see a consultant, fine if I an get there because he refuses to come here, anyway the CPN said the consultant will want to take me off the diazepam.

I asked what kind of taper plans and support I might expect and was told that generally they look at reducing it by 2mg per week, I am horrified by this, I have done enough research to know that it is not safe to go that fast.

Now don't get me wrong I know it's a bad long term drug and can cause a lot of problems but I do not feel safe in the hands of any doctor who withdraws patients that quickly and I also do not feel that I am stable enough to start a taper at this point in time, I am so unwell and not only that but my mother died recently so I am trying to cope with the shock of that too, the last thing I need is another problem.

Can I refuse to reduce at this point in time? My gp has always said she would never force me to reduce, it would be when I was ready and at my pace, she also thinks it is a bad time to do it but as I understand it the psychiatrist is above her and can make a final decision unless I am mistaken.

Right now even if I can make it to this appointment I don't want to go because I am terrified of being made to withdraw in this state and especially at that pace, there was literally no support from them for the current problems I am having ,I was trying to ask about other help like therapies but they just kept saying 'yes well you see the consultant and he'll want you off the diazepam'

I don't think it is right that I get no say, I have young children too who are on the 6 week school holidays and that is another reason I don't want to go through withdrawal at the moment, it's bad enough being ill in front of them without that.

I think at the moment I will just not go, the CPN is coming back on Sunday though so will be pressuring me again, I just wondered if I actually have any rights to insist I have a say in this matter, does anyone know? I'm in the UK btw, Thanks.

 

2

Bella, i don't know about the UK, or what you can do..but...there is someone in the UK, a nurse who is very knowledgeable. especially about drugs and usages.  Her name is Tess. I know she is not available for about a day. I will private message her to look at your post. That's the best I can do.

You may get other replies with ideas, also. Hang in there...we will do the best we can. Hugs

3

Thank you so much cia, I really appreciate that, I am already terrified what with everything that is going on with the anxiety and agoraphobia so the prospect of diazepam withdrawal is just too much to take at the moment.

4

I get it, Bella, i really do. I have come off a benzo...my choice...and I took it slow, about four months. As I said, drugs are not my area, but here in the US, it would be more likely that if  a doctor really felt a drug wasn't doing the job anymore, one would be switched over to something else.

Two milligrams a week seems extremely fast to me. Especially after all those years. We'll see what Tess has to say. Have some chamomile tea...it soothes wonderfully.

 

5

Hi .. in my experience once your under pdr your gp can't decide on your meds.. the gp takes instructions from the pdr. I wish I hadn't been referred to a pdr ..just so cruel & heartless. I read on here about tapering off meds I'd never heard of it before ..didn't have a clue what it ment.. then the pdr told me just to come straight off mirtazapine & I should of instead of waiting for my appointment. . Even my gp was shocked by this .. I was then put on zopiclone because of the side effects still cnt sleep.. alot on here do it themselves. .what they feel comfortable with..by just shaving bits off the pill..

6

Hi Bella

i would visit or. Talk it through with a telephone appt with your GP. The GP should then write to the consultant with your concerns. You can of course discharge yourself from the care of the consultant.

when and if you get to a point of coming off the diazepam do it on a 10% per month reduction taper.

i take clonazepam and expect to be on it for life due to my condition being incurable. However I was also on sertraline for 2.5 years and when I decided to come off it I did it myself over 7 months and avoided any withdrawals. If I had taken the advice from the medics I would have come off it over two weeks !!

its shocking how they underestimate the damage that can be done to the nervous system by withdrawing so abruptly.

go by your own instincts if the time isn't right then don't do it. It is your mind and body, you can take control,

good luck x

7

I am in the UK. I would hope that the psychiatrist would discuss the options with you, take your views and circumstances into account. I would expect that. Take a copy of the Ashton manual with you. The NICE guidlines on benzo withdrawal also if in England. I am in Scotland. Your GP is on your side, has the right approach, that is really important. I would try not to worry but go to see psychiatrist armed with relevant information. I hope it goes okay if you do keep the appointment. I don't think we have rights as such but doctors should follow NICE guidelines. You could cite examples of people who have had great difficulty coming off benzos. There are plenty examples on benzobuddies forum.

8

Hi there,

So let's get this sorted out. You can refuse to see any doctor. You do not HAVE to see the psychiatrist.

A fully-trained GP (with MRCGP after their name) is as entitled as any other Consultant to prescribe medication. They are the same grade, medically and legally speaking.

So I would say - you can choose to see the psychiatrist (I personally wouldn't if I was having so much stress already) and you can choose NOT to see the psychiatrist.

Your GP knows you better than some random doctor who has never met you and has made decisions about your care before even seeing you.

You do not HAVE to allow the Mental Health Team in, either - but THEY have the right to ask for you to be sectioned, where you will lose all rights regrding treatment. So when they turn up, or phone, be upbeat and say you're doing much better now. They'll be glad to get rid of a patient, anyway. You know how totally useless they are in any case. Get away from them.

I did that some years ago. They came to see me, uninvited, and I let them in, and they were bonkers. They kept asking me when my next appointment with the psychiatrist was etc etc and I said, Look, I'm absolutely FINE and I don't NEED to see the psychiatrist..........and eventually they left, after I promised I'd ring the Crisis Team if things went wrong ha ha ha ha ha yeah, right! We all know how EXCELLENT our Crisis Teams are.......

Go back to your GP. Stay with your GP. Get your medication from your GP.

It's not a question of refusing to cease taking any medications - it's more about taking control of where you go and who you consult to prescribe them.

I hope this has helped, my love. You can PM me if you want. xxxx  Tess

9

Thank you, it's good that you got off the benzo, I do think that if you can do it it's a positive thing but I just think that it has to be done the right way and only when a patient is ready, the fact that they offer no support at all with my current anxiety and think it's safe to cut so quickly is just frightening.

My husband said about chamomile tea, I never really had a taste for it but had a cup last night and it was indeed very soothing.

10

That is pretty much the way I thought it worked, years ago I saw a consultant psychiatrist who actually wanted to switch me from Diazepam to Lorazapam which is just another benzo, my gp at that time said that he could not go against the consultant but advised me to refuse that which I did.

It really is horrifying the way they treat people, very cruel and absolutely no consideration for the suffering their decisions inflict upon people who are already not well, it angers me a lot.

There may come a day when I feel ready to come off diazepam but it will be done my way, slowly and carefully and not the way they want to do it, I simply wont go, they are no help to me anyway so I just as well suffer and do my best to get through my problems myself.

11

Thank you, I have a telephone appointment with my gp booked for Monday morning so I can talk to her about it again, I really am in an awful state but these people have no intention of helping me with that, it's simply a desire to get me off of diazepam.

I'm glad you were able to manage your own withdrawal from sertraline, it truly is absolutely shocking that medically qualified doctors actually think it is in any way safe to stop any of these meds so rapidly.

I need to assert myself with this, I am in no way ready to taper at this point in time and certainly not that fast x

12

Hi, sadly it seems that all too often doctors disregard the guidelines about withdrawing from medications.

When I was at the start of this 'breakdown' they wanted me to attend a psychiatrist appointment which proved impossible due to agoraphobia, the consultant then wrote to my gp with advice on what to do and told her that I could reduce my dose by half over a 6 week period so 6 weeks to go from 20mg to 10mg, so rapid and no discussion about care of my mental health whilst it happened, I did discharge myself at that point, I have told the MH team time and time again that I am not ready and need help to get into a better place with my anxiety state but they just have no interest.

I will be printing off as much information as I can though and will make sure that my gp has copies of that, I have decided not to go to the psychiatrist appointment but he may well write to her again so I want to keep her up to speed and whilst she has been very supportive so far it worries me that she may become less supportive if they put more pressure on her so I would like to get my side across to her first, I will speak to her by phone on Monday and then make sure she gets all the info I can find.

13

Hi and thank you so much, I have decided that I will not be attending the appointment, it may even prove impossible due to my agoraphobia anyway because at the moment going anywhere is traumatic, how ironic that these people work in mental health yet have no idea what agoraphobia means.

I was aware that if I was ever sectioned I would lose all of my rights, not that they want me anyway, years ago I had dreadful PND and there was an incident, it resulted in my husband taking me to the psychiatric hospital because I had tried to run in front of a lorry and he had dragged me back, had he not been right behind me I would have been gone, anyway they told me that there was nothing wrong with me and sent me home.

My life is absolute hell at the moment but I would rather lie through my teeth and let them think I am okay than go through the hell of being forced to withdraw from diazepam rapidly and at such a terrible stage in my life.

You are so right about the crisis team too, absolute joke, I have called them hysterical and they just say 'have a bath and a cup of tea', they are like robots reading from a script and I have always felt worse after speaking to them, yesterday after the assessment I had to ring the samaritans because I was so distressed and a lovely lady there spent an hour on the phone with me calming me.

I will definitely be sticking with my gp, she has been great so far and always supported me as best she can, she even allows me a repeat prescription on the condition that my husband is 'in charge' of it, obviously it is a lot of tablets so she needs to make sure I am safe with them but she does that to save me the panic and stress of frequent visits to the surgery.

Your reply has helped me a lot, thank you so much, I just need to remember that I am an adult, they may well treat me like a child because I am ill but i'm not one and I need to assert myself and take control here, the way to do that is to get rid of them and stick with my gp.

I've enough to cope with being non stop anxious and struggling with the agoraphobia without that lot making me worse xxx

14

I'm sorry.  I don't have any contact with the psychiatric services any more after over 30 years of seeing them.  It is good that you know what you want to do.  Best of luck.  You may be fortunate and get off valium without too much difficulty.  I do hope so. 

15

YOU ARE WONDERFUL

Well done on taking charge of the situation, and how appalling it is that you and I and many others have to lie to moronic mental health teams who are allegedly there to help people in crisis.

While I was in a psychiatric hospital I used to wonder how any of them had managed to pass their exams because they're so STUPID.

I have a good GP, too, and I wouldn't go near a psychiatrist if someone offered me a million Mars Bars.

Just remember your legal rights as a patient. I think that is the key issue here.

Your GP is regarded legally as a Consultant these days and CAN over-ride other Consultants' diagnoses, prescriptions and any other treatment they suggest.

People often think that GPs are the lowest rung of the medical ladder but nowadays that just isn't true. They have to pass really heavy-duty exams in five fields (paediatrics, mental health, obstetrics, emergency medicine and one other) and also work as Junior GPs for a certain amount of time before they are Consultants. Often they are called Partners in a Practice.

Anyway, you're not going to let yourself be bullied by the mental health crew by the sound of it. Excellent.

Stick with your wonderful GP. Yes, I know many GPs aren't wonderful, but some  of them are and they should treasured.

What baffles me about your story most of all is that some dude who has never met you has decided to stop your diazepam. What a jerk.

Stay on the forum and give us updates, please, please, we so much want to help you.

Love Tess xx

16

Thank you so much for all of the information,i really appreciate it,it truly is awful that we have to lie to the very people who are supposed to actually help us.

I am going through absolute hell with the anxiety, trying so hard to fight the agoraphobia and am just exhausted with it all but all they want to do is add more problems and i'm not coping as it is without them making things worse.

It shocked me so much that a psychiatrist could decide that before even meeting me or actually assessing me himself, it's ridiculous given the fact that he has no real idea about me or my problems, still i don't really expect anything else from these people, there is no actual help there.

Thank you again xx