UK key workers for "vulnerable adults"

[primrose]

hi I thought that I would put this post in this forum because it involves self care in respect that I am classed as a vulnerable adult in the UK and have just been allocated a key worker who will assist me with things in my life that I need help with.

 

The key worker works for a charity which is funded by the council for the care of vulnerable adults with mental health difficulty. He has been wonderful and working hard to sort out some practical problems I have and he has 'gone the extra mile' by working longer hours so that he can help me. This key worker really cares and he wants what is best for me, but he is misguided and because of this, it has made me lose confidence in my relationship with him.

 

I am on 3.19mg of valium and I am holding the valium daily taper while I lose a bit of the seroquel that I am on as this drug is not helping my benzo taper in any way. Indeed, the NICE guidelines warn against prescribing such drugs in withdrawal. See following link http://www.cks.nhs.uk/benzodiazepine_and_z_drug_withdrawal/management/scenario_benzodiazepine_and_z_drug_withdrawal/managing_withdrawal_symptoms

 

Anyway, my keyworker wants me to get off drugs, as I take opiates and cannabis, or rather, he wants me to get help with dealing with the reason I do drugs and suggested appplying for rehab. This involves a six week detox from all drugs.

 

When I told him that I am tapering my benzo as fast as I can cope with, and from my past experiences of benzo withdrawal nearly driving me to suicide, I did not want to take the risk. He told me that he has been brought of valium this way in rehabs multiple times and has also seen others do the same. He said it was painful and it was a ***** but that was not permanent. He seemed frustrated that I wouldn't even give it a go, saying that at least I would have tried.

 

He said they would not force me to do anything without my permission, but he also said that there is an initial detox of 6 weeks where the person is clean. Even if I was to go and leave after two weeks cos of the withdrawal, the damage would have already been done.

 

For the time I would be there the big valium cuts they would force on me would set me back. Given that I have purchased suicide items when at a lower point in my taper, and that I have just started to improve so that I am no longer thinking about suicide, even though I know my keyworker wants whats best for me, but, in this case, because he cannot accept that I am tapering benzos as fast I safely can, and do not want to put myself through any un necessary pain, I no longer feel comfortable working with him.

 

He gave me five hours of his time on the phone yesterday, during that time, his attitude was hostile. He is aware of my past suicidality and this is documented so that I am safeguarded, but yet he still suggests a 6 week benzo detox, and I felt that his hostility came from frustration that I would not even consider trying the six week detox.

 

I could not convey to him that I felt that giving it a go would set my very fragile recovery back, he just did not believe that a 6 week detox would make me this bad, despite me telling him that I c/t off intermittent benzo use 3 years ago, and it has taken me all this time to make the small improvements I am seeing today.

 

I feel that as a keyworker, suggesting a 6 week valium detox, cos it worked for him and others with him, is inappropriate and a risk and I told him I am very saddened that he can not see this. I have to see him tomorrow and I am dreading it. He has offered me the choice of changing keyworker but said that he is more understanding that most of the other keyworkers, except, maybe one, who is a hippy type (nothing wrong with that) I don't want to alienate my keyworker and I want to ask you guys, am I being unreasonable in any way? and How can I approach my keyworker and tell him that he is hostile at times and although very helpful in other ways, this particular discussion has knocked my confidence in him? Many thanks

[Skyler]

This key worker really cares and he wants what is best for me, but he is misguided and because of this, it has made me lose confidence in my relationship with him.

He does not sound caring to me. Rather he is pushing his agenda on you for his own reasons, and they are obviously not in consort with what is best for you.

 

I am on 3.19mg of valium and I am holding the valium daily taper while I lose a bit of the seroquel that I am on as this drug is not helping my benzo taper in any way. Indeed, the NICE guidelines warn against prescribing such drugs in withdrawal. See following link http://www.cks.nhs.u...drawal_symptoms

Good for you. That was great advice you gave Sparrow. You really know your stuff, most impressive

 

Past experiences of benzo withdrawal nearly driving me to suicide, I did not want to take the risk.

A very healthy response.

 

He gave me five hours of his time on the phone yesterday, during that time, his attitude was hostile. He is aware of my past suicidality and this is documented so that I am safeguarded, but yet he still suggests a 6 week benzo detox, and I felt that his hostility came from frustration that I would not even consider trying the six week detox.

He tried to convince you to follow his advice to meet his needs, NOT yours. In imposing his agenda on you for FIVE hours, he violated your boundaries. I'm a social worker type, and would never do this. He was way wrong.

 

I have to see him tomorrow and I am dreading it. He has offered me the choice of changing keyworker but said that he is more understanding that most of the other keyworkers, except, maybe one, who is a hippy type (nothing wrong with that)

Don't see where you could do much worse.. excuse my sarcasm. Your account has my blood boiling. How about contacting MIND, BAT or Bliss Johns'. You should be able to get one or the other on the phone. I would cancel any further appointments with this guy until you talk with one of them.

 

I don't want to alienate my keyworker and I want to ask you guys, am I being unreasonable in any way?

and

How can I approach my keyworker and tell him that he is hostile at times and although very helpful in other ways, this particular discussion has knocked my confidence in him?

Why don't you want to alienate him? He is trying to harm you!! Again, this guy is WAYYY off base. You have a history of abuse and don't need social case workers to reinforce the pattern. I'm very glad you posted this for a reality check.

[GiaK]

I'm with Schuyler, he is not caring. He is in fact coercive and dangerous.

 

If you would like I wrote about the dangers of detox centers here:

 

Many existing detox centers for psych drug withdrawal are dangerous

http://beyondmeds.com/2012/01/21/benzodetoxdangers/

 

and if you want a long laundry list of posts about benzos that cause protracted withdrawal issues look here: http://beyondmeds.com/benzos/

 

you might be able to choose a few good links to share with him...he's a menace. I'm really sorry you're having to deal with him.

[Skyler]

Error... picked up miscellaneous characters that could not be deleted. Reposted below.

[Skyler]

Repost of message that was garbled above... could not get rid of the spurious characters even though they do not show in the editor:

 

Thanks Gia.. Ouch, this guy is bad news for sure.

 

Promise, I suggested you contact BAT, et al. because they know how programs for vulnerable persons work in the UK, and might advise you on the best way to approach the problem. I would ask to speak to the keyworkers' supervisor (the length of his intervention alone should raise a flag), but I'm not at all sure this would be best for you, nor do I have any way of knowing how responsive the organization might be. It's easy for me to make suggestions, but I would want to know if it were possible to access services with the help of someone who would not be biased by your workers' opinion.

 

Keep us informed.

[alexjuice]

I am unfamiliar with the UK but is it possible to get unlisted as a vulnerable adult? Your key worker problem seems sort of unnnecessary unless you believe you are a risk to yourself or others - which is not something that you believe, as I read you... Fire the key worker, no?

 

That's the only thing that comes to mind.

[primrose]

Hi Schuyler and GiaK

 

Thanks for your responses.

 

Within the organisation he works in, he is a very highly regarded and hard working employee.

In the past, my benzo withdrawal has alienated the mental health team as they did not understand just how slow I needed to taper, and they did not believe the symptoms I was experiencing after my c/t in March 2009 was down to withdrawal at all, but down to other illicit drugs I had stopped at the time.

 

I am in a vulnerable position and am on welfare, and to demonstrate that I qualify for welfare and assistance, I need to be acknowledged as a vulnerable adult. If I alienate all my keyworkers the way I alienated all of my mental health workers, due to this benzo withdrawal, I will not have any careworkers or keyworkers as I fear they may discharge me just like the mental health services did.

 

My fear is being surrounded by people ignorant of my situation and how I got this way, because that has happened before.

I thank you Gia for the link it was a sad read, I didn't finish it all cos I don't want to become sadder, but I did get the gist of it.

 

Me and my keyworker have clashed over this before and I got him to phone Battle Against Tranquilisers, which he did, twice, and left messages, but they did not return his call.

When I cited them in our argument yesterday, he did not take me seriously and said that they can't be that high profile if they don't return calls. I said they were busy but it did not wash with him.

He is the sort who only trusts doctors even though I told him they weren't trained in benzo withdrawal.

 

I never thought of him having an agenda, cos I just thought he was a bloke who went through hard times himeself, and through rehab, and wants to help others. He is trying to start an NA group here in this town.

If I was not as wise and took him up on applying for rehab and the detox attempt I made set me back mentally and I committed suicide, I wonder how he would feel then?

I thought of asking him this, but he may just tell me to stop being negative.

 

Intuitively, I get a sense of ego in him, but I assumed that came from his tough background, not malice, yet his tone was hostile.

I just found it hard to believe that even after I told him what I had been through with valium, he would still suggest a 6 week detox.

 

Please could you help me find out what agenda he would have for suggesting I do such a dangerous and damaging thing?

I am a bit naiive in spotting ulterior motives.

 

I myself rang battle against tranquilisers today and left a message on their helpline, and I want to ask them how to explain to people that a six week detox wont work because all my attempts have failed.

We have a local mind group that I sometimes attend but I go more for the company as I have not had much joy with the staff when I have gone to them with problems.

 

I did think about cancelling the appointment, but then I don't want to be seen as not engaging, like the mental health team saw me as. It makes me mad that people can be so ignorant that it borders on arrogant, or, do you think they are just being small minded and not meaning any harm?

 

I thought I would give him a note tomorrow because I cannot see any point in talking to him while I am not calm.

The problem is, I don't know what to put on the note.

 

Thank you also for the lovely compliment you gave about my reply to sparrow.

[primrose]

I am unfamiliar with the UK but is it possible to get unlisted as a vulnerable adult? Your key worker problem seems sort of unnnecessary unless you believe you are a risk to yourself or others - which is not something that you believe, as I read you... Fire the key worker, no?

 

That's the only thing that comes to mind.

 

I think I am going to have to change keyworker.

I don't really want to lose my vulnerable adult status because I still feel like a vulnerable adult and could use the services of a keyworker, but one that does not take my "Can'ts" as "Won'ts" and who's ego is not so big that he actually understands that some people's bodys are differnt to others.

[Skyler]

Yeow.. I missed the post above, thought the shorter one was your response.

 

Please could you help me find out what agenda he would have for suggesting I do such a dangerous and damaging thing?I am a bit naiive in spotting ulterior motives.

The keyworker has his own baggage, just as you yourself. He very well may have gone into the line of work he is in so he could impose it on others. A fair number of folk in the type of work he does do this. It's unfortunate, but true. And it's highly doubtful he has any clue as to the menace he presents.

 

I did think about cancelling the appointment, but then I don't want to be seen as not engaging, like the mental health team saw me as. It makes me mad that people can be so ignorant that it borders on arrogant, or, do you think they are just being small minded and not meaning any harm?I thought I would give him a note tomorrow because I cannot see any point in talking to him while I am not calm. The problem is, I don't know what to put on the note.

 

Strictly the facts ma'am.. straight and to the point. If you would like to write up a note and run it by me in a PM, feel welcome. I'm great at editing things down to the nub.

Thank you also for the lovely compliment you gave about my reply to sparrow.

 

You are most welcome.. it was an excellent post!

[GiaK]

he doesn't have to have a developed conscious agenda...the "helping professions" are sadly filled with people who think they know what is best for others (often based on their own personal and idiosyncratic experience) they don't realize that others may have radically different needs even in similar circumstances...and then they think it's a justification to coerce...it's plain and simple human BS...most of it all unconscious so you can't even talk to them about it...

 

I sent you the link so that it might give info in case he might hear anything at all...I'm sorry it distressed you.

 

You know if you call Recovery Road...they might help...it's a charity now...run by Bliss...that Schuyler mentioned...Bliss is a wonderful, loving and gentle woman.

 

On the benzo page I linked to are many items from the media...the British Media in fact...that talks about protracted withdrawal...find some news articles to share with him...I'll go see if I can pick some out....

[GiaK]

actually, I'm sorry...I'm very tired now, but if you go to the benzo page http://beyondmeds.com/benzos/ and scroll down to: News and general info on benzodiazepines...that section is all from the media reporting on how awful benzos and withdrawal are...you might find some pieces to support you...even if you change workers it might be good to have on hand...some good articles that talk about benzo illness...or protracted withdrawal

[primrose]

he doesn't have to have a developed conscious agenda...the "helping professions" are sadly filled with people who think they know what is best for others (often based on their own personal and idiosyncratic experience) they don't realize that others may have radically different needs even in similar circumstances...and then they think it's a justification to coerce...it's plain and simple human BS...most of it all unconscious so you can't even talk to them about it...

 

I sent you the link so that it might give info in case he might hear anything at all...I'm sorry it distressed you.

 

You know if you call Recovery Road...they might help...it's a charity now...run by Bliss...that Schuyler mentioned...Bliss is a wonderful, loving and gentle woman.

 

On the benzo page I linked to are many items from the media...the British Media in fact...that talks about protracted withdrawal...find some news articles to share with him...I'll go see if I can pick some out....

 

Hi Gia

 

The link did not distress me, in fact, I expected it to be bad cos benzos and detoxes dont mix.

 

I actually made a point of telling him how many people online I had spoken to who had gone into detoxes and rehabs and in a condescending manner he said "we are in England" and he would not take on board what I wanted to share with him, the experiences of the traumas that others had.

 

He struggled through the six week detox and so did others in rehab with him, but that does not mean that I will, and to me, I feel that he sees me as being too scared to have a go, and he is oblivious to the fact that I am scared for a good reason. A reason that just will not wash with him.

 

I dohave to add that he told me that he is quite happy for me to refuse his advice with drug detoxes and will never pressure me to go on one. He said I would be unlikely to get funding as rehab places are a high premium here and rare as hens teeth.

 

Just the fact that he suggested it in the first place, the fact that he didnt believe what I told him going by my own experience and knowing my own body, and his general negative attitude and hostile tone put me off.

[Skyler]

He struggled through the six week detox and so did others in rehab with him, but that does not mean that I will, and to me, I feel that he sees me as being too scared to have a go, and he is oblivious to the fact that I am scared for a good reason. A reason that just will not wash with him.

 

I dohave to add that he told me that he is quite happy for me to refuse his advice with drug detoxes and will never pressure me to go on one. He said I would be unlikely to get funding as rehab places are a high premium here and rare as hens teeth.

 

Just the fact that he suggested it in the first place, the fact that he didnt believe what I told him going by my own experience and knowing my own body, and his general negative attitude and hostile tone put me off.

 

See my response #9 above.. sorry, I did not see your longer post!

 

Not to backtrack, but how long did he spend on the drug rehab issue? Sounds like you really need the connection.. I'm just concerned about his attempt to impose his beliefs on you.. That is unnerving to say the least.

 

I don't want to be seen as not engaging, like the mental health team saw me as. It makes me mad that people can be so ignorant that it borders on arrogant, or, do you think they are just being small minded and not meaning any harm?

How long have you worked with this guy.. I wonder if the hippie type (thas me folks!), would be more amenable to you. And do you think MIND might be forthcoming if you showed them the post you started off with here... all these considerations tend to make me say just switch. Wow... he really did step where he ought not.

[primrose]

Hi Schuyler and Gia

 

I seem to have missed reading a few of the posts above, sorry.

 

In the helping professions, I find that you get a lot of ego-centric people who are so hungry to look good and to play a good part that their image awareness over-shadows their actual quality of work.

Many of these people are responsible for the care of so many people like myself and those more vulnerable than me.

In the UK charities now do a lot of the work that NHS used to do, but for less money, dealing with staff who are not trained in mental health care.

Even within the mental health services, you get staff who do everything by the book, but who have no clue about real people.

 

These people are a menace even if it is not meant that way.

 

Thanks for the beyondmeds link to the benzoinfo. I already have that site marked. I will chase up the Bliss Johns thing and maybe give her a call.

 

About the note, I dont even know if I dare go out and see him face to face after that call.

Sorry for being unsure and dithery.

Thanks for the pm offer schulyer.

[Skyler]

Thanks for the beyondmeds link to the benzoinfo. I already have that site marked. I will chase up the Bliss Johns thing and maybe give her a call.

 

About the note, I dont even know if I dare go out and see him face to face after that call.

Sorry for being unsure and dithery.

Thanks for the pm offer schulyer.

 

Yup... (my computer just crashed!)

Put a call into Bliss Johns as Gia suggested. And you are absolutely correct, they have lower level workers pitch hitting for people who had professional training to no good end for either you or the workers. This guy is passing along to you what worked for him, without realizing it's not a one stop fits all deal, only that is what he has apparently been taught. Sigh, that was somewhat the mantra from benzo withdrawal at TRAP. It was their road or the highway for some. I should know.. I was brain logged, but did not realize how badly until I got here.

[primrose]

Hi

 

I texted my keyworker and I also phoned the man in charge of him.

None of them have a clue about tranq withdrawal, and, frustratingly, BAT have not got back to my keyworker despite leaving two messages.

[Skyler]

Hi

 

I texted my keyworker and I also phoned the man in charge of him.

None of them have a clue about tranq withdrawal, and, frustratingly, BAT have not got back to my keyworker despite leaving two messages.

 

From what I've heard, BAT does eventually get back to people, but I'm not sure how they would be contacting someone on your behalf. Stick with it, eventually something should 'shake' out of the bushes. Have you emailed BAT? I wonder if that would have a better result? I contacted them a few years ago and they gave me a number to call thru, but that was before they started to get so overwhelmed.

 

Have you contacted Bliss Johns crew? They use a telephone help line from what I understand and this sounds like something they could help with.

[primrose]

 

Hi

 

I texted my keyworker and I also phoned the man in charge of him.

None of them have a clue about tranq withdrawal, and, frustratingly, BAT have not got back to my keyworker despite leaving two messages.

 

From what I've heard, BAT does eventually get back to people, but I'm not sure how they would be contacting someone on your behalf. Stick with it, eventually something should 'shake' out of the bushes. Have you emailed BAT? I wonder if that would have a better result? I contacted them a few years ago and they gave me a number to call thru, but that was before they started to get so overwhelmed.

 

Have you contacted Bliss Johns crew? They use a telephone help line from what I understand and this sounds like something they could help with.

 

Hi, thanks for your reply.

 

I didn't contact Bliss Johns, because while I am sure she knows what she is talking about, she would not have any credibility with my keyworker who would only take seriously a charity dealing with medical things like withdrawal, to have close ties with the medical profession as he trusts doctors.

This is why I am so annoyed with myself for forgetting to mention that BAT have delivered post graduate training to GP's in many local areas.

Still, I did put this in the text which I sent my keyworker.

I will give BAT a few more days and then I will call them again.

I am wary of getting an email from them telling me that 6wk detox is dangerous, because I had a bit of a fallout with BAT in 2009. I was in much more acute withdrawals then because I had c/t that march and my psychiatrist wanted to reduce me from 15mg to 12mg. I rang Una and got her to email me a letter to me to give to my shrink. When I got the letter there was a bit of it I wanted to change, so I emailed Una and asked her if I could.

She said to save it and change it how I wanted and another two times I spotted bits I wanted to change, so,, each time, out of politeness, I emailed Una and asked her.

The third time, though, I made a mistake in the last paragraph of the letter and the letter read "reduce by 1mg a day" instead of "reduce by 1mg per day to 14mg and stay on 14mg"

I shuold not have changed it at all, but I was over obsessively anxious due to acute benzo withdrawal and not thinking straight..

This made BAT look stupid and angered Una.

She thought I was playing some game and convinced my therapist that I was.

Una said that in future, she would write directly to any medical professionals if needed and will not give me any letters again.

I shied away from them for a long time, but in May this year, after a doseage error, I left a message and Una called.

I told her who I was and how I was sorry the way things had worked out three years prior, and she said she does not hold a grudge.

This is why I am very wary of asking Una if I can give her email to my keyworker, because given our history, I am sure Una will feel very wary about giving me letters.

The more I think of my keyworker, the more hurt I feel by the way he spoke to me.

You know when people disagree with you in a kind of winy voice? we call it pissy her in the UK.

Well, when I first got to know him a few weeks ago, I sensed this, but, looking back, I guessed I ignored it and didn't take it as a warning sign, because I was too weak to face up to the dissapointing fact that my keyworker was pissy and I wasn't really happy with him.

I couldnt handle the dissappointment, because I have wanted support for so long, that when it finally came, I just wanted to bask in the fact that I was getting supported and I guess I ignored the early warning signs.

Also, I had already alienated mental health professionals, because the depression and anxiety from my withdrawal meant I stayed in bed most of the day where I felt safe and I didn't have the motivation to attend courses a bus ride away, that had been recommended to me.

I did attend some, but felt they werent suitable for me at the time. They were CBT.

The mental health staff did not seem to accept the effects the withdrawal induced anxiety and depression had on me and my ability to engage and they took my "I Can'ts" as "I won'ts" and got frustrated with me.

My withdrawal alienated them and they discharged me from their care.

I do not want to alienate my Keyworkers organisation the way I alienated the mental health care staff.

I am petrified of getting another patronising keyworker as that will start to build up a negative pattern to support staff, about me, that I reject multiple support staff, so it must be me in the wrong, when I know in my heart that they are insecure and that is why they need to scapegoat someone and talk down to them.

I went for free lunch today to a charity who initially hooked me up with the organisation who my keyworker works for.

They said they could see how distressed even talking about it made me.

The boss of the organisation my keyworker works for is visiting this charity on monday when they do free breakfast.

They instructed me to come and to write down everything I want to say to him and hand it to him, and they will be on hand to support me if I get too overwhelmed.

I am not prepared to put up with people belittling me because their own insecurities make them do it.

Anyway, I will stop rambling now. I am really appreciative of your replies, you have been a source of support.

[Skyler]

I didn't contact Bliss Johns, because while I am sure she knows what she is talking about, she would not have any credibility with my keyworker who would only take seriously a charity dealing with medical things like withdrawal, to have close ties with the medical profession as he trusts doctors.

They have government funding… they are not as credible as BAT? I would give them a try, but then that is me.. the keyworker can always disregard what they say, and it could not hurt. Gia may have more input here.. sounds like she is more familiar with Bliss Johns.

 

She thought I was playing some game and convinced my therapist that I was. Una said that in future, she would write directly to any medical professionals if needed and will not give me any letters again. This is why I am very wary of asking Una if I can give here mail to my keyworker, because given our history, I am sure Una will feel very wary about giving me letters.

So maybe she would write an email directly to your worker as opposed to calling him? Problem is, she can end up playing useless phone tag with calls and this might be the reason he has not yet heard from them. It does not sound like Una is holding any sort of grudge.. just recognizes your need to ‘tweak’ messages which was time consuming for her.

 

I did attend some, but felt they werent suitable for meat the time. They were CBT. The mental health staff did not seem to accept the effects the withdrawal induced anxiety and depression had on me and my ability to engage and they took my "I Can'ts" as "I won'ts" and got frustrated with me.

A lot of people respond negatively to CBT and the “I Can’ts…etc. I’m not a fan of this approach. Guess it can be useful for Self Help.. but not as a therapeutic modality. You might be interested in this site that compares CBT with depth therapy.

 

The boss of the organisation my keyworker works for is visiting this charity on monday when they do free breakfast. They instructed me to come and to write down everything I want to say to him and hand it to him, and they will be on hand to support me if I get too overwhelmed. I am not prepared to put up with people belittling me because their own insecurities make them do it.

The problem is we all do this to some extent, so if you are looking for this you can always find it. This said, the keyworker you had did sound patronizing.. so maybe let the keywork supervisor know this sort of mindset activates your old baggage.. in this you take part of the responsibility, yet would still be considered for a different worker. What do you think?

 

Write down what happened so it fits on one Word page. Less is more.

[GiaK]

This is from Bliss's website...looks appropriately professional...

 

http://recovery-road.org/for-professionals/

 

For Professionals

If you are a doctor, you may be reading this because you are concerned about a patient who is troubled by bizarre symptoms which s/he claims to have been caused by discontinuance of a benzodiazepine. While you appreciate that withdrawal does indeed exist, you are baffled that although it has been months or maybe one or two years since the last dose, your patient is still insisting that the problems are caused by withdrawal. Before you come to any conclusions, please read the following:

 

What Patients Wish Their Doctors Knew:

While many doctors are aware of the dependency and withdrawal issues related to the long-term use of benzodiazepines, others are still limited in their knowledge and may consequently give substandard care, often putting their patients’ safety at risk. The following are useful points which users wish their doctors were aware of at the times they were treated.

 

Symptoms

When taken long-term (more than four weeks), the patient can become dependent on the drug and may experience withdrawal symptoms such as profuse sweating, headaches, nausea, dizziness, gastric disturbances, palpitations, chills, muscle pain, twitches, spasms and tremors. Psychological symptoms such as feelings of depersonalisation, derealisation, anxiety, panic attacks, cognitive ‘fog’ and distorted visual, tactile, auditory and gustatory perception are also common.

 

Cold Turkey

A patient should never be advised to discontinue taking a benzodiazepine abruptly. Quitting cold turkey is dangerous and can cause serious problems including seizures and psychosis.

 

Tapering

The decision to withdraw should be the patient’s and she or he must be allowed to taper off the drug at a comfortable pace using the most appropriate weaning process. The more common methods are: substituting with diazepam, titration by crushing the tablet into a powder and mixing it with water, and the direct method where the dosage is very slowly reduced. It is most important that the patient feels in control of the process. Apart from the usual withdrawal challenges, being pressured into tapering too quickly can cause additional anxiety and hinder recovery.

 

Clinical notes and guidance on assessing and managing patients’ withdrawal from benzodiazepines and z-drugs can be found at the NHS Clinical Knowledge Summaries website. (Please note that the tapering schedules recommended are too rushed for patients with high dependencies. A minimum period of 4 to 6 weeks per stage of reduction is now regarded to be more acceptable than the 1 to 2 weeks currently suggested.)

 

Duration

The conflicting reports regarding the duration of withdrawal and whether or not protracted withdrawal exists poses one of the biggest problems for patients. Many of the people who contact us are baffled when their doctors explain that since the drug has already left the body, it is impossible for them to still be experiencing withdrawal. This is inaccurate and misleading. When the benzodiazepine sub-units have been down-regulated, the process of re-synthesising and re-externalising onto the receptor assembly can take weeks, months or longer.

 

Doctors who are unaware of this usually acknowledge the acute and early post-acute stages of withdrawal. However, once symptoms persist longer, these patients are told the withdrawal period has ended and the problems are ‘all in the head’. Benzo-wise doctors will agree that while many people recover within a six to eighteen-month period, it is not uncommon for a percentage of patients to experience symptoms (often interspersed with windows of normality) for two to three years or longer in rare cases.

 

‘Pre-existing anxiety’ myth

Because many patients are prescribed benzodiazepines for anxiety-related issues, the consensus is usually that the post-withdrawal syndrome or any protracted symptoms are in fact due to a resurgence of the pre-existing anxiety. So many patients who were prescribed benzodiazepines for a medical condition and had no history of anxiety, depression or any other psychological problem have reported exceptionally high levels of anxiety during withdrawal. They, too, experience intense organic fear, distorted perception and numerous anxiety-related symptoms. Pre-existing anxiety or not, a nervous system in a hyperexcitable state due to the down-regulation of GABA receptors can reduce the most grounded and stable person to literally a ‘quivering wreck’.

 

It is the responsibility of every doctor who prescribes a benzodiazepine to give the patient information on which the decision to take or not take the drug can be based. When treating patients for anxiety, insomnia or other related conditions, a doctor might understandably be hesitant and conclude that imparting too much information will only make matters worse. However, keeping patients ignorant of the addictive properties of a drug is not in their best interest; this is the reason for the ‘unpleasant surprise factor’ that presents in the form of withdrawal.

 

For Counsellors and Other Therapists

You may be reading this because a client who has presented with very common symptoms of a mental health disorder (as outlined in the DSM-IV), insists that they are caused by “benzo withdrawal” and claims that there are many other people “online” with similar problems. Your client may have mentioned the Ashton Manual, the Benzo-Wise book or has asked you to visit this website. We hope that the information here will help you to understand the ways in which withdrawal can manifest, and that this will result in your client receiving the best possible care.

 

What Clients Wish Their Counsellors Knew:

To treat a current or ex-user of benzodiazepines without first acquiring in-depth knowledge of the drug and withdrawal syndrome can result in unintentional harm. A good understanding of benzo-related issues, not just general drug use, is essential.

 

Psychological Symptoms

When assessing a client in the throes of withdrawal, you may note that many of the symptomatological criteria listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) are fulfilled. A nervous system in overdrive and a constant state of hyperexcitability can result in the most peculiar and unexpected psychological symptoms. This makes misdiagnosing a high probability and knowledge of benzodiazepines a necessity. If the symptoms surfaced during withdrawal, it is best to consider them as physiological and not due to a mental health issue. After the client has achieved full recovery and all the withdrawal symptoms have abated, further assessments of any remaining psychological issues may lead to a more accurate diagnosis and appropriate treatment.

 

Inability to Process

In addition, memory impairment, confusion and lack of concentration are common both in current and ex-benzo users. Therapeutic treatment which involves maintaining a train of thought is ineffective; it can also be mentally and emotionally draining for these clients. It is only when the nervous system recovers and cognition improves that exploration and processing will work.

 

Underlying Issues

A client may have had deep emotional problems which are not related to benzos or withdrawal. They could have been the reason for which the drug was first prescribed. With discontinuance, these issues may resurface. Because of the complexities of long-term benzo use and withdrawal, it will be impossible to determine what is benzo-related and what is not. Again, it is in the best interest of the client to wait until post-recovery when the symptoms have subsided to address the pre-existing issues.

 

Anyone in benzo withdrawal will benefit most from active listening, constant reassurance, and empowerment through the learning of coping skills. Probing and processing of deep emotional problems should be postponed until after the repair of the damage caused by the drug. This will be achieved in due course and normal brain function will return. The ex-user will recover and any psychological symptoms caused by benzodiazepine withdrawal syndrome will disappear. Should there be any post-traumatic issues or return of an underlying psychological problem post-recovery, then an appropriate counselling or psychotherapeutic approach will certainly be beneficial.

[Skyler]

Promise.. how about printing the above off and attaching it to your account of what happened. The two together would make a compelling case and you wouldn't need a letter from BAT.

[primrose]

Hi Schuyler and thanks

 

I will give Blliss Johns a call and have a chat with her. She may be able to help me articulate, in an effective way, how benzo withdrawals are a medical, rather than an addiction matter, to lay people, who have no interest in listening to me explain why I cannot do certain things.

 

I agree that the tweaking of the letter was time consuming for Una, but, yes, Una is now cool with me agian. I don't really want to tell her my keyworker tried to get hold of her, because I don't want to step on my keyworkers toes, as he may not want me to tell her he left messages.

As Una and my keyworker are not in all day, there is the inevitible telephone tennis.

I have not spoken to my keyworker since Tuesday, so BAT may have rung him back by now.

Thank you for the link, I will read that.

I watched a tv program where a man who had a psychological block about swallowing food and was unable to eat cerrtain foods, got CBT and was able to eat and swallow for the first time in years.

I just felt that it missed a whole chunk of stuff which it just didn't look at. It did not seem holistic at all.

I think that belittling people is unacceptable. It feels injurious and takes a while to bounce back from. It hurts even though I know people are only doing it because they feel small themselves.

Thank you enormously for using the words, "This sort of mindset activates my old baggage" I will put "This sort of mindset activates my emotional distress which feels distressing, and has a negative impact on my mental health"

I'm really glad I came here for help.

Yeah, I have a lot to say but dont want to give him any more than a page.

The thing that is taking up the space is telling him how I got addicted, the symptoms I went though and am still going through, and why they affect my life.

The stumbling block is that they don't want to know as they are not medical professionals, yet at the same time, are judging me as unwilling, when the truth is so much different.

It is so sad because I need them to understand in order for our relationship to work.

[Skyler]

The stumbling block is that they don't want to know as they are not medical professionals, yet at the same time, are judging me as unwilling, when the truth is so much different.

It is so sad because I need them to understand in order for our relationship to work.

 

You have a reformed substance abuser for a keyworker and your complaint is one the supervisor has heard before, that your keyworker only recommends the route he followed (or close to.. it's preventing him from seeing yours.) When former abusers counsel others their experiences often effect objectivity. Even if the keyworker is well regarded by the supervisor, the problem should be evident.

 

Take a printout of the page Gia put up... it won't hurt anything, and at best will fill in any blanks you leave out of your story. That's what I'd do in your position. And there is a reasonable chance the supervisor knows of the organization. At the very least, you would not be as pressured to cover every contingency in your own narrative, and the super does not have to read it if he does not want to.

 

Targeted interventions can help for the type of issues you described above. Insight folks just don't give them special names and they become a natural part of the process. Glad you are going to do some reading.

 

Glad you feel helped.

[primrose]

Hi Gia and thanks.

 

Bliss jJohn's site does not have a telephone number.

I just read her info.

 

This is what I would love them to read, but I have the strong suspicion, that they will just say what they usually say, "We are not medical professinoals" and they show a reluctance to get involved, over a willingness to learn all about the hurdles their client has to overcome.

 

Bliss's first paragraph is something I would love to say to my doctor.

I remember handing the ashton manual to my doc, (With the relevant points high-lighted and asked her only to read the highlighted bits) she said she hasnt got time and doesn't care what some professor says.

 

While many doctors are aware of the dependency and withdrawal issues related to the long-term use of benzodiazepines, others are still limited in their knowledge and may consequently give substandard care, often putting their patients’ safety at risk. The following are useful points which users wish their doctors were aware of at the times they were treated.

 

The list of symptoms just seems overwhelming for a busy doctor who's patients are like items on a conveyor belt.

 

We wished those caring for us would realise how long tapering can take for some, and not to be hostile with users because the tapering affects so many areas of life.

I think BAT also use the NHS Clinical Knowledge Summaries website. I should have told my keyworker about the nhs recommendations for coming off benzos, but it didn't enter my head, as my head was too full of upset emotions, due to beingn talked to in a hostile way, for something that I cannot help.

I wish I could have succeeded in explaining to my keyworker, that "since the drug has already left the body, it is impossible for them to still be experiencing withdrawal" is wrong.

This is the main point that I struggled with. My keyworker said that his withdrawal was a *****, but he got through it.

I asked him why go through unnecessary pain? He responded because it gets you drug freedom, he may have said its a trade off.

I could not articulate that drug freedom from valium in six weeks would come at a huge cost, that cost would be loss of freedom in many other different aspects of life, causing great restrictions to life.

Nobody wants to know when I start talking technical, like receptors and stuff. They switch off.

My keyworker only acknowledge the acute and early post-acute stages of withdrawal. I feel like I am being told my problems are ‘all in the head’when I know they are not.

I really need an offline ally to convey this message to those who care for me, otherwise I have no hope of a good relationship with them.

 

I had bad pre existing anxiety and casting my mind back, there was only one period in my life when I had anxiety comparable to benzos, and that was for a space of time when I was 11 and going through sh1t.

 

What is organic fear? My guess is that it is fear not caused by a psychological or external stressor.

 

Pre-existing anxiety or not, a nervous system in a hyperexcitable state due to the down-regulation of GABA receptors can reduce the most grounded and stable person to literally a ‘quivering wreck’.

This is what my keyworker could not get into his head.

 

I had an ‘unpleasant surprise factor’ when I stopped taking valium in 2009.

It's a shame Bliss Johns, does not say "For keyworkers" as well as doctors therapists, counsellors.

 

I've also added "mental health symptoms with a physiological cause", reading the Bliss Johns stuff helped me articulate that.

I wish I had succeeded in making my ex mental health care workers aware that "further assessments of any remaining psychological issues may lead to a more accurate diagnosis and appropriate treatment", but they just slammed the door in my face and did not want to know.

 

In fact, I would love to give my keyworkers boss the Bliss Johns page to read but I don't know if I could take the dissappointment and frustration if he refused because he is not a doctor, therapist, or counsellor.

Post recovery, I now have no access to care to address my pre-existing issues.

Reading this has made me feel sad, because it has made me more aware of what I need, but will not get.

[Skyler]

This is what I would love them to read, but I have the strong suspicion, that they will just say what they usually say, "We are not medical professinoals" and they show a reluctance to get involved, over a willingness to learn all about the hurdles their client has to overcome.

 

Yup.. that's the bottom line, and you need to accept anxiety to advocate for yourself... noone else can do this for you.

 

In fact, I would love to give my keyworkers boss the Bliss Johns page to read but I don't know if I could take the disappointment and frustration if he refused because he is not a doctor, therapist, or counsellor.

You are being too defensive. Your key worker is the one who crossed the medical boundary and imposed something that was not healthy on you. The ball is in your court, not theirs.

[Skyler]

Primrose.. you are only providing 'medical' info for the purpose of showing the need for folks to leave your benzo taper alone. The keyworker got into your 'soup' where he does not belong. You are not asking for any type of medical help, quite the reverse. And keep it simple, don't go into anything other than the taper issue unless you need to.. that is plenty.

[Altostrata]

I am on 3.19mg of valium and I am holding the valium daily taper while I lose a bit of the seroquel that I am on as this drug is not helping my benzo taper in any way. Indeed, the NICE guidelines warn against prescribing such drugs in withdrawal. See following link http://www.cks.nhs.uk/benzodiazepine_and_z_drug_withdrawal/management/scenario_benzodiazepine_and_z_drug_withdrawal/managing_withdrawal_symptoms

Primrose, these guidelines warn against ADDING an antipsychotic when withdrawing from a benzo.

 

You are already taking the Seroquel and physiologically dependent on it.

 

You keep on insisting you can taper both drugs simultaneously, then you are puzzled when you get withdrawal symptoms.

 

If you jounce your nervous system around by decreasing two drugs simultaneously, don't be surprised if it doesn't work very well.

 

Your key worker sounds clueless and manipulative and badly in need of some education about withdrawal.

[primrose]

I am on 3.19mg of valium and I am holding the valium daily taper while I lose a bit of the seroquel that I am on as this drug is not helping my benzo taper in any way. Indeed, the NICE guidelines warn against prescribing such drugs in withdrawal. See following link http://www.cks.nhs.uk/benzodiazepine_and_z_drug_withdrawal/management/scenario_benzodiazepine_and_z_drug_withdrawal/managing_withdrawal_symptoms

Primrose, these guidelines warn against ADDING an antipsychotic when withdrawing from a benzo.

 

You are already taking the Seroquel and physiologically dependent on it.

 

You keep on insisting you can taper both drugs simultaneously, then you are puzzled when you get withdrawal symptoms.

 

If you jounce your nervous system around by decreasing two drugs simultaneously, don't be surprised if it doesn't work very well.

 

Your key worker sounds clueless and manipulative and badly in need of some education about withdrawal.

 

Hi Altostrata and thanks.

 

I went on the seroquel at the beginning of withdrawal because I was desperate for a magic bullet to take away the symptoms. I told the medical staff of this contra-indication but they just fobbed me off.

 

I am not tapering both drugs simultaneously.

 

I have been on 3.195mg val for weeks now.

 

Yes, my keyworker sounds clueless and in need of education, but he has no ears to hear.

[primrose]

Hi Schuyler and thanks.

 

I am sorry but I am not very good at understanding things sometimes, and am not really clear what you mean about accepting anxiety to advocate for myself.

How can I advocate for myself if I am anxious?

 

Please could you tell me more about how I am being too defensive, because I am not fully clear what you mean.

My keyworker did stress many times that it was my choice what I did.

I just didn't like his attitude to the choice I made, and his pi$$y and offensive tone of voice. I felt like he was a male relative who was angry with me and having a pop at me.

 

Also, when you say the ball is in my court, please could you clarify what you mean?

 

When I have things on my mind like this, other mental faculties suffer, i.e. my ability to understand. Thats why I felt so vulnerable after my keyworker said I was not listening to a word he said.

I know on the surface he has a reputation as a caring helpful man, and has, indeed helped me, even though he said he is not belittling me, I still somehow felt bullied by him and I don't know why, but my instincts insist I was bullied, but I need to know why.

 

I will try to keep it relevant.

The important subjects are the taper, the fact that mental health services got me wrong and have passed on wrong info to the charity, and the intimidating and upsetting verbal negativity I got from my keyworker which I think is unacceptable and the fact that keeping him as my keyworker will make my mental health deteriorate.

[Skyler]

I am sorry but I am not very good at understanding things sometimes, and am not really clear what you mean about accepting anxiety to advocate for myself.

How can I advocate for myself if I am anxious?

Get prepared, write it down and hand your material to the supervisor. Let him ask you the questions, and just refer back to the materials you handed him. You will be anxious, that is your MO.

 

Please could you tell me more about how I am being too defensive, because I am not fully clear what you mean.

You keep justifying yourself.. let the facts speak for themselves.

 

My keyworker did stress many times that it was my choice what I did.

This is an example. The issue is what the key worker said about tapering. Nothing else mattered.

 

I just didn't like his attitude to the choice I made, and his pi$y and offensive tone of voice. I felt like he was a male relative who was angry with me and having a pop at me.

That is your fear... but giving the worker his way will only reinforce the fear. I am sorry your male relative were so awful to you, but you are in a position to stop this guy from doing the same. This is within your power.

 

Also, when you say the ball is in my court, please could you clarify what you mean?

You are right, they are wrong. You are in charge, the ball is yours to play.

 

The important subjects are the taper

the fact that mental health services got me wrong and have passed on wrong info to the charity, and the intimidating and upsetting verbal negativity I got from my keyworker which I think is unacceptable and the fact that keeping him as my keyworker will make my mental health deteriorate.

And none of that is relevant to your request, Focus almost on the VERY bad advice you were given about your taper. This is NOT about you, it IS about the key worker.

 

I can't advise you further because I'm not you, and I won't be there. You have enough of a case to request reassignment without even mentioning the way he made you feel (though judicious references might help.) This did not happen because you have MI issues, it happened because the key worker was insensitive, overstepped his bounds, and knows bubkis about tapering, as a result of which you distrust his judgement.

 

edit 8:05 PM