The Benzodiazepine Scandal PETITION PLEASE SIGN

[[lo...]]

Beth - I have written to the health correspondent at the Daily Mail as follows.  I hope you don't mind me including your website address and the link to the petition as both are in the public domain anyway.  I decided I may as well do something myself instead of expecting you to do it.  I hope I don't live to regret this.  I am not a fan of the popular press but they do have their uses.

 

 

Dear Sophie

 

40 years "lost" to prescription drugs (nitrazepam)

 

I read your article this month in the Daily Mail about the increased prescribing of drugs in the NHS.  I wonder if you would be interested in my story, particularly given the recent feature of Luke Montagu, Viscount Hinchingbrooke,  in the Times Magazine. He has suffered so terribly due to prescription drugs.

 

I was prescribed nitrazepam in 1975 for myoclonic epilepsy.  I was 20 years old and training to be a teacher. Within two months I had lost one quarter of my body weight (8.5 to 6.5 stones) and had tried to commit suicide.  At that time, no link was made between the drug and my sudden decline in health.  I was referred to a psychiatrist and have spent my entire adult life on anti depressant drugs.

 

The next ten years were terrible.  I was either an inpatient or day patient at a psychiatric hospital or in bed at home.  I suffered severe depression, agoraphobia, monophobia, paranoia, suicidal feelings and so forth.  It is only be sheer chance that I am still alive today. Anti depressants did not seem to help very much at all.  At one point it was suggested that I might spend the rest of my life in hospital as happened in those days.

 

In my 30s, I decided that there was no longer any point in looking for a cure for this “depressive illness”.  I set about struggling my way back into life a step at a time and was reasonably successful in doing so.  I completed a secretarial course, worked for four years and then completed a four year degree.  I also joined the high IQ Society Mensa.  Twenty years of working in the NHS followed until I had to take early retirement on health grounds at age 59.  My 50s were blighted further by IBS which steadily got worse.  A few months after retiring I consulted a chiropractor and within six weeks I was completely symptom free and have remained so since.  My spine had been misaligned and pressing on nerves leading to the gut.  Ten years of visiting my GP practice and being given pills had been completely fruitless.

 

Throughout my adult life, I have never free from depression or chronic fatigue.  I felt extremely alone no matter what the situation and could not understand why,  I retired in 2012 and moved to a new GP practice.  At the first consultation it was suggested I stop taking nitrazepam as it was no longer a recognised treatment for epilepsy.  I decided to give it a go.  I tapered over three months and had no withdrawal symptoms and no signs of still having myoclonic epilepsy.  Over the next six months I was more depressed than usual which was very odd.  I had nothing to be depressed about.  Then I became extremely ill physically and have spent 22 months bedridden 90% of the time.  Pressure inside my head, squeezing sensations in my brain and unbearable nerve pain have been the worst symptoms  I have been suffering from benzodiazepine withdrawal syndrome.  Neither my GP nor the psychiatrist to whom I was referred recognised that this was what was wrong with me.

 

Withdrawal has been a terrible experience but for the first time in my adult life I am now free from depression and have been for almost two years.  There is no doubt now that nitrazepam has been a large part of the reason for my terrible experience with depression over the past forty years.  I no longer take anti depressants, nor do I need them.  I realise now that I was unable to connect with my own emotions due to nitrazepam.  Now that I am off that drug I feel completely normal emotionally and psychologically.  I hope that my physical health will eventually return to normal also.

 

I would like others to read my story and it might make them think twice about being on these types of drugs.

 

I would like doctors to read my story and realise what a waste of NHS money it has all been as well as ruining my life.

 

I would also like to know why there is little recognition or support for patients suffering from benzodiazepine withdrawal syndrome when there seems to be considerable help available for illegal drug users.

 

I am not the only person to have suffered in this way.  If you look at this website you will see another sufferer has endured just as much since being prescribed nitrazepam over 40 years ago.

 

http://www.beatingbenzos.com

 

She is bravely trying to get a petition going but is struggling to find support.  Is this because benzodiazepine withdrawal is no longer a widespread problem and we have been particularly unlucky or are we just not reaching the right people.  Your help would be much appreciated.

 

http://www.thepetitionsite.com/491/850/205/the-benzodiazepine-scandal/?taf_id=13912931&cid=fb_na#

 

I live in Scotland by the way.

 

 

:thumbsup:

 

We can but try.

 

Fiona 

 

[[wi...]]

I like Fiona.It's awesome that you are doing this.I hope they publish it in the paper so others can see the damage these pills do to people.God bless you and praying for you.

[[Ri...]]

Wow, great letter Fiona, let's hope it gets some ones attention.

[[Mo...]]

Wow, great letter Fiona, let's hope it gets some ones attention.

 

Purrfect Fiona.

[Guest [Ke...]]

Thanks Fiona, this is great. My husband wrote to the Mail and most other leading rags awhile back but, guess what, no reply. We put a lot of work and effort into these letter only to be ignored. I suppose that's what annoys me most of all.

 

My husband and I 😬 are now fighting from the bottom up and he's just written to my GP with a formal letter of complaint. This is being vetted by my lawyer at present. Sadly I like my GP but somehow we have to make them sit up and see the suffering they have caused. I better look for another surgery quick!

 

Even the PM sent my letter on to another office without comment! We are going to keep persevering until there's full recognition out there. We will win Fiona if we keep chipping away. 

[[lo...]]

Hi Beth

 

You just never know when the next letter might just capture someone's interest and it may come from the most unexpected of places.  There are so many issues, so many tragic stories out there that it is not surprising that your letters are ignored. I am not assuming I will hear anything from the Daily Mail but it is always worth a try. Are you nearly finished your book? I'd like mine to have a happy ending but I haven't reached that stage yet.

 

I hope your GP practice will continue to care for you.  If not, I hope you find another GP who is happy to take you on.  You have a legitimate reason for taking action so GPs should not hold that against you.

 

Hugs

 

Fiona 

 

 

 

 

[Guest [Ke...]]

My book is slow progress Fiona. It's about half way through. It will have a happy ending because I'm so much better but it's main purpose is to try and offer help to those still suffering. I get asked a lot of questions on my site and on the Facebook group so I'm going to take those that come up frequently to provide the second half of my book. It's all linked to my website anyway so mostly I take it from there. I do just a little when I feel motivated. xx

[[lo...]]

I am glad you are feeling so much better, Beth and glad that your book is progressing.

 

A little at a time is fine.  :thumbsup:

 

Hugs

 

Fiona 

[Guest [Ke...]]

I suppose my book is slow but sure. I think writing it gives me an outlet for my frustrations about all this. I've finished my own story and not hidden the facts or dummed anything down. I felt it was better to be up front and tell it as it really was. The second half is centred around my answers to the many questions I've been asked over this by grouping them into headings. For this reason I hope it won't be just a sob story but will give some positive guidance to all those suffering.

 

I know what I wanted to read and find help for when at my worst so I really need to get it down on paper before my memory tries to obliterate it all!

[[lo...]]

Hi Beth

 

I was thinking about you today and the fact that you managed to get all your 70 years worth of medical records.  I think that is amazing.  In a way it would be quite interesting to see my own.  I think I might have a look on the internet to see how I would do that.  I know there were two volumes of psychiatric notes because one psychiatrist told me he never bothered to read the first volume.  Hey I just remembered that just now.  If he had gone back to the beginning ...... ???

 

I find it very hard now to remember how ill I felt in the beginning.  During the very worst months I did not even keep a record of how I felt, I just felt too ill to do that.  I know I was extremely ill but recalling it is just impossible.  Just as well really I suppose.

 

Haven't heard any more from Caroline.

 

Keep up the good work.

 

Hugs

 

Fiona 

 

 

[[mu...]]

Looking forward it is you legal right to look at any records with your name on as these are legally your records.  Well in Britain it is. You cant photo copy them or anything ad this would breach your own data protection but you are 100% allowed to read  them. Xx

[[lo...]]

Thanks, Muckachi.

 

I have now written to my Health Board and to my GP practice.  I am just wondering how much the doctors actually recorded and how much of my notes hav been kept as the bulk of them will relate to the 1970s and 1980s.

 

They should prove an interesting read if nothing else.

 

Fiona  :thumbsup:

 

 

[Guest [Ke...]]

Just to let you know, Caroline Moore is now inundated with work 😁 I wonder why? 

[[lo...]]

Ah! That explains why I haven't heard any more.  all she needs to do is give the name of a solicitor in Scotland. 

 

Thanks for letting us know, Beth.

 

 

:thumbsup:

[Guest [Ke...]]

I've heard from Caroline today and she won't take my case as there's no certainty of a win. I'm leaving it for now, finishing my book and concentrating on helping others.

 

I will have to remove my petition as there isn't enough support to use it in presenting to anyone. Just as others before have tried and failed so did this one. It's a huge and horrible problem that's not going to go away until laws are changed in the UK or anywhere else. It us up to those of us recovering to do our best to spread the word and get noticed.

[[lo...]]

Hi Beth

 

I am so sorry that Caroline isn't going to take your case.  I hope you are not too upset about that.

I haven't heard from her but I am not too concerned about it.  I don't really want money and I don't know if legal action would achieve much else apart from some publicity perhaps.

 

I am sorry too that the petition did not take off.  Perhaps the best we can do is just try to help others in the same boat.

 

Hugs

 

Fiona 

[Guest [Ke...]]

I'm not at all upset Fiona. I didn't want the money or the stress really but did want recognition for all this. She has 4 other Benzo cases on the go 👍 so hopefully something will come out.

[[lo...]]

Hi Beth

 

I am glad you are not upset.  Yes, I would like some recognition too. 

 

It is interesting that Caroline has 4 more cases.  I do think it would be pretty stressful going through a court action.  The main thing is that you are feeling better - that is wonderful.  :thumbsup:

 

Hugs

 

Fiona 

 

 

 

[Guest [Ke...]]

I have so many sad stories on my petition that I really want to get it out there to those that can do something. I've decided to keep it going for awhile then possibly take it to the conference in September or my husband will. The more signatures to demonstrate the problem the better.

 

Please sign of you haven't done so already. Thank You

 

http://www.thepetitionsite.com/491/850/205/the-benzodiazepine-scandal/

[[ma...]]