At my wit's end

Youre probably right there Misssy

Too right!!

Well done.

I know I'll get told off for saying this, because not everyone can be forthright, but, it's amazing what you can achieve by say no, I don't accept that and keep pushing. It seems sometimes it's easier to give someone what they want than trying to fob them off.

Did the info that Joanna sent you help you figure out who should be responsible for writing you the Rx? 

No, Joanna was a great help, but it was a battle with the alcohol clinic to give me an appointment next week - then a further week of drink diaries - before I could be prescribed Nalmafene. For me, it's a very long winded process... I hate to think of someone in a worse situation than me and the damage they'd cause themselves waiting for a prescription.

Able to get my drinking down to 13 units tonight with a hell of a lot of willpower. A week on Wednesday still feels like a decade away - especially with the weekends Inbetween, but I'll carry on.

You've done the hard bit, just bide your time.

Be careful that you don't reduce your drinking too much over the next 2 weeks.

I know that sounds crazy, but you don't want them looking at your diary and saying 'so, you can do it on your own and don't need the medication - counselling will be better for you to help you maintain this reduction'.

This is going to sound nuts, but I was actually worried that I was drinking too much and they were going to say I wasn't eligible... You can't win can you? Haha

Heads they win, tails you lose.

It's all a game. At least if they come to this forum, they get to see that it isn't just them and everyone has to play the game, however idiotic it is.

I feel sorry for the people who don't use the internet, or don't stumble across a forum like this. It must be very difficult, going it alone, at least you get prodded onto the right path here.

It's a fine line....

You need to be as close to the NICE guidelines as possible, but if you show you have dropped from a higher level to that level it might go against you.

You know you are reducing which is great, but I think you need to NOT show such a big reduction.  The criteria on the NICE guidelines say:

For a woman, drinking more than 5 units a day (UK units).

But then it goes on to say:

Nalmefene should be initiated only in patients who continue to have a high drinking risk level 2 weeks after initial assessment.

 

Thank you Joanna, will bear this in mind when completing my diary. Although the lowest I've got it down to was the 13 units, one day I had 27.5 (hence why I thought too much).

Either way I'm still drinking everyday, just hope they will still prescribe.

Thank you.

Totally agree, without this forum I'd have never have known about the positive impact Nalmefene can have, I'd still be hoping for a miracle.

I am just wondering if this forum could look at a government petition requesting  the government to launch an awareness update to GP's and other 'specialists ' or even maybe considering an investigation into why the NICE guidelines are not being fully implemmented nationally. 

Ray

I agree, but not sure that this site would feel able to campaign on such an issue. Nothing wrong with individuals who use the forum doing something and the moderators may be ok with you posting a link to a petition. It is worth sending a private message to Emis Moderator who could advise you. I am not sure what restrictions they are bound by.

I was thinking probably on Facebook and Twitter Paul. I don't feel qualified to word such a petition but wondered if maybe you and Joanna could possibly ?

Ray

It's a good idea, Ray. Joanna and I speak often about raising awareness and we certainly need to get clinicians to sit up and take note of recent treatment options. Everything is a hard slog though because there are too many prefer to remain 'deaf' to any change. I'm sure she will see this and have a view on it. She is currently working on a project to make people aware of what the situation is in their local area but this is certainly a future possibility.

All ideas welcome, Ray :-) 

The main issue I would see with a petition would be the fact that don't they need 100,000 signatures for it to them be discussed?  So many are affected by AUD, but so few know about medical options for it, that I am not sure we would be able to get that many signatures.

There are a lot of irons in the fire to continue raising awarenses, so to speak.

C3 Europe are about to launch a new service specifically to help those trying to get this on the NHS (that will be in the next few days).

There is a TEDx talk on TSM being filmed in late May.

And we are also looking at trying to get an audio version of Roy Eskapa's book up and running.  Asked Roy about this yesterday and he is checking with the publishers about who would have the rights to this.  He has the rights to the written version, hence why he allows us to send the PDF versions out for free.

Some other things on the backburner too!

I have my 3rd meeting with alcohol services on Tuesday and have been toying with the idea of telling them I'm taking naltrexone.Baclofen really didn't go down well with my gp so that's why I'm loath to do so.But this time I'm taking a legitimate alcohol drug with a proper prescription.I will get the result of my latest blood test then and if that's ok I might try to push the fact that I'm entitled to at least an evaluation for Nalmefene

Personally I would, but that's just me. I'd make sure I told them in no uncertain terms (in case they start down the self medication, tsk, tsk) that you have a prescription from a doctor and are taking the medicine under his direction - write this down if you that you may not remember this or they try to put you on the back foot.

I would also say (couch it in a nice way) that between your GP and them, you have been let down and because of this, you have had to go to a private doctor. Then say, but you would prefer to go through the process with their help, but that does mean medication to help you through it.

The trick is, to portray a poor little alcoholic/heavy drinker, that has been failed by the system and has had to seek outside help, but you would prefer that, the ARC handled the whole proces rather than also having to go to see a doctor as well.

Ask for the results of the blood tests straight off, it is your blood and you are entitled to know the results. And let them comment of them and then take it from there, depending on their response.

This is what I really want to do,I must just try to stay strong and not be bullied or swayed to just go along with there treatment

Before you go, read the NHS Constitution.  It will boost your confidence and you will know from it that you are only asking for what the constitution pledges the NHS will provide.  Maybe print it out and hightlight a few of the pledges..... which include:

- You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.

- You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.

-

Then you need to write it down on an A4 pad, because you will forget it all in an instant when you become a rabbit in the headlights and they start saying why are you bothering them if you are going private.

To which you say, I hoped my GP would help me, but he didn't, I hoped you would help me, but you didn't listen to my requests that I needed medication to come off of it/calm it down. The private doctor understood the problem, but I am still coming here and hoping now that you will takeover from where the doctor helped me and prescribe me medication as well as having the one to one meetings.

Use me as an example. Say, I have a friend, who needed to stop drinking quite seriously. His GP gave him diazepam for his initial detox. He then went to an alcohol recovery centre, explained that he needed Campral to stop the cravings. They did their first case worker meeting where they took details, the next meeting was with the nurse for blood tests and a list of other prescriptions being taken and general medical history. Then the following week he saw the prescribing doctor who issued Campral.

He still goes to the one to one meetings, but the medication has helped with the anti-craving and stopped him going back on the alcohol.

Just say, you want to be helped like that, in the same way. Of course, it's not what you say, it is how you say it. Once anything becomes confrontational, the battle is lost and the shutters come down.

Push and plead is the best stratetgy. tell them what you want, then ask them very nicely what you want, it's a balancing act.

Thanks RHGB and Joanna,very helpful advice and I will follow it and hopefully get somewhere

Re: Petition

If the basic facts are laid out for the average reader to understand then asked to sign a petition . ( Government petitions are often spread through Facebook and Twitter ) I often don't understand the facts until I read through the petition before signing ( or not )

Ray

Will have to look further into this.

From your experience, do you think people may be reluctant to put their name to something relating to AUD?  I know many people are very private about this type of thing. Sadly, the idea that it might indicate to one of their FB friends that they may have a problem does seem to be a stigma that is hard to overcome...

It is a good point but depends on how it is worded. This is about the right to receive care and treatment as you have said. I will check it out but I don't think it is made public on social media that you signed. Even if it is it is not saying you have a drink problem. I think it would create more awareness generally. The NICE guidelines I believed were originally aimed at people like me and BK522. We began drinking in the evenings after work, still keep down often responsible jobs, don't have physical withdrawals and don't wake up ina morning needing a drink, many of us don't go on binges. That type of drinker are out there in the uK in the hundreds of thousands. I dare say many a member of parliament fit the criteria but don't know about the nice guidelines. 

It could be put as if you or you know of someone or just think it is plain wrong that GPs are not fully aware of their responsibilities in this treatment you may wish to support this petition.

Ray

Excellent, thanks.

I am waiting for feedback from the Government petition administartors about the possibility of confidentiallity on social media. May take a few days to respond. I should add though that I signed a petition this morning and the only thing that happened on Facebook ( after clicking on the link they send in an email ) is that the total clicked forward.

Ray

Hi all,

Re petitions:

I haven't read all of this thread but we don't allow links to petitions in the forums but see below for what we advise when we do get such requests.

For anyone wishing to post these - we recommend you post directly onto our Facebook page wall (http://www.facebook.com/patient) or if you use Twitter, you can tweet details to us (https://twitter.com/patient) and we can retweet your message.

Regards,

Alan

Thank you

How was your appointment?

Hi Misssy2 on my second day of Nalemfene today. Yesterday felt out of it on my first tablet, still managed to drink a bottle of wine (but I guess a lot better than my usual 1.5 - 2 bottles, I have to remember it was my first day on the meds, it's going to take a while before its in full swing and I reap the full benefits). Awful hot sweats and hardly any sleep during the evening, had to go to work today, but lack of sleep has always been a problem of mine so nothing I couldn't deal with.

Today I felt sick after taking tablet and have only bought one bottle of wine to drink. Feeling positive about things though, I can see how the differences will begin to manifest and help bring a positive change. I certainly don't feel like gulping down wine (which I normally do).

Thank you for checking in on me.

How are you doing?

So in a sense it is working for you.  Maybe after a new routine you will become used to it....and be able to feel better while taking the pill and drinking.

​I am doing well.  Thank you for asking....Well at least in the drinking aspect of my life...5 weeks this Sunday.  I am however on various new drugs for various medical conditions....The new one I took today 3 horse pills for suspected "Colitis"...is making me feel lethargic...and yucky.  BUT if I think about it...the yucky feeling is nothing compared to ME drinking.