Nalfamene (Selincro) - desperate to try it to help reduce my drinking

Posted , 12 users are following.

I've seen other discussions on here about nalfamene and the difficulties getting it to help with cutting down drinking, but many seem to be older closed discussions, so apologies if I'm asking questions that have already been answered elsewhere.

I am desperate to try this Nalfamene to help me reduce my drinking but keep coming up against obstacles. Its now nearly 2 months since I saw my GP to request this and I'm no further forward. She referred me to a local alcohol service saying they would assess and prescribe this. i had my first meeting with them this week but came away disappointed, the person who interviewed me said she was not aware of their service prescribing this medication and only talked about detox and acamprosate,

Sadly I also came away feeling very demotivated and wanting to withdraw from their service partly because of the content of the letter she gave me to get bloods from my GP, but thats another matter.

I'm hoping someone can help me with the following:

Does anyone know if Selincro is available over the counter in Spain?

If it is, are any questions likely to be asked at the pharmacy in Spain? (I ask because its a friend who is going there and i was hoping to ask them to get me some if its available)

Please can anyone suggest anything else I can do to try to get this medication?

I've already tried to make 3 online purchases, twice from Pharmacy4U in the UK, but on both occassions their online systems failed, and the other two just looked too dodgy when they asked for money to be sent by wire transfer, one to the USA and the other to somewhere in Oceania.

I keep asking myself why is it so difficult to get to try this medication, its so frustrating because I desperately need to cut down and it sounds like this could help, I have the motivation but feel this slipping away with all the obstacles.

Thanks in advance for any info, help or advice anyone can offer.

D

 

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  • Posted

    A few things. Most GPs won't prescribe medication to help with alcohol. Pharmacy2U and similar online pharmacies usually say no in my experience and that of others that I have read here. You have to be wary of getting it overseas and you have to know the the reputable pharmacies - of which there aren't many.

    On the flipside, it is a bonus that your counsellor knows of acamprosate and would be willing to go down that route. Most are oblivious to all alcohol medications. The most straight forward way to get nalmefene is through the alcohol services charity that you are attending. They will not prescribe anything until you have had standard blood tests to check that you are in decent health.

    You have a right under the NHS to see the prescribing doctor at the alcohol services charity and request nalmefene, which is approved by NICE/NHS. Unless your bloods show health problems. If Joanna pops her head into this thread, she can show you a copy of the paperwork that you can show to the alcohol services charity that explains your right to see the doctor.

    It can be a bit like treading through treacle at times, but you do get there.

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    • Posted

      Hi there, many thanks for your response, some really useful info there, i have another appointment with them in a couple of weeks so i will raise it again armed with more info thanks to you and others on here.

      Thanks

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  • Posted

    Hi David,

    The NHS produced a report just last November that strongly criticised the lack of interest in treating patients with nalmefene.  The basic idea is that it is for mild to moderate dependency and along with the type of support that would also be provided to those who wish to stop smoking, it was intended for prescribing by GPs to those who didn't have such a strong problem that needed dealing with by the specialists at the alcohol recovery centres.

    However, GPs never received a budget to provide the aftercare/support element, so many GPs were up in arms - saying they were neither receiving money to do it, or felt comfortable supporting those with alcohol dependency issues - and so many local health authorities decided that the alcohol recovery centres should assess, prescribe and support (because they receive the budget to do this).

    What is very depressing for us patients is that the entire thing got stuck between a rock and a hard place - GPs wouldn't deal with it, and as far as the staff at alcohol recovery centres are concerned, they 'think' they only deal with severe dependency.

    Any news about nalmefene was just NOT passed to the people who needed to know.

    If you wouldn't mind, please let me know the town and county you live in and I will look up the precise guidelines that your local NHS authority have for nalmefene.  This will tell you who they have appointed to assess and prescribe nalmefene.  Once you have that evidence printed and in your hand, you can book an appointment to see the correct person.  If you are not happy saying publically the town and county where you live, feel free to PM me it and I will PM you back with the correct information.

    Joanna

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    • Posted

      Hi Joanna, many thanks for your response. The service and my GP are in Leek, Staffordshire, which comes under Staffordshire Moorlands local authority.

      Thanks

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    • Posted

      Thanks for this David.

      I'm doing the research for you now.  Leek is in the NORTH Staffordshire area, yes?

      And was it an organisation called One Recovery that your GP referred you onto, and that you had the appointment at? 

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    • Posted

      No need to answer my above questions, I've found it for you now.

      Yes, Leek comes under the North Staffordshire NHS Clinical Commissioning Group (CCG).  All this means is that once instructions on approved medications come down from the NHS, the North Staffs CCG commission the services to the relevant organisation/physician that they feel is best suited to provide the medication.

      In your case, the North Staffs CCG have specifically decided that - because of the aftercare required with nalmefene - the most appropriate physician to assess and prescribe, if medically suitable, are the specialist doctors who are in situ at your local alcohol recovery service called One Recovery.

      I will PM you the exact link for you to print off and take with you to an appointment, as I cannot put the link on here, but I have included a screenshot of what you need to print out.  In the link, it's on page 8 of 9.

      What I suspect has happened is what I have heard of many, many times now.  The keyworkers and basic staff at these alcohol recovery places have simply not been informed that nalmefene exists, and what it does.  They are used to dealing with severe dependency.  Though, personally, I don't feel this is a valid excuse..... if I worked in the alcohol recovery sector, I would be interested in keeping up to date with all advances in the recovery area.  Nalmefene was approved for use on the NHS back in November 2014, but clearly the person you spoke to must've been living under a rock!!!

      Now you have initially been to One Recovery (which I am assuming is where you went) you have every right to contact them back and ask to see the doctor in situ there - to discuss medications that can help you deal with you alcohol issues.  You have the evidence in your hands now that your local NHS health authority have instructed them to assess patients for nalmefene!

       

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    • Posted

      Apologies I've been away from my computer, but many many thanks for your help Joanna. I'll have a look at the report and information over the weekend.

      Also I dont know if you've seen rayboy250 's comment below, if possible please can you send me a link to his paper.

      Thanks

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  • Posted

    David, the NHS area you're in has a big impact on just how one gets ahold of Nalmefene or Naltrexone on NHS. Joanna can help you determine that, or if you want to PM me the NHS area you're in, I'll take a shot at it. 

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  • Posted

    David, did you come across my experience. I wrote a short paper on it as one of the first people to seek help from a GP with regards Selincro. If you haven't I am sure Joanna would provide you with a link.

    Ray

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    • Posted

      Hi Ray, thanks for your response, I'm in contact with Joanna now so I'll ask her for a link, I'd be very interested to read it.

      Thanks

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  • Posted

    Hi David,

    Hope you managed to get Selincro and doing fine now!

    Came across this few weeks ago and was trying give it a go. 

    I was very disappointed and a bit shocked how people who supposed to provide you support and are paid for it (!) are disinterested and even rude! I was trying to get some help from my GP and local alcohol support groups, but they just wash their hands off and send you from one place to another. 

    Following your discussion, I would really appreciate if someone help me out here.

    Thank you in advance!

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    • Posted

      Hi Tom! 

      Joanna can help guide you through the hoops wrt getting Selincro or Naltrexone in your NHS area. Sometimes you have to educate the responsible parties and stand on your rights, but Joanna can help you determine who should be doing what in your NHS area and perhaps even tell you what steps to take when they are ignorant about treatments that you are entitled to. 

      You can send her a private message by clicking on the envelope by her name in her post above. 

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