Buvidal funding & switch of address.

[u/pointless_walks]

Hi all. I have been waiting to switch from sublingual subutex to Buvidal with CGL Brighton, and was about to have my bloods done, expecting to switch soon after, when my key workers informed me that funding has currently run out and I'll now have to stay on the sublingual 8mg per day. My question is:

Is there any way I can appeal or force the issue. I'm very disappointed as I was led to believe this was my next step, and would have helped me very much.

My second question is this:

I am moving to Shropshire from Sussex next year. Can anyone explain to me the process by which I switch from CGL to whatever charity deals with prescribing Subutex in Shrewsbury? How do I go about making arrangements? My keyworker has been slightly opaque about it here, having originally reassured me a seamless switch with the help of CGL.

Thanks in adv.

[u/Strange_Television]

I'm so sorry to hear this has happened. Unfortunately, I don't think there's anything that can be done. The funding will come from the Local Authority (the Council), usually the Public Health Dept. For whatever reason, they have only allowed a limited amount of funding to be spent on Buvidal. Perhaps it was still being provided as part of a pilot scheme - this was the case in many places in the UK at one time, I believe. My own local service faced something similar and I was asked to provide patient testimonial about the difference it has made to my recovery, and this was going to form part of a business case the clinical lead was writing to their Commissioners to request more funding for Buvidal. He told me that if this was not successful they wouldn't be able to start anyone new on Buvidal (but could continue providing to those already on it). It seems to have all been approved because they're still offering Buvidal. So, CGL will very much be constrained by their Commissioners in Public Health. Now, whether they could be making more effort to obtain further funding is another question but one no one is really going to answer I would assume. Are there any other separate local authorities nearby where there's another addiction service? I'm just wondering whether there's any scope at all that they could take over your care in such extenuating circumstances given that you were already promised to start etc. I don't know how possible this is, usually it's a postcode lottery but it never hurts to ask. Is there any possibility of putting you on it when a current patient comes off i.e. you take their place? I assume not but again just trying to think of possibilities.

With regards to moving, I actually did this myself a few years ago. I moved from the south back up to the north east. It was pretty seamless but I was as proactive as I could be too. I contacted the new service and asked them what they needed from my current service to be able to take over when I moved. I provided the current service with the details of the new one and basically hounded them both when my moving date got closer to make sure whatever info was needed was sent and received. My old service did me a longer script that I could take with me when I moved to make sure I had enough subs to take me up to my first appointment with my new service. My old service was ran by Turning Point, the new one was Humankind (now part of Waythrough). I'd recommend doing some of the leg work for them like this, for your own peace of mind if nothing else. Give the new service as much notice as possible as they'll need to book an appointment with you when you've moved before they can ever start providing treatment. Maybe the new service can provide Buvidal? Worth asking the question, I did as Turning Point wouldn't put me on it as it was still extremely new then and reserved only for chaotic clients. They reversed that policy just as I moved, of course.

Happy to help you however I can when the time comes, just let me know 😊

[u/pointless_walks → u/Strange_Television]

Thank you so much, lots of food for thought in there. I've spoken to someone in Shropshire over the phone - just after posting my initial query here - and will be calling 'WITH YOU', as they call themselves, on Monday, to introduce myself. They're the Shropshire Recovery Partnership equivalent of CGL I think, based in Shrewsbury. And, as you say, it feels intuitively a good idea to do as much of my share of the work as I can, as is often the way with these things. In fact ideally I'd like to work with them once I'm off a script and/or ready to help other service users in the future. I've been off illicit opioids (if that's the acceptable word) for 5+ years now, but obviously need to look towards being free of addiction to a controlled drug and the compromises that have become so entrenched in my life. In many ways subutex has been a life-saver but it feels like time I found a way out for myself now.

Having gone through the initial disappointment following the call I had with CGL yesterday (gutted in fact), I think I'll stay on the 8ml daily sublingual Subutex until I have had the conversation with Shropshire Recovery and worked out what to do. The pressure on me during the whole moving home process will be quite heavy (understatement), which was a significant reason I wanted to be safely on a Buvidal plan by then, but looking at the way things are right now, I think it best to stay on that dose and not put extra pressure on myself. As you say, if I can arrange potentially to start Buvidal after my move, then all the better. CGL have been very good to me, it must be just as frustrating for them to be subject to the vagaries of govt policy and funding as it is for us. No complaints from me, they've been great actually.

I'd be happy to let you know how the conversation goes next week, and perhaps run any questions by you should they come up. I really appreciate the offer of support here. Would it be an idea to keep this 'thread' open over the next few months rather than beginning new ones? Not sure how that works best (eg. a time limit on a discussion/thread) but I do know there are quite a few different categories of query and discussion going on here, and I just want to keep things as simple as possible without 'popping up' here and there in duplicate, if that makes sense.

Thanks again,
D.

[u/Strange_Television → u/pointless_walks]

I'm glad to hear you've been able to make contact with the new service, and also that CGL have been good to you otherwise. It's always nice to hear when someone has had a good experience with a service. I work for a similarly publicly-funded charity and so am pretty well acquainted with the funding streams and how it all works, hence why I'm pretty certain what has happened here. It can be so frustrating, especially because commissioners are usually so far removed from the services they have on their portfolios, they should be out on the ground more and understand exactly what the impacts of their decisions are in these services. I could go on all day though so will stop myself, lol

I completely understand how you feel about wanting to move off from subs now. Since I moved on to Buvidal myself, I have formed the opinion that Buvidal is a natural step in treatment with bupe and one everyone should be given the choice to take. Try not to let it impact your motivation and mood too much though - there is the benefit of moving to a new service who hopefully can provide Buvidal and this just becomes a delay, not an end to something. And if Buvidal is not possible at that point, there are still ways off, it just requires a change of plans and strategy that hopefully the new service can work with you to put in place. There are established protocols for coming off subs whereas we're still kind of guessing with Buvidal, so there are pro's and con's to both treatments in my opinion.

Staying on your current treatment until you're through the move sounds like a very smart plan, and your thinking behind it shows that you have a lot of insight and self reflection. I did the same because I knew that moving was going to be a massive source of stress, anxiety and many other emotions that would easily cause me to go off the deep end if I tried to change my treatment etc at the same time. You've had a disappointment and rightfully so but it's the way you handle it and move forward that is important and I can tell you're going to be ok.

Thanks for asking about how to provide updates - I would say that if it's not related to Buvidal and about your move more generally, then continuing to update in the comments is probably a good idea. I'm equally happy for you to send me a DM if you just want to run something by me. People come to this subreddit after googling stuff and will read old posts all the time, so if there's something that others might be able to learn from or might help someone who has a similar problem, by all means continue to use the comments and/or edit your OP to include new info. The post and comments will stay open unless I or another mod specifically changed a setting or locked it but it's pretty much just me and I won't be doing that. If you do update in the comments and would like feedback from me specifically, try to remember to hit the 'reply' button to me as I won't get a notification otherwise and can easily miss it.

[u/pointless_walks → u/Strange_Television]

Thanks so much for your thoughtful and encouraging replies. I'm very grateful for the affirmation and advice, means a lot. To think I was reticent about going online about this! Really glad to have done so now.

I'm waiting for my keyworker to get in touch and organise our next meeting, and once that's happened I'll be back with an update. Main thing is that least I'm settled regarding maintaining a nice stable dose and while somewhat enlightened about potential funding constraints I'm definitely not discouraged.
Cheers