How to get the Scottish NHS to actually help
April 6, 2023 9:25 AM Subscribe
I moved to Edinburgh Scotland about six months ago. I rely on an anti-depressant that is available off label only in the UK (bupropion). My GP wants me to switch medications. I do not want to go through a couple of depressive spells while we try to see what other medications may or may not work for me, as I already have one that does work.
How do I get an acknowledgement that keeping me on the antidepressant that I've been on for 20 years is a good thing and should continue?
(I still have 6 months worth of meds left, so I am not desperate, but I am at the point where I need to deal with things.)
My first hope was the private clinic I go through for ADHD meds, as the waitlist in NHS Lothian for ADHD prescriptions is 3-4 years right now. (My diagnostic stuff was all destroyed by being kept in a poorly seal and drained shipping container that caused all the paper to turn to mush. I've been telling people it was a house flood, which is easier.) They are not willing to write depression prescriptions.
So now it's either set up another arrangement with another private psychiatrist for a monthly prescription, or somehow get some results out of the £5000 I paid up front in NHS fees when I got my visa. My GP wants me to go off my meds, which will guarantee a depressive episode, then try to find another medication that works. I got her to say, that perhaps, if I tried several and months later I was still depressed, they might, maybe, consider possibly looking into prescribing me bupropion. I suspect that they'd first send me in for electroconvulsive therapy first, but I may be simply frustrated with everything at this point in time.
Bupropion's only on label use as an assistance to quit smoking. I've joked that maybe I should just take up smoking, but I am not quite that desperate yet.
I contacted one of the advocacy organizations for mental health in the UK (AvoCard) and they sent me a very sympathetic and useless reply email. (If I needed someone to help me figure out how to tell my GP I had depression, they'd be great. But for fighting through a Helleresque bureaucracy, that's not what they do.)
I found this policy on off-label medications, which leads to this form (word document). It appears I would need a doctor willing and able to fill this out and deal with things. Would switching GPs help or is this such a burden that it's not worth the hours on hold to switch to another practice in the area (I chose my GP because they were the only ones who were not restricting new patients, putting them on a wait list or requiring them to call in at exactly 12:47pm on Wednesday with the secret code)? Should I call up and ask how long I need to smoke for to get a prescription to see if it motivates them to help? Should I say "screw it" and just go and bite the bullet on paying for a second private psychiatrist?
(I still have 6 months worth of meds left, so I am not desperate, but I am at the point where I need to deal with things.)
My first hope was the private clinic I go through for ADHD meds, as the waitlist in NHS Lothian for ADHD prescriptions is 3-4 years right now. (My diagnostic stuff was all destroyed by being kept in a poorly seal and drained shipping container that caused all the paper to turn to mush. I've been telling people it was a house flood, which is easier.) They are not willing to write depression prescriptions.
So now it's either set up another arrangement with another private psychiatrist for a monthly prescription, or somehow get some results out of the £5000 I paid up front in NHS fees when I got my visa. My GP wants me to go off my meds, which will guarantee a depressive episode, then try to find another medication that works. I got her to say, that perhaps, if I tried several and months later I was still depressed, they might, maybe, consider possibly looking into prescribing me bupropion. I suspect that they'd first send me in for electroconvulsive therapy first, but I may be simply frustrated with everything at this point in time.
Bupropion's only on label use as an assistance to quit smoking. I've joked that maybe I should just take up smoking, but I am not quite that desperate yet.
I contacted one of the advocacy organizations for mental health in the UK (AvoCard) and they sent me a very sympathetic and useless reply email. (If I needed someone to help me figure out how to tell my GP I had depression, they'd be great. But for fighting through a Helleresque bureaucracy, that's not what they do.)
I found this policy on off-label medications, which leads to this form (word document). It appears I would need a doctor willing and able to fill this out and deal with things. Would switching GPs help or is this such a burden that it's not worth the hours on hold to switch to another practice in the area (I chose my GP because they were the only ones who were not restricting new patients, putting them on a wait list or requiring them to call in at exactly 12:47pm on Wednesday with the secret code)? Should I call up and ask how long I need to smoke for to get a prescription to see if it motivates them to help? Should I say "screw it" and just go and bite the bullet on paying for a second private psychiatrist?
I will preface by saying this suggestion is an ethical grey area, but mental health is one of those things I will bend many rules for.
So. You have 6 months of meds. Can you just... say you've gone off them and then in a month say you're having a depressive episode and let them prescribe it to you? Yes, you'd be lying by continuing to take the meds during this but honestly, this system is asking you to actively put your life at risk so they can meet some red tape requirement, so in my mind you are fully justified in not endangering your own life by spiraling into depression just to prove a point to the healthcare system.
posted by ananci at 9:42 AM on April 6, 2023 [12 favorites]
So. You have 6 months of meds. Can you just... say you've gone off them and then in a month say you're having a depressive episode and let them prescribe it to you? Yes, you'd be lying by continuing to take the meds during this but honestly, this system is asking you to actively put your life at risk so they can meet some red tape requirement, so in my mind you are fully justified in not endangering your own life by spiraling into depression just to prove a point to the healthcare system.
posted by ananci at 9:42 AM on April 6, 2023 [12 favorites]
Response by poster: In Your Shell Like - I have a letter like that and gave it to my GP when I first registered. I have another copy, which proved useful when I went to get ADHD medication, and could get more if needed.
posted by Hactar at 9:57 AM on April 6, 2023
posted by Hactar at 9:57 AM on April 6, 2023
I have no idea what the waiting list is like, probably horrendous, but could you try and get your GP to refer you to a consultant?
posted by knapah at 10:30 AM on April 6, 2023
posted by knapah at 10:30 AM on April 6, 2023
I don't know anything about the NHS (I'm in the US), but it might be worth your while to get onto the waiting list or make an appointment a few months out with a private psychiatrist, in case your NHS difficulties can't be resolved. Seems like specialists in the US often have very few open spots for new patient appointments and it can take a while to get in. You can always cancel if the NHS comes through.
posted by tuesdayschild at 10:38 AM on April 6, 2023 [1 favorite]
posted by tuesdayschild at 10:38 AM on April 6, 2023 [1 favorite]
I think with the nhs how it is right now you should follow the advice to pretend to go through their process of trying different things so that they arrive at prescribing it to you long term… even for quitting smoking eventually they’ll stop giving it to you… but go to a private gp if you need to for a private prescription… with your doctors note I dont think you need a psychiatrist consult which is much more expensive.
posted by pairofshades at 11:11 AM on April 6, 2023
posted by pairofshades at 11:11 AM on April 6, 2023
I don't know if this helps (and mods please delete if necessary), but a psychiatrist told me two months ago that Bupropion (Zyban) is not available here in the UK because of shortages. I have another appointment with her at the end of May in the hope that it may be available again then. So it's possible that no GP will be able to help.
In your situation, I think I would ask your GP to refer you to a psychiatrist. My experience is that they are more willing than GPs to prescribe against NICE guidelines. If they won't do that, I think I'd put in a complaint to the practice.
I would also contact other Scottish MH charities - Change Mental Health, SAMH, Health in Mind (there are probably others - these are just the ones I know about).
posted by paduasoy at 11:13 AM on April 6, 2023
In your situation, I think I would ask your GP to refer you to a psychiatrist. My experience is that they are more willing than GPs to prescribe against NICE guidelines. If they won't do that, I think I'd put in a complaint to the practice.
I would also contact other Scottish MH charities - Change Mental Health, SAMH, Health in Mind (there are probably others - these are just the ones I know about).
posted by paduasoy at 11:13 AM on April 6, 2023
Can you contact your previous prescriber, maybe lay in more supplies (example: Mark's Marine Pharmacy in Vancouver requires doctor's prescriptions, ships overseas; please check Scotland's legal req for importing pharmaceuticals for personal use) while working out the new system/waiting for a new GP appointment? 20 years of good results = don't run out because of bureaucracy. If I was in your situation, I might book with a new GP, and during the wait for that appointment, "quit" the medication, "turn to smoking to relieve the stress," and need to be re-prescribed bupropion. But given the shortage mentioned in paduasoy's answer, you might be looking to import anyway, so look into regulations for that scenario.
posted by Iris Gambol at 12:00 PM on April 6, 2023 [1 favorite]
posted by Iris Gambol at 12:00 PM on April 6, 2023 [1 favorite]
Oof, this sounds so frustrating. I'm not in the UK, but some ways through this might include:
- asking the overseas practice that issued you the diagnostic documentation destroyed during your move if they still have records of that documentation, and if so, if they could send you a new copy. It feels worth having this just for your own piece of mind; even if you later learn that the NHS isn't interested in seeing it, other future health providers might.
- having at least one more private-psychiatrist visit, both to ensure you have what you need medication-wise when the time comes and to ask about the form and procedure you found, especially to ask if they've heard other patients have been successful in negotiating with/through their GPs using that process. It may be the case that your particular GP was unwilling to work with you on the bupropion prescription for a few reasons beyond those they told you, reasons which might be opaque to you but clear to someone practising medicine: for example, did they read a new study about bupropion that would change their prescription habits ten minutes before you walked in? (I'm not saying this is a good thing, but it might explain what's happening.)
- checking the UK's electronic medicines database entry for bupropion here (there are two results - not sure which is relevant) and see if what's there, and thus the official UK line on what it does, matches the understanding you were gained from your own research, experience and conversation with previous providers; it may, again, be that something has changed that is making your GP reluctant or unwilling.
- trying a new GP if you assess that your GP's barrier is that they simply do not know you well, and have not seen, for years, how the drug helps you.
All that said: if you find you can't get anywhere, you can go through NHS Lothian's official complaint system, which is described here. If your complaint isn't upheld, you can ask for a reexamination by the Scottish Public Service Ombudsman, who evaluate how complaints to public institutions in Scotland are handled, conduct investigations, and come to decisions that can lead to your complaints being upheld. You can read how they do this at their homepage here and check this link to read all the SPSO reports in the "Health" category that contain the word "depression" here. Here's an example.
Good luck!
posted by mdonley at 12:51 PM on April 6, 2023 [2 favorites]
- asking the overseas practice that issued you the diagnostic documentation destroyed during your move if they still have records of that documentation, and if so, if they could send you a new copy. It feels worth having this just for your own piece of mind; even if you later learn that the NHS isn't interested in seeing it, other future health providers might.
- having at least one more private-psychiatrist visit, both to ensure you have what you need medication-wise when the time comes and to ask about the form and procedure you found, especially to ask if they've heard other patients have been successful in negotiating with/through their GPs using that process. It may be the case that your particular GP was unwilling to work with you on the bupropion prescription for a few reasons beyond those they told you, reasons which might be opaque to you but clear to someone practising medicine: for example, did they read a new study about bupropion that would change their prescription habits ten minutes before you walked in? (I'm not saying this is a good thing, but it might explain what's happening.)
- checking the UK's electronic medicines database entry for bupropion here (there are two results - not sure which is relevant) and see if what's there, and thus the official UK line on what it does, matches the understanding you were gained from your own research, experience and conversation with previous providers; it may, again, be that something has changed that is making your GP reluctant or unwilling.
- trying a new GP if you assess that your GP's barrier is that they simply do not know you well, and have not seen, for years, how the drug helps you.
All that said: if you find you can't get anywhere, you can go through NHS Lothian's official complaint system, which is described here. If your complaint isn't upheld, you can ask for a reexamination by the Scottish Public Service Ombudsman, who evaluate how complaints to public institutions in Scotland are handled, conduct investigations, and come to decisions that can lead to your complaints being upheld. You can read how they do this at their homepage here and check this link to read all the SPSO reports in the "Health" category that contain the word "depression" here. Here's an example.
Good luck!
posted by mdonley at 12:51 PM on April 6, 2023 [2 favorites]
It's hard to find NHS Scotland information on prescribing, but the two English NHS resources I have seen suggests that off-label bupropion for depression can only be prescribed initially by a consulting psychiatrist and require the patient to have tried two other antidepressants first. This matches the majority of experiences people report online, including in Scotland.
Usually consultant recommendations for prescriptions would then be passed over to your GP who would continue the prescription, but if it's unlicensed, your GP is under no obligation to continue to prescribe. In that case, the prescription would probably need to be continued by a community mental health team.
There's probably little point in shopping for an NHS GP to try and get one to prescribe it. Either ask for a referral to a consultant psychiatrist (which your GP may be reluctant to give), or look for a private provider (GP / psychiatrist). If you're looking for someone private, then I would explicitly ask whether they will prescribe bupropion if it's appropriate.
posted by plonkee at 1:10 PM on April 6, 2023 [1 favorite]
Usually consultant recommendations for prescriptions would then be passed over to your GP who would continue the prescription, but if it's unlicensed, your GP is under no obligation to continue to prescribe. In that case, the prescription would probably need to be continued by a community mental health team.
There's probably little point in shopping for an NHS GP to try and get one to prescribe it. Either ask for a referral to a consultant psychiatrist (which your GP may be reluctant to give), or look for a private provider (GP / psychiatrist). If you're looking for someone private, then I would explicitly ask whether they will prescribe bupropion if it's appropriate.
posted by plonkee at 1:10 PM on April 6, 2023 [1 favorite]
Not sure about present situation but there was a supply issue:
Thursday 1st December 2022
Department of Health and Social Care (DHSC) has issued a medicine supply notification for Bupropion (Zyban®) 150mg modified-release tablets.
MSN/2022/100
Tier 3 – high impact
Date of issue 1st December 2022
Bupropion (Zyban®) 150mg modified-release tablets will be out of stock until further notice.
And;
On 1st December 2022 GSK placed an immediate hold on the batch release and distribution into EU markets (including the UK and Switzerland) of Zyban (bupropion hydrochloride) 150 mg prolonged release tablets.
GSK has been reviewing its manufacturing processes for the potential presence of nitrosamine impurities. GSK conducted testing and the results indicate there is the potential for the presence of nnitroso-bupropion.
GSK has initiated a root cause investigation is determining the best course of action. At this point it’s not possible to provide an indication of timings for the Root Cause Analysis’ completion – this is due to the complexity of the investigation. GSK will provide an update when available.
posted by yyz at 1:20 PM on April 6, 2023
Thursday 1st December 2022
Department of Health and Social Care (DHSC) has issued a medicine supply notification for Bupropion (Zyban®) 150mg modified-release tablets.
MSN/2022/100
Tier 3 – high impact
Date of issue 1st December 2022
Bupropion (Zyban®) 150mg modified-release tablets will be out of stock until further notice.
And;
On 1st December 2022 GSK placed an immediate hold on the batch release and distribution into EU markets (including the UK and Switzerland) of Zyban (bupropion hydrochloride) 150 mg prolonged release tablets.
GSK has been reviewing its manufacturing processes for the potential presence of nitrosamine impurities. GSK conducted testing and the results indicate there is the potential for the presence of nnitroso-bupropion.
GSK has initiated a root cause investigation is determining the best course of action. At this point it’s not possible to provide an indication of timings for the Root Cause Analysis’ completion – this is due to the complexity of the investigation. GSK will provide an update when available.
posted by yyz at 1:20 PM on April 6, 2023
Best answer: I would speak to SAMH.
You can ask your GP to refer you to a (NHS) consultant psychiatrist but there is no guarantee they will agree to it; mental health resources are very tight.
I wouldn't bother changing to another NHS GP practice. Massive faff and quite unlikely to find someone who wants to break NHS rules. But making an appointment with a different GP in the same practice and seeing what they say - no need to spell out all the backstory - is a low-chance-of-success but zero-downside option.
NHS complaints process is an option but tbh it sounds like they are following their own processes here and no chance is a complaint getting investigated and resolved before your meds run out.
Speak to SAMH but in your position I would be looking into private GP options and asking about their approach to prescribing unlicensed medication and if they take a different approach from the NHS.
posted by Klipspringer at 1:28 PM on April 6, 2023 [1 favorite]
You can ask your GP to refer you to a (NHS) consultant psychiatrist but there is no guarantee they will agree to it; mental health resources are very tight.
I wouldn't bother changing to another NHS GP practice. Massive faff and quite unlikely to find someone who wants to break NHS rules. But making an appointment with a different GP in the same practice and seeing what they say - no need to spell out all the backstory - is a low-chance-of-success but zero-downside option.
NHS complaints process is an option but tbh it sounds like they are following their own processes here and no chance is a complaint getting investigated and resolved before your meds run out.
Speak to SAMH but in your position I would be looking into private GP options and asking about their approach to prescribing unlicensed medication and if they take a different approach from the NHS.
posted by Klipspringer at 1:28 PM on April 6, 2023 [1 favorite]
Best answer: I'm British and I have experience of the NHS mental health system.
GPs will not prescribe drugs for a condition unless the NICE guidelines say they can prescribe that drug for the condition in question, because they can get in serious trouble (up to and including being struck off or facing criminal charges) if they do so and the patient has a negative reaction.
Specialist consultants like psychiatrists have much greater leeway, and if a (British) psychiatrist prescribes it on a repeat prescription, your GP will provide prescriptions for it regardless of NICE guidelines because the consultant is responsible for your treatment.
Tell your doctor you have depression, you need a clinical diagnosis and mental health support, and they should refer you. Prepare to wait for up to a year for an appointment though, the mental health system here is underfunded and under resourced.
Good luck.
posted by underclocked at 1:32 PM on April 6, 2023 [3 favorites]
GPs will not prescribe drugs for a condition unless the NICE guidelines say they can prescribe that drug for the condition in question, because they can get in serious trouble (up to and including being struck off or facing criminal charges) if they do so and the patient has a negative reaction.
Specialist consultants like psychiatrists have much greater leeway, and if a (British) psychiatrist prescribes it on a repeat prescription, your GP will provide prescriptions for it regardless of NICE guidelines because the consultant is responsible for your treatment.
Tell your doctor you have depression, you need a clinical diagnosis and mental health support, and they should refer you. Prepare to wait for up to a year for an appointment though, the mental health system here is underfunded and under resourced.
Good luck.
posted by underclocked at 1:32 PM on April 6, 2023 [3 favorites]
Best answer: You are very unlikely to get it from anyone but a consultant off-label. You are going to need to go private and you should do that sooner rather than later. Either that or fill overseas, as suggested.
posted by DarlingBri at 2:03 PM on April 6, 2023 [1 favorite]
posted by DarlingBri at 2:03 PM on April 6, 2023 [1 favorite]
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posted by In Your Shell Like at 9:39 AM on April 6, 2023