Medical Marijuana / cannabis

Hi fiddlesticks,

It’s Megan here from Macmillan’s Online Community team. I came across your post and wanted to share some information with you that may help answer your question whilst you are waiting for others to share their personal experiences with you.

It’s good to see you have found the Online Community as it can be a great source of support when you want to connect with others who are in a similar situation to you. Our groups are safe and supportive spaces to ask questions, chat to others and share how you are feeling.

Information provided via our Community is not intended to replace or substitute advice and services from professional experts, but rather to provide signposting towards further information and support. With this being said, I hope the following can be helpful.

As you have questions about private prescriptions for medicinal cannabis, you may find it helpful to speak to the Nurses here at Macmillan. They can provide trusted cancer information about alternative and complementary treatments. If you want to post a question in our Ask an expert section here on the Community or contact them on the Macmillan Support Line, you are very welcome to.

The Macmillan Support Line is open from 8am to 8pm every day and to get in touch, please call 0808 808 00 00. There is also the option to send an email or use live webchat during the opening hours.

It sounds like you have been doing some research so you may have come across this page already, however, there is more guidance on the NHS website about medicinal cannabis.

I hope the above information helps you find the guidance you are looking for and if you need any help using the Online Community, please don’t hesitate to get back in touch. You can email community@macmillan.org.uk or send another private message to the Moderator account.

The NHS are very reluctant to allow medical cannabis, even when warranted and proven to help with side effects current treatments do not help with.
The NHS will only consider it for nausea when 2 drugs have not worked - since nausea is not my issue, I wouldn’t be eligible that way. But am fully aware that it would help with my situation.  
This is why I am looking at going the private route- I just wanted a bit of hive mind information about this from other individuals who had personal experience with this. I know there are plenty of people who do this legally and get great benefit from it. Hopefully, some of those people are on here. 

I'm legally prescribed medical CBD and THC through a private clinic in the UK.  Not for cancer though.  I take it for chronic pain and insomnia due to a benign condition.  It is considerably more expensive than the prices you've given. I agreed to be involved in the clinics research programme which means you get the products with some discount but it's still costly.  I have a three monthly review but any problems and I can contact them if need be before then. If you're thinking of going down this route research it well beforehand to ensure the company you use is reputable.  Much of what's sold over the counter isn't worth taking.  I had major surgery in August on the other side of the country in an NHS hospital where they were happy to prescribe my THC and CBD.  It was a simple process there as the clinic gave me information to take in with me giving prescribing guidelines.  I was readmitted with complications nearer to home where they wouldn't prescribe it but they couldn't prescribe half of my NHS meds either so it wasn't just a cannaboinoid thing there.

Am just wondering what you were advised regarding the difference between over the counter CBD and CBD from the private clinic? There are some reputable firms with high CBD levels and low THC. Do you know what the differences are please? I know that at too high doses CBD causes liver damage and some other side effects too, so had opted for a known dose. Do the clinic offer low THC (the addictive part) CBD oil to you? 

I'm in the UK.  I had briefly tried CBD from the most reputable online supplier a few years ago but had never purchased it over the counter because at that time what was being sold on the high street wasn't worth buying due to lack of active ingredients. I decided to join the private clinic as I would know exactly what I was taking and you're regularily reviewed.  I initially had a zoom meeting with a Pain Consultant and we discussed my health and the medication I was already on. That's then discussed at a multidisciplinary meeting to decide whether you'd be a suitable candidate or not.  If you're approved then you are given a prescription that's most likely to help manage your symptoms.  In my case it's chronic /neuropathic pain and chronic insomnia.  There is a wide range of different doses and types prescribed.  My prescription details are all easy to view online and strength, how often to take etc.  That's also all clearly marked on the bottles or packaging your medication is supplied in just the same as it would be if collecting an NHS prescription.  Patients are reviewed at least every 3 months, more often if you request an earlier appointment.  It's usually with a senior pharmacist although I can request a Dr if I wish.  They will adjust your medication if or as required.  I take CBD during the day for pain.  It has minimal amounts of THC although I'm also prescribed a mix of both for bouts of acute pain and fatigue as required.  In the evening I take THC alone to help make me drowsy enough to get to sleep.  I have no psychoactive side effects from THC at all.

Morvern

That is interesting to hear. How did you find a pain consultant? Are they a doctor? I like the sound of the careful way that you are approaching this. 

I wonder if there are preparations that carry a wider range of active ingredients that are legal. I am not sure how to go about finding out, though your pain clinic sounds like a good place to start

I'm an NHS Pain Clinic patient but had joined a private clinic to get these products as my medication was no longer helping. The Consultant I saw initially was a Rheumatologist with a special interest in pain management, so yes, a proper doctor.   All the staff you see are fully qualified.  I'm not sure if they all work in the NHS to but many of them do.  The Consultant I've seen does as does the doctor who started the clinic in the first place.  Both are in very senior NHS roles and are well respected.  The clinic was originally started because of limitations in NHS pain prescribing which for many people with chronic pain isn't great. People also join because they want to reduce or stop some of their NHS prescribed medication and take this as an alternative if possible. The NHS have given the clinic I use very good reviews. If you're accepted you have the option of answering research questionaires regularily as this all goes towards analysing the efficacy of cannabis products for different health conditions. Lack of this type of research is part of the reason it's very rarely prescribed by the NHS.  They seem to have an increasing range of products using different strains of plant so prescribing varies from person to person dependent on what's wrong with you.  THC is prescribed but as it's medicinal it's to help with your health issues not to make you high.  Prescribed doses are generally lower than would be taken recreationally so that shouldn't be a problem.  If you're in the UK you can search online for medicinal cannabis clinics.  I can't give names but the one I use was the first to be granted approval by the Care Quality Commission in England as well as the Scottish Regulator.  There's loads of info on their website with no obligation to join whatsoever.  I hope I've not put too much information in my reply.  Morvern

Hi fiddlesticks  and an interesting question. It is true that a lot of over the counter and online CBD isn't very good.  I also use CBD oil sometimes,  and started 4 years ago before the government changed the rules in THC content,  dropping it from 0.4% to 0.2%. Most UK sellers at that time stopped selling full spectrum oils,  which have what's called the 'entourage ' effect

The one I bought (CB distillery) when first diagnosed was really good,  though the version isn't available in the UK now. Look online for broad spectrum (full spectrum isn't available in the UK now), and at the top recommended ones. Some have excellent deals from time to time.  I buy Blessed CBD  when they have a 2 for 1 sale,  which is very good,  but there are others. 

.If you decide to go with the private route for THC then check if it is suitable for you.  

 I've explored the medical marijuana route, and it can be a bit pricey through private prescriptions. Some clinics charge the £50 consultation fee each time, which adds up. It's crucial to clarify this with the clinic and make sure you're comfortable with the costs. For some, the relief it brings is worth it, but it's definitely a personal decision.

You are right that it’s expensive, as are most supplements or re-purposed drugs. Also I was reading that depending on hormone status that 1:1 THC:CBD is better, whereas for others just CBD is the right thing. I suppose advantage of private clinic is monitoring and accurately titrated doses. It’s important to take advice on these things. I imagine over the counter CBD preparations vary hugely in quality and dose, even compared with what is stated on the bottle.