As you may know I am crowdfunding medical cannabis for up to one year as I can’t afford it myself as I can’t work and am on £300 a month income which isn’t enough to get by on as it is, plus there is absolutely nothing else on the NHS for my chronic pain. You can read my previous blog post about it here.
I am getting closer to 10 out of 10 pain again as the days pass. It is close to 9 again now which is horrific. It is unbearable at a 10 and I am bedbound all the time with it and can barely cope with the pain then. This is my only chance for pain relief. Sadly with a price tag I can’t afford as you can’t get it on the NHS for pain, only from private doctors.
I could have never afforded even a months supply of medical cannabis, on my £300 a month disability income as I struggle to afford anything on that! Couldn’t even afford rent anywhere on £300 a month, not that I could use it all for that anyway as I have to buy my regular medications plus food as well and bills. Don’t have a lot for food either as I use around 55p a day for food, so couldn’t afford this cannabis at all if it wasn’t thanks to the crowdfund so I am immensely thankful for the first months supply!
I hope I get a few more donations so I can have as long a possible as this is something completely out of reach for me on just £300 a month. The crowdfund is still up on JustGiving right now if you want to help.
I managed to raise enough for 2 months supply so far of 1g a day at £150 a month, and the initial appointment £100 fee which is brilliant so thank you all so far. Haven’t raised the first month appointment as yet (£45 in 30 days) so just have enough for 1 months supply right now and the first appointment.
Follow up appointments are £45 which are every month for 6 months then every 3 months after that. I would love to raise enough for that and even more so that I can have more months of pain relief, but I don’t expect anything from anyone. Anyone that has helped so far is amazing. Even a few pounds all adds up!
I could never afford this on £300 a month income as I struggle to get by and couldn’t even afford rent anywhere on this so I could never afford this myself without help from kind people.
I had the free eligibility and the initial consultation and was told to use oil and flower but that was £300 a month. I said that is more than I can afford. I am crowdfunding for £150 a month which is just for 1 product at 1g a day. I would normally need both oil and flower together or around 2g of flower.
I didn’t ask for more in my crowdfund as it is a lot to ask for and I don’t think many will help as they see the word cannabis and think of drugs rather than a safe, natural painkiller that has never killed anyone ever. This is the last painkiller available as I have tried everything else and I know cannabis helps, the only issue is the cost as you can’t get it on the NHS for pain.
I am speaking to my doctor next week so I will tell him about the cannabis. I did tell him already I was going to try it as he knows I have told him many times that it works for me but doctors on the NHS barely know it is available (although it isn’t for pain) and he once joked I should move to the US as you can get it legally there which wasn’t a nice thing to say really when I am desperate for painkillers. Making fun of me by saying things I wish I could have done decades ago isn’t a joke.
Inital consultation at the private doctor for cannabis
Bad experience at the first consultation for the cannabis due to a dreadful NHS doctor at the private clinic.
Sadly the doctor I saw at the clinic for the inital consultation was new there (new to cannabis and the clinic not a new doctor) gaslighted me, spoke to me like rubbish, dismissed me pain, belittled me, butted in all the time so I couldn’t speak and didn’t listen to me about my pain. Awful doctor.
He spoke about injections saying “I am surprised you haven’t had injections as they can provide a day or even a few hours relief”. That is why I haven’t had them!
Doctors agreed it made no sense as firstly I pass out with needles. Secondly I am housebound so walking is horrific for me and I can’t walk for and can’t afford a power chair! Thirdly a few hours relief for the torture of getting out and having injections for a few hours relief makes no sense at all!
Then he spoke about things I could have done with my patches to help with the withdrawals between patches such as change them a few hours earlier everything but that goes into when you are sleeping. It went on forever and I said “I can’t do that as I would be asleep”, and he replied “doesn’t matter anyway as you change them every 48 hours”. He spoke for ages about something that didn’t matter?!
When I was explaining my pain I said “The pain gets to 10 out of 10 which is me in bed, screaming and crying day and night, unable to sleep or get comfy as it is unbearable all the time. I wanted to die as it was that unbearable”. I didn’t get far as he butted in and said “I don’t like numbers, what is a 10”, I said “but I was explaining what a 10 is for me!” He was absolutely dreadful.
Then he interrupted me many times, dismissed my pain and what I was saying including when I said “if I stand up there for a short time I will fall to the ground with pain”, he replied “yes many with pain have balance issues”, “I said it is not balance, it is pain!”
He was awful. He is an NHS doctor as well so that made me expect this kind of talk but not at a paid for private doctors cannabis clinic!
He mentioned the cannabis project and I said “that is why I am here!”, he replied “there isn’t many spots for that”. I said “I got in already, I signed the papers for it!”. He didn’t seem to even know…
He also didn’t know I have the eligibility interview which is strange. It was there on my file!
He said that I could try to fix my chronic pain while on the cannabis. It is incurable pain. I told him physio doesn’t work and he said I should have psychological and physiotherapy for being housebound all the time…. “I said I have have CBT and mindfulness and it doesn’t work. I came to terms with the pain decades ago”. He wouldn’t listen to me when I explained my pain at all.
Cure my pain is impossible. I have seen tons of doctors and they all know it is permanent and will get worse. This guy seemed to think I could do things to fix it….
He said “1g a day is too much, should be a tiny amount a day” This is what most patients are on. This is not a lot. He said “inital findings show cannabis isn’t good for pain” That is not true either.
He didn’t mention any possible doses of cannabis and the end and I had to contact the clinic to find out what happens next as he didn’t tell me that either.
I was in tears at the end of the appointment! So much I had to contact them about it!
He then wrote a letter to my GP with lies in. I remembered the other bad experience I had with a doctor in the NHS a few years back. This was similar.
He said the rheumatologist diagnosed fibromyalgia. He didn’t. I don’t have fibromyalgia. I have chronic pain and chronic fatigue and had them both decades, one longer than the other. i don’t have fibromyalgia as I don’t have good days and don’t have pressure points. That is why it is chronic pain and chronic fatigue.
Fibromyalgia is often wrongly diagnosed if you have pain and fatigue but it is not it if you don’t have some specifics such as pressure points etc.
The rheumatologist I only saw last year and that was for the positive ANA blood test. He didn’t diagnose a thing!
He also said I said I was there to get off my fentanyl. Nope I never said that as I was there as it isn’t working as well as it did. 1g of cannabis a day probably isn’t enough to have nothing else as I would need 2g a day really for good pain relief or the oil and flower.
There were other lies and mistakes in the letter too. Why are doctors so bad with this?? The info is on my record, they just don’t read it or skim read.
So many mistakes in a letter that is permanently on your medical record. Shameful. Especially after I had already contacted them about this doctor because of the horrible first appointment.
I did complain about the first appointment and also the letter. I never heard back about the letter issues sadly, only one reply saying a doctor would speak to me about it but they didn’t.
Very slow to get the prescription written too. After the board approved me, they said oil and flower. I said I can’t afford both. He said he would have to speak to them again to approve just flower which makes no sense. Normally you get approved and the doctor prescribes whatever he wants.
Took 2 weeks from the appointment to get approved and receive the prescription in the post after paying. One week from them sending it to be able to pay which is a long time. They also took 4 days to post the prescription to the pharmacy AFTER I had been approved. They said they would do it same day but it was much later.
So far not a great experience. The eligiblity appointment was great but then it went downhill with the other doctor. As it is like a clinical trial where you give feedback and do surveys, I will give more feedback about it as I am always honest and upfront with issues.
Least I have one months medical cannabis which is great!! Pain relief for a month from a safe painkiller. I really hope I can get more as it means more pain relief and less days with unbearable pain but for that, I need your help. Even a few pounds all adds up so anything is helpful.
If you can help please do, it would be massively appreciated! There is LOTS of info on the JustGiving page with photos and other detailed info.
The crowdfund is on JustGiving and you can donate wherever you are in the world via card, PayPal, bank transfer as long as you choose to donate in pounds. Your bank or PayPal will convert it to pounds. Info here on donating if you are outside the UK.
There is also VibePay where you can link the app safely to your UK bank and pay with no fees for either of us if you wish to donate like that.
Thank you so much if you can help. Anything helps as it is always more than I can spare and it all helps massively!
First off, your doctor is ignorant. Cannabis is not legal everywhere in the US. Secondly, the amount of cannabis you will need daily will change. Some days you’ll need more and some less. Now for a money saving and lung saving tip: Dry vape versus smoking flower. The first link below is to the dry vaping device I use. Best product because it will last forever and not break. Can also be washed in the dishwasher!
Anyways, it is better for your lungs because you are only heating the flower, not burning it. It will save you money and multiply the amount of relief you get from the flower when you save your used flower. Dry vaping decarboxylates the flower in the same manner that it is done in the oven to prepare it for making cannabutter or oil.
The second link below is one to my free canna cookbook that discusses how to make a canna base for edibles via dry vaping or oven and easy to make canna recipes. Edibles are best extended pain relief. The effect from smoking does not last as long. Feel free to ask any questions. When I began treating pain with cannabis in 2003, I had a monthly budget of $50!! That did not go far, but I learned how to make it go farther.
Dry vaporizer https://www.dynavap.com/ *there are other brands that are electric, but they would break after a few months or right after their one year guarantee mark, I have been using the same Dynavape pipe for three years.
Canna cookbook https://thedisableddivablog.com/2020/03/25/free-cooking-with-cannabis-basics-ebook/
Hey Cynthia!
Yeah he is. I told him it is only in some states as I have travelled to all of the recreationally legal ones (missing the newer states due to no money to travel anymore) as I have used cannabis for decades by travelling to legal places to have less pain for a few weeks on holiday up to before I had to stop working when it got too bad that I couldn’t work anymore.
I was upset by the comment as one, I would love to have lived in the US if I could as I don’t like this country at all and have wanted to live over there since I was a kid but sadly life and health got in the way so I couldn’t ever do that now anyway as I can’t work. And secondly because him telling me to move there is making a joke of a very real situation where there is something that helps but not on the NHS. Not something he should be making fun of.
I have a vape which I will be doing a review of which is wonderful.
Here in the UK you get oil to put under your tongue or flower to vape. You aren’t supposed to smoke it here medically, only vape.
I would love to make edibles although you only get enough to last you a month which is so silly. We should have it like it is in the US where you can get as much as you want up to a specific amount.
I couldn’t bake anything anyway as I can’t stand long and couldn’t afford the ingredients as I only have 55p a day for food and struggle to eat enough on that. The medication was crowdfunded although only for a month and an appointment as I have to have an appointment which costs money between months supply as well.
It costs £150 a month for the cannabis alone and I have just 55p a day for food on my £300 disability so I can’t afford much.
I couldn’t afford this months supply without the help of the crowdfund so I am so happy for that as my £300 a month doesn’t cover living costs and I couldn’t afford rent anywhere in the country let alone enough food. I just wish £150 got my much more than a month supply as it won’t last and I can’t afford it.
You get a months supply all at once that has to last you
Thank you though