Milly Gilbert | 20.05.2021

Milly Gilbert lives in the UK. She suffers with mental health and physical conditions including depression, generalised anxiety, C-PTSD (complex post traumatic stress disorder), 1dissociative seizures, 2hEDS (Hypermobile Ehlers Danlos Syndrome) and 3fibromyalgia. She has a private medical cannabis prescription for thirty grams of indica flower a month and 50mls of oil (CBD 10:THC 5), as she did not qualify for cannabis prescribed through the NHS (National Health Service).

Twitter: @millygilbert17

Can you please give us an outline of your experiences receiving diagnoses of your mental health conditions within the UK health system?

I was diagnosed with depression by my GP back in 2011, after moving back to the UK, having lived in New Zealand for four and a half years prior. I was on and off antidepressants for a while, but I never found they helped. In 2015, I went back onto antidepressants after coming back from a holiday early, which had triggered some bad memories. After this I was unable to work, due to both my mental health and my physical health. I have Hypermobile Ehlers Danlos and fibromyalgia, which cause lots of other medical problems and leave me with lots of daily pain. In 2019, my mental health was at the worst it had ever been. I had started picking at my skin, which has left me with scarring, and I really struggled to cope with all the emotion I was feeling. I started having night terrors, flashbacks and what I didn’t realise at the time were dissociative seizures. At the end of 2019, I spoke to my GP about how bad things had become and I was told to self refer to have therapy. I did this and heard from them a few months later. By this point the pandemic had hit, which meant they were no longer able to take on patients.

They decided I should be seen as an urgent case though, so they referred me to another clinic. A few months later I heard from them and they said that I could start therapy, but there would be a wait. In the meantime, they would get a Psychiatrist to see if they could help. The Psychiatrist spoke to me and we talked about traumatic experiences and how I was struggling. He then diagnosed c-PTSD, dissociative seizures, generalised anxiety and depression. I was already on an antidepressant, but they placed me on a mood suppressant and medication to help me sleep. I didn’t get to start therapy until November, by which time it had been a year since I first self referred myself. 

For those who are not familiar with the term, can you please define dissociative seizures?

Dissociative seizures are also known as non-epileptic seizures. People may have different types of seizures. For me I would become starry or seem spaced out, I would be completely blank. Other times, I would have a conversation with people that I would have no memory of happening. For people who didn’t know I had these seizures, they would often think I was just falling asleep as that’s what it would look like to them. For me, my vision would go weird and my head would just drop. I have spilled many drinks after having these seizures while holding a drink. Other times I would shake, or my joints would jolt uncontrollably. My triggers are stress and anxiety as well as when I struggle with triggering thoughts. I also struggle with this when I overheat.

Why was it that you didn’t qualify for medical cannabis through the NHS? Do you believe the scheme is in need of expansion?

On the NHS, you only qualify for medical cannabis if you are a child with epilepsy, an adult with vomiting or nausea caused by chemotherapy, or if you have MS (Multiple Sclerosis). Even with these conditions, there has only been around three prescriptions of medical cannabis prescribed on the NHS. Currently NICE (The National Institute for Health and Care Excellence) say there is not enough evidence on cannabis to treat chronic pain.

What’s your relationship with cannabis like and what are your preferences when using it?

I have never had any problems when using cannabis and have found it has helped me in many ways. The oil I have is 0.5mls, three times a day and I can also have up to 1g of cannabis flower to vape daily. I always vape this, and the amount I use a day will change depending on how my pain is. 

When did you first become interested in cannabis?

I became interested in cannabis approximately around 2018. It was something I had been talking about with my dad, and we then went to Green Pride in Brighton. At the time I didn’t know too much about cannabis, but had heard it had helped people so that’s when I started to do more research. A private prescription was too expensive and so I had to wait until 4Project Twenty21 started up. 

How does weed help your conditions and how does using it compare with conventional prescribed medications?

The flower has really helped my pain, and I have been able to come off high doses of opioids. At one point, I was on 7.5mls of Oxycodone liquid, six times a day, and I was on 10mg Oxycodone tablets in the morning and 20mg at night. The oil has also really helped my mental health, due to it being a higher dose of CBD. And when I ran out of the oil at one point, I noticed a dip in my mental health. My health has improved in other ways also. I am able to sleep better and no longer need sleeping tablets. My gut issues improved and it’s also helped my chronic migraines.

Have you tried CBD supplements and what was your opinion of them?

I have tried CBD oil in the past as well as CBD liquid that went in a vape. I never found much improvement with these. I am unsure if these were full spectrum or not.

In Ireland, CBD businesses adhering to the EU law of selling products with less than .2% THC content have been enduring raids from Irish police, who do not yet recognise this law in the Irish legal context.

How has the sale of CBD been treated in the U.K? 

I believe labelling had to change on full spectrum products. There was also a café that sold CBD products, however they were raided and ended up having to close and also lost all their product. I do still notice shops selling CBD products, however I am unsure if these are full or broad spectrum.

Do you know a lot of people who use cannabis?

I know of a few people who use it recreationally, but I know more who take it for medical reasons, due to meeting them online. Some of these people have a prescription, turn to a dealer, or grow it themselves. I also have had friends coming to me asking how they could go about getting a prescription due to problems with medication or doctors wanting them off pain medication, in the hopes that it would also help them.

Do you see the UK government making further reforms on existing cannabis laws in the near future? Do you think that those in power now will make this happen? 

I’m not sure if it will happen in the near future, although i would like to hope it is coming soon. I don’t think it will happen under those currently in power though. I have had contact with my own MP who tells me that it’s already on the NHS and that it’s not an issue for the government to get involved in, it’s down to NICE. She isn’t interested in hearing what we have to say and I feel this is the same with many of those currently in power.

Do you ever feel unsafe getting illegal cannabis in England?

I have only ever had it from a person I knew before I received my prescription. I feel like if I received it illegally, I would need to make sure I trusted that person enough to make sure what I was getting was safe and not something synthetic or laced with something such as rat poison. I would be happy growing it if I knew how to.

Do you think British cannabis culture has changed much over the years?

I think there are more people accepting of cannabis use for medical reasons, especially with everyone sharing their stories of how it’s helped them. However, I still feel like we have a long way to go as there are still some people who are anti-cannabis, as they feel like it has no medical purposes and is dangerous.

Do you think the dissemination of cannabis research is reaching the right people?

I think we still have a way to go to get the research out to the right places. While there is some good research going on, we also know that cannabis has been used for thousands of years, but this doesn’t seem to get counted into the research. Research is also going into oils rather than cannabis flower, as it’s believed it’s easier to manage the prescriptions this way. For a person with chronic pain, something like the cannabis flower would work better as it’s something you can take as and when you need to, like you would with opioids. My fear with only putting us on oil is that we can only have it at set times, leaving us in pain in between doses. I also feel more Doctors need knowledge on cannabis. I had one GP tell me that many people find cannabis helps much better than opioids, but went on to tell me that he wasn’t allowed to tell me that information due to it being illegal. After he left, I spoke to my new GP about it and she always seemed against the idea, due to a lack of proof from NICE showing that it worked. She wanted me off of my opioids, so I told her I would only do so when I have a cannabis prescription. She is now really happy to hear how well I’ve gotten on with cannabis and was able to help me come off my opioids quickly.

Thanks for your time Milly, all the best!

References:

1 For more information on dissociative seizures, see this link –

https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead/

2 For general information about EDS (Ehlers Danlos Syndrome), visit – https://www.ehlers-danlos.org/

3 Interview with fibromyalgia patient and activist, Adrienne Lynch

https://greenlensblog.com/2021/01/15/adrienne-lynch-3pm-09-01-2021/

4 The official Project Twenty21 website can be found here – https://www.drugscience.org.uk/project-twenty21/

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