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/

Caroline Barry | Nottingham, UK | 13.05.2021

Caroline Barry is an Irish journalist based in Nottingham, England. She writes for 1The Cannavist and 2Vapouround magazines on vaping, CBD and cannabis. With over 13 years of experience as a journalist, she has worked in radio and written for publications across the UK, Ireland and the US. She has written about LGBT+ rights, culture, politics and music. She is currently working on her first non-fiction novel about neurodiversity and relationships. 

Twitter:  @mizzpennydreadf /

Instagram: @penny_dreadful_x



When did you first become interested in make-up and fashion?

I started in fashion and beauty journalism in 2008 when I created my blog, 3Miss Penny Dreadful. At the time, there weren’t many Irish fashion bloggers out there, so it started to build up a lot of followers and attention from brands. I was also working as a make-up artist at the time in Dublin and Galway too, so I combined my skills as a creative writer and an MUA to make the blog interesting and fresh.

When you began your blog in 2009, did you have a strong sense of wanting to pursue a career in journalism or did it start as more of a hobby?

It started as a hobby! I was a broke art student in Limerick who couldn’t afford to buy all the lovely clothing I saw in shops and on the catwalk. I hadn’t thought about writing as a career but the more I wrote, the more people kept saying they enjoyed what I was writing. My work in art college started to become more text-based too, in the form of poetry and performance art. When I moved to Dublin in 2009, I didn’t know what to do with myself. The blog was getting insane attention from brands and PR companies with the readership figures in the thousands, then millions. I walked into an MA degree open day for journalism one day, on a whim. I realised that it was exactly what I had been looking for. I’ve never had anything career-wise suit me more than journalism. I love it.

What are some of your favourite fashion collections or events that you’ve covered?

Although I was so passionate about fashion and beauty, I actually ended up working in a lot of different types of journalism. I am currently working in vaping, CBD and cannabis journalism in the UK which is totally different. I’ve reported on sports events and general elections too. I think my favourite events that I have covered have been the ones where I’ve had a personal connection to them. I was invited to the Irish embassy in London to cover an Irish fashion event there in 2013/14. It felt so surreal to be there as an Irish person in the UK. I was so proud. I covered London Fashion Week too, which was wild. I’ve also interviewed some of my favourite bands and designers, such as Band of Skulls and Peter Pilotto.

Are there any cannabis-themed fashion collections or brands you’d recommend? (A very niche question, I know!)

Niche, but I can actually recommend one! I am passionate about water wastage and the environment. I started moving to ethical denim about two years ago, because our current denim obsession is out of control and dangerous. I came across 4Canvaloop jeans when researching a piece for The Cannavist magazine on hemp clothing. They are an Indiegogo campaign that actually raised a huge amount of startup funding to make jeans from hemp. They have some gorgeous styles. Also, there is 5DevoHome making faux fur from hemp, which is biodegradable as well. It’s unreal how adaptable hemp actually is. 

What was your favourite aspect of presenting The Indie Show on URN (University Radio Nottingham)?

I moved into presenting after a long period of working behind the scenes on radio stations in Ireland. I had been with Newstalk for a while, working on shows such as The Eamon Dunphy Breakfast Show among a few others. I had also appeared on Newstalk a few times to talk about LGBT+ rights. I loved working on The Indie Show because it gave me the freedom to play my music as I wanted to. Prior to this, I had a breakfast show with another station which I had to play chart music for, which destroyed me a bit! I am one of the chattiest people, so having my own show gave me the freedom to talk about music, play amazing records and chill out for a few hours. I do miss radio terribly. 

When did you first develop an interest in cannabis?

I started smoking cannabis recreationally, as we all do. I wasn’t into drinking as a teenager because I didn’t like how it interacted with me. I have ADHD, which cannabis helped. Although I didn’t realise that as a teen, I just thought I was being a rebel. I smoked on and off for years as an adult too, during my art college years. Although I didn’t start researching or being interested in it until I joined The Cannavist in 2020. I had been taking CBD oil for anxiety, but working on the magazine opened my eyes to how cannabis could potentially be helpful for ADHD and other conditions.

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

My relationship is fractured. While I recognise that it really does help me, I am less than thrilled about how I have to access it. Prohibition means that I cannot access it easily. I am forever worried about my safety when it comes to finding someone who can supply me. I worry that I’m going to get arrested, attacked or caught with it. I also worry about what I’m being given. I’ve recently moved to a new area, so I’m stressing about finding someone to help me. Which means, I only have CBD at the minute. While I love CBD for anxiety and keeping me calm, it doesn’t do what THC can do for my ADHD. I would love to be able to go to a nice shop, chat to a professional, choose my choice and have a relaxing experience where I know I have enough to last me. So while I love cannabis and CBD, I’m not thrilled that I’m forced into breaking the law to access it.

Do you use weed from a more recreational or therapeutic point of view?

I think we need to look at all cannabis as therapeutic. I use it to calm myself after a day where my ADHD is making it difficult for me to relax or sleep. We all have a certain level of stress either on the body or the mind, especially after the absolute hell that was 2020, so cannabis can help us to relax and heal. I’m working on changing my language around cannabis, in that I try to no longer refer to ‘medical cannabis’ or ‘cannabis’. I see why medical cannabis is trying to distance itself from the recreational side in terms of stigma, but really, we all have the same end goal. We want to see it legal, safe and accessible.

Do you see the current Irish government reforming Ireland’s cannabis laws?

I will say never say never. I once believed, as a gay person who can get pregnant in Ireland that I would never see gay marriage or abortion legal in this country. I campaigned HARD for both and I still occasionally cannot believe we got it. I can’t see Fianna Fáil or Fine Gael getting up to do it without the same level of noise, pressure and campaigning that went into the years leading up to those referendums. They have no interest in it because they don’t understand it, and why change it if they keep getting voted in? I think we have some huge problems in this country that are going to make it hard for FF/FG (and the Greens) come the next election. Cannabis will be one of them and the housing crisis is another. But I will say nothing will get done without people coming forward to say: “I use it and I want safe, legal access.” 

Do you know a lot of people who use cannabis?

I do. As part of my role as a journalist on The Cannavist, I interview a lot of people in the UK, Ireland and the US who use cannabis. This could be legally, illegally, THC or CBD for a lot of different conditions. The stories are heartbreaking each time and the pain is very real. I’ve spoken to people with 6endometriosis or 7fibromyalgia who cannot get out of bed, but cannabis has given them their lives back. The government needs to hear the same things we do and realise there are a lot of people in serious pain. I defy them to hear it and not realise we need to have a serious talk about legalisation.

Do you ever feel unsafe getting cannabis, due to its illegality?

Yes. Constantly. As a genderfluid LGBT+ person, I feel very worried about the places I may have to go to get access to it. I constantly worry if I’m approached about what I’m getting, or who is approaching me. I’ve had negative experiences in the past with accessing it. I live in a slightly rough area, so there are a lot of dealers locally, but I worry about accessing it in my area because it’s on my doorstep. 

What do you miss the most about home?

My family. I miss them so much. While technology is great now and I’ve got more access than I ever did, it doesn’t replace actually being there. On a more random level, I really miss home in terms of language and culture. I can get so tired explaining what ‘the press’ or ‘craic’ or ‘arrah go on away like’ means to English people. I’m very lucky in that both of my editors at The Cannavist and Vapouround are Irish, so that helps with the homesickness!

What do you NOT miss about being back home?

The housing crisis. I emigrated in 2012, when I realised that there was no future for me in Ireland because of the recession. It was the highest year for emigration that year. I really want to return in the future, but I can’t see myself being able to do it. I bought a house in the UK and have a career in journalism here. I could never do that back home. I would need to be near a city to do my job, which means renting, because I could never afford to buy. Irish media is impossible to get into full time, which is part of the reason I left. I hate that I have a house here instead of back home, where I could be near my family. Especially this past year, where it’s impossible to travel.

How do you see UK-based cannabis activism faring in the near future?

I would like to see campaigning for easier access here. I think we know it has to happen but so far, it’s slow. I would love to see the UK relax and embrace cannabis the same way that the US has done. I don’t think that it is going to be easy, but I think the UK is ahead of Ireland in some respects. I think it’s going to take grass roots activism here too, to get the dispensaries and safe access we want. I think with recession, recovery and post-lockdown funds needing to be generated, we could be close to it. If the UK looks to the US in terms of tax generated and an entire industry created, then we could be close. I’d love to see the UK get organised to draw attention to it.

Thanks so much for your time, Caroline!

References:

1 The Cannavist magazine – https://www.cannavistmag.com/

2 Vapouround magazine https://www.vapouround.co.uk/

3 Caroline’s old blog, Miss Penny Dreadfulhttps://misspennydreadful.blogspot.com/ 

4 Canvaloophttps://www.canvaloop.com/ 

5 DevoHome – https://www.devohome.com/en/store/

6 Interview with endometriosis patient and activist, Aimee Brown

https://greenlensblog.com/2020/12/30/aimee-brown-20-12-2020/

7 Interview with fibromyalgia patient and activist, Adrienne Lynch

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