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/

Emily – Part II | 26.03.21

Emily describes herself as an Irish goth who loves makeup. She has Asperger’s Syndrome and suffers from other physical and mental health conditions which greatly affect her quality of life. Here, she speaks in more depth about the kinds of medications she has been prescribed and how she takes them, while also looking at their side effects and faults and how they compare with cannabis. Twitter: @lilithlunalou

Hi again! How many prescribed medications do you take on a typical day?

I’ve been on numerous medications throughout the years. Mostly opiate-based medication, like Tylex, OxyNorm and antibiotics. I was prescribed things like Olanzapine, Seroquel, Risperidone. I can’t remember the rest, unfortunately. 

Do you believe the medications improve your quality of life overall?

Most of them made me worse or didn’t do anything at all.

Do you believe your medications have been prescribed carefully (i.e. not over-prescribed)?

I was over-prescribed many times, especially when I was in hospital. No-one was on half the medication I was on. I couldn’t wake up and function. I could only sleep and drool, that’s all I was fit to do. The nurses would try to get me out of bed. I would try and I’d walk through the hallway, leaning against the walls for support as I walked

Does purchasing those prescribed meds cost you a lot?

It used to, till I got my medical card. 

How do your medications affect you? Are there any in particular which stand out in terms of side effects, or a lack of efficacy?

I’m only on one prescription at the moment and that’s my depot of Paliperidone. I’m lucky that this one doesn’t make you drowsy, however it does cause weight gain. As a result, my ankles and legs are swollen with water retention and so is most of my body. Walking can feel like walking on glass or pebbles. 

Which of your prescribed medications work best?

None have worked for me. They’ve caused more problems than help. Cannabis is the only thing that’s worked for me. 

How would you compare the effects of the antipsychotics with the antidepressants? Do they work well together?

No, as you end up getting triple the amount of side effects. 

Are there any Irish CBD products you’ve tried and particularly liked?

I haven’t tried any Irish brands. I have tried American and English brands, such as 2400mg of CBD Leaf oil, as well as 1500mg of CBD leaf vape juice. I’ve tried CBD flowers, such as Diesel and Great White Shark. Both were good. I’ve tried roll-on oil for back pain, which is good. The only problem is, it’s a small bottle. And you’ve to buy three or four, so you’re not panicking in a short period of time about when you can get the next bottle. Also, I must note, CBD does wonders for my sleep. I normally only get an hour’s sleep, if lucky, without cannabis. I sleep every night, at least for seven or eight hours, when I use cannabis.

Do you believe cannabis has any benefits in particular for someone with Asperger’s Syndrome?

My partner and grandad noticed I socialise better. I’m able to hold a conversation without going into too much detail and going into overload. I don’t panic or stress as much as I used to over basic tasks. This does depend on the CBD product and what strain I’m using. 

When did your partner start using cannabis for pain relief? Late twenties.

What sort of pain does cannabis help your partner with?

All strains do wonders for my partner. I’ve seen him without it for a couple of weeks. He was coming home from work, barely able to walk. All he was able for was lying in bed or sitting on the couch. He had to take time off of work. seeing him like that broke my heart. 

Do you and your partner ever feel unsafe getting cannabis in Ireland, due to its general illegality? Yes.

And why do you feel unsafe?

Having to source it by a drug dealer, instead of buying it from a legal and regulated source. The fact that it’s criminalised is a huge factor as to why it’s unsafe. When you’re getting it from a dealer you don’t know what strain it is, what THC or CBD levels are in it. You don’t know if it’s been chemically grown or sprayed. 

How does using cannabis help with your eating disorder?

Increases appetite, reduces nausea and vomiting. It also relaxes me to the point where now, I can actually do more research into finding out more about it. It also gets rid of my body dysmorphia. I don’t see myself as obese, the way I do when I’ve no CBD in my system. 

How would you describe Schizophrenia to other people?

It’s seeing/hearing/smelling/feeling things that aren’t there. 

Do you experience the symptoms of it often?

Every day I experience symptoms. The intensity of it varies from day to day. When I’m relaxed or feeling normal, it’s not as bad. It only got worse when I was on prescribed medication. On the box of some of these meds, in small print, it said: “May cause anxiety, depression and suicidal thoughts”. We weren’t told this, so it was until it was too late and my partner read the box that we realised why I got so bad. Since being off those kinds of medications, I’m stabilising. The symptoms usually ease as you get older. When I was in my late teens to early twenties, it was really bad. As I’m getting older and doing a lot of mental work on myself with the help of cannabis, my symptoms aren’t all day every day, like before. Now that my body isn’t constantly fighting physical pain, I can tackle my mental pain head on! I get symptoms every day, but it’s not as scary as people think. What I experience is spiritual, not in a religious way. 

Can you elaborate on why the experience feels spiritual for you? I would rather not answer. 

Do you feel, personally, that cannabis affects your Schizophrenia?

No. The only time it affected me badly was when I was scared to use it. Once I let go of my fear, it really started to help. Also, it’s like any medication. There are many strains. It will take time to find one that suits everything. However, even the cannabis that didn’t suit me 100% was better than any prescribed medication I’ve been on. 

Do you believe cannabis helps with Bipolar Disorder?

Cannabis has multiple benefits for multiple ailments. I think it can help with all mental illnesses, including helping with physical ailments. Cannabis has helped me with all my ailments, from my head to toes. We all have the receptors in our bodies for this plant. Bipolar is an imbalanced level of emotions. Cannabis relaxes patients with mental health issues; it quietens the mind. If the mind is quietened and it’s relaxed, emotions will level out also, as a result. 

Thanks again for chatting with me Emily, all the best!

Emily | 23.03.21

Emily describes herself as a goth who loves makeup. She has Asperger’s Syndrome and suffers from other physical and mental health conditions which greatly affect her quality of life. Here, she speaks of how she has tackled these conditions and how the Irish system has failed her on many occasions by not providing her with adequate care. She also describes how cannabis has significantly changed her life, by doing what conventional medicines couldn’t. Twitter: @lilithlunalou

Hi Emily, firstly thanks so much for devoting some time to speak to us.

Can you tell us a little bit about who you are?

I’m 24, I live in County Cork.

When did you first find out you had a Desmoid tumour?

After my last surgery, my abdomen became unbearably itchy and it wouldn’t go away. Then lumps started to form. I kept going to my Doctor, [redacted], to seek further help. He told me it was just the stitching that needed to dissolve. He had previously told me it would only take a couple months for the stitches to dissolve. Four years later, after many hospital admissions, being in constant extreme levels of pain and lumps getting bigger, I finally got them to take a scan and biopsy. I was 21 or 22 when I found out I had two Desmoids. I possibly have a third one as I’ve a third lump, but they are refusing to look into it. 

Why won’t they look into the possibility of a third Desmoid tumour?

My case always gets overlooked. My partner wants to go to the newspaper or radio station with how I’ve been treated over the years. They just don’t seem to care. I keep asking my GP to ring them or email them and she keeps saying: “They haven’t gotten back to me. That probably means they didn’t find anything sinister”. Yet when I question the multiple Oncologists, I see they always act puzzled and ignore my question about the third lump. I never seem to see the Oncologist that was assigned to me, Doctor [redacted]. Women don’t get taken seriously by Doctors, especially if they are autistic. Whenever my partner comes in with me, I get treated with respect. If I go to appointments with another female, or by myself, I get ignored and rushed out the door. They give little information and little to no help with issues.

I’m very sorry to hear that. It’s disgraceful to be treated that way by anyone, but especially by medical professionals who have a significant influence on your health. When did you discover that you had Familial Adenomatous Polyposis?

I discovered I had FAP at age eighteen. It’s hereditary. We knew at a certain age that we would need a scope to see if we inherited the same condition as my dad. 

When were you diagnosed with Asperger’s, and anxiety, respectively?

I was diagnosed with Asperger’s syndrome at age eleven or twelve. I suffer with anxiety through trauma that I’ve experienced and have not been diagnosed with anxiety disorder. 

Have you attempted getting a diagnosis for your anxiety disorder before?

(If so, why do you feel that they were mistaken by not diagnosing you with one?)

I’ve tried to get properly screened for diagnoses and every Psychologist keeps telling me they are not quick to diagnose any more. It’s been over ten years I think, I’m overdue a screening for diagnosis. Emily laughs They keep telling me you may have (specific condition). Then I get told I don’t have it. And then I get told I may have (specific condition) again. I got treated very badly in [redacted] in Dublin, while under the Consultant, [redacted]. They wouldn’t allow me pain medication for my tumours.

I had my GP send a prescription letter and all my medical history to them before I even went up for admission. I was there four months and three out of those four months, I had no pain relief. That is only the tip of the iceberg of how I got treated there. As a result of how I got treated, I have no desire to seek help from Psychiatrists and Psychologists any more. 

That’s terrible, I’m so sorry to hear that your trust has been broken like that by psychological professionals. I hope others will handle your needs better and treat you with the respect you deserve, by listening to your feedback. Do your conditions affect you significantly on a day-to-day basis? Can it vary?

Yes, I’ve other conditions such as Schizophrenia and BPD (Bipolar Disorder) which interfere with my social life greatly. Before Covid, I spent most of my time in my room. I didn’t function, I didn’t shower, eat or sleep. I merely existed. 

What’s your view on the existing resources available in Ireland for Asperger’s Syndrome?

Are there enough help and resources out there for people with Asperger’s in 2021?

¹Aspect is a very good government-funded organisation. They have key workers that get assigned and best suited to us. They help with whatever you struggle with, or they can simply just listen if you need to vent. Aspect is amazing and has been the only constant support.

What kinds of treatment have you been prescribed for your conditions, and how successfully have they worked for you?

I’ve been prescribed various different antipsychotic medications and antidepressants. All they did was make me gain weight and sleep all day. I’ve an eating disorder as well, which made the gaining weight part very traumatic for me. As well as it has made my legs swell up and walking now feels like walking on glass or pebbles.

When did you first become interested in cannabis?

My partner smokes it for his pain. He’d be on the couch not able to function properly if it wasn’t for cannabis. He kept trying to convince me that it would help me. I kept trying and nothing worked. The odd time we’d get something that suited me. We discovered I have extremely low tolerance for THC. So now I only use CBD products with low THC.

When did you start to consider using cannabis therapeutically/medicinally, and how has using it in this way helped you?

I’ve tried it on and off for various different reasons. Summertime last year, my partner got ²Orange Bud. But it was very low in THC, so I tried some and to my amazement I felt normal. My mind wasn’t racing, I wasn’t constantly panicking. I was able to eat without getting sick. I could walk without feeling like I was walking on glass. Any pain I had, physically or mentally, it either went away completely or it was at a very manageable state. I got quality of life back, which is amazing.

That’s incredible, I’m very pleased to hear that. How have conventional medications helped with your conditions, compared with cannabis?

Other medications either made me worse or didn’t do anything at all. Cannabis has vastly improved my life. My own family has said there’s a huge difference since using it.

What’s your viewpoint on the Medical Cannabis Access Programme?

I think it’s great. They need to add all health conditions to the waiting list. I think it should be legal and regulated now, so our sick, including myself, can have safe access. I think we should do it the way Holland has done it. Legalise it, regulate it. Let people grow three, four plants at home. They should keep it illegal for dealers to sell it; only legal businesses can sell it. That way there’s no sprayed or chemically-grown cannabis being sold. Only the natural plant being sold. 

How important is the full legalisation of cannabis in Ireland for you?

Very important! (Without it) I wouldn’t be able to walk into town. I wouldn’t be able to leave my house to do simple things like shopping. I wouldn’t be able to do basic house work. 

Do you believe it can happen organically in Ireland, or will we need to see cannabis reform in the UK before it’s taken seriously here?

Not 100% sure. I think our government will probably wait till England follows suit with the States and Amsterdam, before they’ll take it seriously. I personally think Ireland should take note from Amsterdam. Also, I’m sure the EU has already acknowledged cannabis as a medicine, so Ireland can only refuse for so long. 

Emily, thanks for chatting with me. I’m glad to hear that cannabis has benefited your life and I wish you all the best moving forward.

References:

¹ For more information about Aspect, check out this recent Evening Echo article:

https://www.echolive.ie/corkviews/arid-40236755.html 

² To learn more about the Orange Bud strain, see the following page on Leafly:

https://www.leafly.com/strains/orange-bud 

Are We There Yet? – The Long Journey to a Greener Ireland

Nicholas takes a look at the long road that awaits Ireland in seeing cannabis reform and the hurdles it currently face.

As the western world changes its perspective on cannabis, medicinal laws are introduced, criminal records purged and new jobs created from the procurement to the retail of the plant, have all become facets of a world that is loosening its constraint of the drug.  America leads the western world in this change with, as of today, 11 states allowing for recreational use and 34 states allowing for medicinal use,[1] there are still many countries that are dragging their heels on the issue.  This is no different in Ireland where cannabis remains illegal with little optimism on the horizon.  The history of the Emerald Isle and the plant dates to the April 1st, 1937 where the Dangerous Drugs Act of 1934 was enacted.  This act replaced the UK act of the same name to fulfil the Free State’s revision of the International Opium Convention.  This saw the Free State outlaw weed and cannabis resin. 

If we were to go farther back into our past with the drug, it would surprise some that there is a strong possibility that it was one of our own that introduced cannabis to western medicine.  Limerick native, Sir William Brooke O’Shaughnessy, a physician renowned for his scientific work in pharmacology, chemistry, and inventions in telegraphy, was said to have brought cannabis with him back from his expedition of India in 1841.  O’Shaughnessy touted its medicinal benefits, mainly in the areas of pain relief and a range of therapeutic purposes.  Its use became popularized in England due to his revelations as Cannabis Indica had officially arrived in western medicine, remaining popular within medical groups until the early 20th century.[2] 

The Dangerous Drugs Act was not enough to quell usage on the island as cannabis saw a rise in consumption in the late 1960s.  The government established a Working Party on Drug Abuse in 1968 to analyse the extent of drug abuse in Ireland.[3]  In 1971, the group published a report on the recommendation that the legal and medical status of weed should remain under review, it also put forth prison sentences for the crime of possessing small amounts of the substance.  This was scaled back a bit in 1977 when the Misuse of Drugs Act replaced the 1934 legislation.[4]  Cannabis now had been placed in a different legal category to other drugs which saw discretion used by the Gardai when arresting recreational users and little push for prosecution depending on the expense of the substance seized.  This brings us up to today where the laws remain.  Today if caught with cannabis first time, you may get a fine of €1,000, on the second offence a fine of €2,500 and a third conviction may result in a fine of more than €3,000 and time spent in prison. 

Those caught in possession with the intention to sell are hit with harsher fines and sentences.  NORML, an international organisation representing cannabis users worldwide has an Irish branch in operation to provide a support network for those seeking the normalisation of cannabis consumption and introduction of laws pertaining to medical, spiritual and recreational uses.  NORML Ireland supports decriminalisation and is one of many Irish institutions founded to campaign for cannabis reform. [5]

The promising future of medical use first appeared in 1998 as regulations under the Misuse of Drugs Act 1977 listed cannabis as a schedule 1 drug, separating it from harmful narcotics.  In 2002, medical trails began on Nabixmols (Sativex), a cannabis extract used to treat neuropathic pain, spasticity, and other symptoms of multiple sclerosis, in a Cork hospice and Waterford Regional Hospital.  In 2016, Tristan Forde, a 2-year old boy with a severe form of epilepsy known as Dravet syndrome, became the first recipient of a licence for medical use of cannabis oil.[6]  This development was a giant leap forward in cannabis legislation and was described by medical professionals and campaigners as hugely significant in the quest to provide the public with remedies for chronic pain and seizures.

Ireland’s most notable pro-cannabis campaigner Luke Flanagan was elected into the government as an independent in 2011.  This was a breakthrough in the discussion of cannabis reform in Ireland as in 2013 he proposed a motion: “That Dáil Éireann calls on the Government to introduce legislation to regulate the cultivation, sale and possession of cannabis and cannabis products in Ireland.”  The motion was, as expected, defeated and the same year he introduced a private member’s bill, The Cannabis Regulation Bill.  The bill never saw a second reading.  In 2016, Gino Kenny, a Solidarity-People Before Profit politician successfully introduced a private member’s bill to make cannabis available for medicinal use.  Kenny has been a big proprietor of the induction to medicinal cannabis and was instrumental in getting the Medical Cannabis Access Programme implemented.

A big reason for the development of cannabis reform is simply due to foreign influence.  In 2018, when Canada passed a bill to legalise cannabis, then Taoiseach Leo Varadkar indicated there was some consideration given to the decriminalisation of the drug.  Unfortunately, developments closer to home, namely in the U.K would be the catalyst to lead to the way for more serious discussion from the Dáil regarding decimalisation.

All the progress made in the last 4 years came to ahead in 2019 where the Health Minister, Simon Harris signed in legislation that enabled the Medical Cannabis Access Programme to come into effect.  The programme is operating on a pilot basis for 5 years and will facilitate cannabis-based products for medical use.  The scheme was constantly delayed due to insufficient knowledge of quality-assured cannabis suppliers along with the constant hurdles faced with finding appropriate cannabis-based solutions in line with the requirements outlined in the schedule 1 of the regulations.  This is one of many challenging aspects faced with how the Dáil handles such issues.  The obstacles faced in finding an external supplier could have been avoided through cultivating the herb at home. Ireland’s climate is more capable of growing cannabis than the Netherlands, as stated by Dr James Linden of Greenlight Pharmaceuticals.  While hydroponic labs are an option for cannabis supply, Ireland’s temperature climate holds less concern for excessive heat, an issue that plagues the Netherlands’ outdoor cultivation.  Linden asserted that areas such as Carlow, Longford, Donegal, and Derry may be suitable locations for weed farms, adding in order the satisfy the demands of the future, the country would need a massive growth area.  The cost of setting up such a resource would be around €15 million.  The potential alone for growing marijuana on Irish soil introduces additional tax revenue from exporting to a global market as well as a newly founded industry for job creation.

Under the scheme, medical consultants can prescribe weed-based treatment for patients with conditions such as severe treatment-resistant epilepsy, nausea and vomiting associated with chemotherapy and spasticity associated with multiple sclerosis.  Though the prescription will only be made available after all other treatments have been exhausted leading to some frustration over the scheme’s execution and positioning as a last-resort treatment for these illnesses.  The new legislation also gives leeway for pharmacists to dispense medical cannabis for the cost of any other prescription. 

Still, a lot has been left to be desired.  As of June, of this year, no one has been prescribed medical cannabis through the scheme with Deputy Gino Kenny stating:

“As of now, not one person has been prescribed medical cannabis under the access programme. It is an utter travesty that despite years of campaigning by many families and individuals, we are still at this place. I cannot emphasise enough the effect this is having on those who are still desperately waiting for this treatment.  It is welcome that greater access to medical cannabis is referenced in the Programme for Government, but it is deeds, not words that will give people access to treatment. The new Taoiseach Micheál Martin has spoken a number of times in the last Dáil about the need for the commencement of the Medical Cannabis Access Programme. It is now imperative that the access programme is commenced immediately to deliver the long-held promise of providing legal and medical access to medical cannabis products for those that need them.”[7]

This is compounded by the realisation that many families with licences are not being reimbursed the costs in procuring medicinal cannabis.  Licence holders are currently facing monthly bills of €1,200.  Under the Department of Health guidelines, the HSE is said to meet the cost of the products under the long-term illness scheme, medical card scheme and drug payment scheme but this has yet come to pass.  Solidarity TD Mick Barry said:

“Families in an already difficult situation are now facing huge uncertainty and the fact that nobody seems to be able to give them a straight answer only adds to their concerns.  Families granted access to medicinal cannabis under the compassionate access program cannot be expected to pay out €1,200 a month — where is the compassion in that?”[8]

As it stands, the scheme seems to be nothing more than hot air.  While the intention is positive and implies helping thousands suffering from easily treatable illnesses, in practice it appears to be a farce.  A dead-end proposal to keep cannabis campaigners at bay while operating under the guise of providing the public with medicinal cannabis-based solutions.

Nevertheless, Ireland still has a long road ahead of itself in seeing cannabis regulated as a substance no different than nicotine and alcohol.  While recent legislation yields fleeting moments of optimism, it is being met with considerable opposition.  A 2019 study published in the Irish Medical Journal outlined the main issue causing such pushback is the fear of usage among adolescents with risks of dependence.  At the end of the M.C.A.P trial, it is doubtful that these beliefs will change even with proposed laws and regulations cutting out the black market, which stand as the main access point for teenagers. 


[1] https://www.businessinsider.com/legal-marijuana-states-2018-1?r=US&IR=T

[2] https://medium.com/@dubhempmuseum/sir-william-brooke-oshaughnessy-medical-cannabis-pioneer-c94798fd7722

[3] http://www.irishstatutebook.ie/eli/1934/act/1/section/31/enacted/en/html

[4] http://www.irishstatutebook.ie/eli/1977/act/12/enacted/en/html

[5] http://www.norml.ie/

[6] https://www.irishtimes.com/news/health/cork-boy-3-gets-licence-to-use-cannabis-for-medicinal-purposes-1.2916977

[7] https://ginokenny.com/2020/06/29/calls-on-new-government-to-break-the-deadlock-on-access-to-medical-cannabis/

[8] https://www.irishexaminer.com/news/arid-30981797.html

Vera Twomey | Cork | 21.11.2020

Vera Twomey‘s daughter Ava suffers from Dravet’s Syndrome – a rare and severe form of epilepsy which causes multiple seizures a day. Twitter: @Veras1

The attention your 2017 sit down protest and your 2018 protest walk from Cork to Dublin drew are seen by many in Ireland to have been highly influential in seeing the Medical Cannabis Access Programme established last year. What was your reaction to its announcement? When the MCAP was announced, we were so delighted. We thought that hopefully the efforts that we’d made for Ava, what we had done had resulted in some visible change. That action had been taken and that something positive would be on the horizon for us. Unfortunately, the compassionate access programme has really turned into a trojan horse. I feel like there’s certain people out there that talk about cannabis being a trojan horse, which isn’t true. But although nobody is suggesting that medical cannabis cures everything, it is certainly the most effective medication that we’ve encountered and I feel that the compassionate access programme is the trojan horse, not the cannabis itself. Because nobody has been granted a prescription under the compassionate access programme because it’s not up and running. And so an individual licence is the only way that you can access medical cannabis in this country. So, although we were hopeful that something would come from it, it helped no one. It’s just been a token gesture up until now by officialdom.

Has the Medical Cannabis Access Programme been somewhat successful in treating Ava’s condition? Absolutely not, not at all. The cannabis access programme has been of no consequence to our family whatsoever. Our licence was granted on an individual basis and all of the other patients who have been prescribed medical cannabis in this country are getting their medical cannabis via an individual licence. So not only has the CAP not benefitted Ava individually, it hasn’t benefited anybody broadly because there’s nothing there. There isn’t even a product that’s attached to the programme as of yet, in the sense that they haven’t agreed prices on the medication. So they can put it out there and say that there are four products now on the compassionate access programme. Yes, they could be on the programme on paper, but in practice, nobody is getting access to anything. So, none of this plan is very grounded in reality. I would totally agree with that.

If the MCAP trial is successful, do you see the government leaning more towards cannabis reform or do you feel there will still be considerable opposition? Well the thing is, if the Medical Cannabis Access Programme was operational, there might be an opportunity for change or for adjustments in the opinions of politicians, civil servants and the medical profession. But they have created a programme that isn’t switched on, essentially. So therefore, there’s nothing positive going to come out of the CAP as it stands. The only thing that came out of the CAP was… It planted the idea in people’s minds within the country that this issue was sorted and that people seeking medical cannabis were being helped. But that’s not the case at all, unfortunately. It seems to have swept it under the carpet, as far as I’m concerned. Weren’t they seen to be doing something? They had the press conference, they made the statements, they had the paper. What they’ve done has only been of benefit, possibly, to their own appearance to be doing something, because it’s not helping patients anyway at all.

The government has made their views clear that concern for adolescent usage is their main deterrent to recreational cannabis legislation, but what do you feel is the reason they’ve been so hesitant with medicinal cannabis? Golly, there’s a question! So I think it’s a lot of reasons. One of the reasons I suppose is that the word cannabis has an association with people using it recreationally. And I think at the beginning, when we started back in 2015, there wasn’t the knowledge in this country about medical cannabis and the many studies that people were doing in different countries. I think that people genuinely didn’t know, so that was an obstacle. Engaging with people at the beginning was difficult, because you almost had to explain that it is a medicine, that it is possible, that it’s proven to work. 

Also, the government is referring to Doctors then who are practising for many, many years, who have an ingrained opinion about cannabis. They’d have a certain bias against it, yeah. The bias is there. So unfortunately, a lot of the people that government Ministers would be listening to would be medical people with an opinion that pharmaceutical medication is the way forward. Yeah. Not cannabis. So that was difficult But also, in the background you’ve got the lobbying by the pharmaceutical companies which is very real. And you know there is a lot of industry surrounding pharmaceutical companies in this country. They have a lot of power, a lot of money to be able to push their viewpoint forward. And I do think that at some level behind the scenes, that was part of it too. That if they granted medical cannabis to one person legitimately, it would open the floodgates for other patients. 

Really, when it comes down to it, the pharmaceutical companies… they’re running a business. They don’t want to lose patients. And people like the epilepsy patients for example, are a very valuable source of income for pharmaceutical companies. Because, you could be a person that could be diagnosed with epilepsy at eight years of age. You may be on pharmaceutical medication for the next forty years. So you’re a steady source of income. You’re a steady source of income, and let’s be real about it. Ava has not been admitted to hospital since she started her CBD and THC oil in 2016. She has not been admitted to hospital in four years, Richard. That’s amazing. Isn’t it? And I mean, Dravet’s Syndrome, that Ava’s got, is the most hideous diagnosis of epilepsy that you could really get. I was listening to your interview with 1Mary Biles on the Cannabis Voices podcast yesterday. I remember you saying towards the start that Ava was getting over 200 seizures a day at one stage, when she was very young. 

Yeah Richard, she was. I never came out and gave the real figure of how many seizures Ava would have a day, I kept it at twenty and thirty seizures a day, an amount that people could understand. Because it’s very difficult to understand how a child would even have time in a day to have 200 seizures. But if you talk about the different kinds of seizures, there are so many different types. She had them all. I sometimes think Ava was having seizures that were probably unique to her, they didn’t even have a title. So yeah, they were vicious. And even when she was a toddler, she was having those? She started when she was four months old. Our first seizure, she was vaccinated that morning at eleven o’clock, ‘cause I remember it well. It was ten to eleven (when) we went in (and) she was vaccinated. She had a forty-five minute seizure that night, and she was four months old. And d’you know, I remember it… but it was so shocking. It’s a blur, to be honest with you. Getting back to the question, there’s a lot of reasons why there hasn’t been progress. And the unfortunate thing in Ireland is that there’s not an opportunity for the medical professionals to get proper education surrounding medical cannabis in this country at the moment. Yeah. I was speaking to Dr. Órfhlaith Campbell (for an upcoming Green Lens interview) recently and she said that it’s systemic in Ireland. Trainee third level Doctors and nurses are not being equipped with how to treat people with cannabis in any way, nor are they equipped properly with how to treat people who are arriving to them in the hospital having overdosed on dangerous drugs. They’re not being educated on the most progressive treatment options. 

I think in university… I spoke to Professor 2Michael Barnes one time and he said to me that there’s about two hours of education surrounding the endocannabinoid system in a Doctor’s education in college. That’s ridiculous, in an entire course? Yeah. How long is the course, seven years? That’s appalling. The education is very necessary, but it has to be provided by the right people. Somebody qualified to train the Doctors, but also somebody who the Doctors can be comfortable with and respect as well. How much of an impact do you see the Citizens’ Assembly having on reform? Why do you think they’ve delayed the announcement of an assembly date for so long? I thought that it was going to be a positive thing. I was a bit concerned that I didn’t understand how it worked. I said I’d give a buzz and ring them and I spoke to a lady there and she explained how it works and so forth. And I asked her, when did she think that our issues surrounding the cannabis would be raised. And unfortunately, she said to me that she thought it could be more than a year, at least. So it sounded like it could be up to two years, because there’s several other issues that the Citizens’ Assembly are going to be addressing before the cannabis issue. So regarding the Citizens’ Assembly, I thought it was very disappointing.

So it’s in the pipeline after several other assemblies. You’d wonder why they’d bother announcing it as soon as they did, if they weren’t ready to announce a date. I think it was to make a show that something was being done about it. It’s a good sound bite, it’s a good thing to be able to comment on at the Dáil (the Lower house of Irish legislature) that the Citizens’ Assembly was going to be done. But we need action now. We need assistance now. We need the CAP up and running now. We don’t need to wait another two years for the opportunity to talk and three more years for reports and findings and this, that and the other thing to be done. We need action, not talk. The governments of Ireland and the U.K both seem very reluctant to be proactive about cannabis. I think Matt Hancock over in the United Kingdom is a grave disappointment as well. And he has made promises to mothers over in England, Scotland and Wales regarding the delivery of prescriptions for their children and reimbursements for the medication and nothing has come to pass. It’s very, very difficult for people over in the United Kingdom. They’re nearly worse off than people here in Ireland, to a degree.

I suppose because there’s a far bigger population in the U.K that they would feel the urgency that bit more than they do here. There is a much more sophisticated organisation of people over in England than what there is in Ireland at the moment campaigning. They have websites, they’ve even set up tutorials and information for Doctors and so forth. But still, even with all that, the resistance is palpable. So it’s very grave, because you have patients on the medication whose families aren’t being refunded for the cost of the medication. You have other patients who need medical cannabis and can’t get prescriptions, so there’s problems on every level, for everyone. With us, we’ve got the prescription for our medication, but they want to take the delivery of Ava’s prescription away when the Covid restrictions are lifted. So I feel like… You’re persecuted at every step, with anything surrounding cannabis. It’s difficult to contend with at times, you know?

Your televised appeal to Leo Varadkar (the Tánaiste, or Deputy Head of Irish government) during your acceptance speech at the Irish People of the Year Awards 2018 also had a profound effect on many Irish people. How has Varadkar acknowledged that speech. Has he remained in consistent contact with you since then? I was never in consistent contact with Leo. I’ve met Leo twice. The night of the Person of the Year Awards is interesting actually. I had a few words prepared. They were similar to what I said when I came up on stage, but what happened on that evening was, I went out for some air. The room was very warm and I suppose you would be nervous, ‘cause there was a lot of people there and with all our finery I didn’t want to fall off the stage or anything like that, you know? Vera laughs So, I went out for some air and I came back in and I was standing inside the door just having a conversation with a lady and Leo walked along. I walked up to Leo and I said: “Hello Leo”. It was the first time that I had met him in person. And I said to him, “My name is Vera Twomey. I’m Ava Barry’s mum. I want to know what you’re going to do about the legislation regarding the medical cannabis”, because the bill was being stalled at the time. 

He put out his hand to me to distance himself from me. He told me that the bill was completely flawed and it was going nowhere. And he was on a very tight schedule and he had to go. And he walked away from me. That’s incredible. So, I was genuinely mortified. I was left there standing, he had just said his few words and walked away from me. And I actually just started to cry. The tears were in my eyes. I literally stumbled back to the table. My friends and family were saying: “What happened to you?” and I told them. So, I grabbed a pen and a piece of paper, ‘cause before I had met him, I had considered talking to him directly. But I think I was nervous to do so. But after he spoke to me like that, I decided that’s fine. If that’s the way he’s going to talk to me I’m going to talk to him from the stage. So I amended the few words I had made. So that’s how I got up on the stage and spoke to him directly. I also met him another time after, when he attended a meeting at the Castle Hotel inside in Macroom and on the previous day a mother had contacted me begging me for information for medical cannabis to help her child and she had sent me a message about the child who had had fifty seizures the previous day. And when I went into the meeting room, I went over to Leo and I asked him again for his help. And I showed him the message that the lady had sent me and he didn’t flinch. Really? So, he said to me inside in Macroom, “I thought the medical profession was dealing with that”. And that was all that he said. 

And I was asked to step away from him then after that. I’m so sorry that you were treated that way. Well, I can assure you Richard that I approached him as one should approach anybody. I approached respectfully. I was in no way threatening or anything like that. And that’s the response that I got. So Leo has been… he’s not somebody that I’ve been in consistent contact with. He’s not exactly been an ally to you. No. Certainly not, no. Your #TalktoVera hashtag has been trending on Irish Twitter. Can you tell us some more about it and what you hope it will achieve? I put up a few posts about the delivery of the medication and so forth. And somebody said to me, just last night, that it was fine to be putting up Twitter posts, but you needed a hashtag to get trending.

I know what she means, but I didn’t have a grasp on how many mentions you needed on Twitter for something to trend, d’you know what I mean? So, I asked people last night to use the hashtag #TalktoVera, because I’ve been trying to get on to Stephen Donnelly (current Irish Minister for Health). I’ve requested a meeting in any format; Zoom, a telephone call, at any location, whatever suits, you know? To be as reasonable as possible. And I’ve been trying to do that since September I’d say. That’s appalling. And he hasn’t replied in any way, has he? Well, to be honest with you. Before he became the Minister for Health, he had contacted me. I had spoken to him a couple of times on his mobile. I have his mobile number. But since he became the Minister, he will no longer engage with me or speak to me on the telephone. So that’s disappointing, because he would have spoken to me prior to being the Minister. So he would have easily had a measure of me and the way I speak and so forth. So I’m not new to him. 

But no, there’s been no meeting. I’ve tried contacting numerous other politicians to get attention surrounding getting the delivery of Ava’s medication made permanent. But we needed something on social media to highlight the issue. So we were using the hashtag #TalktoVera. And it started trending last night and I thought it was funny. Vera giggles It was trending last night with Joe Biden, Jesus Christ and Mary Robinson. Richard laughs That has to be a sign Vera, you’re up there with the greats! I just laughed and thought, “God, I’m in good company”, you know? Well that speaks volumes about how the everyday people of Ireland feel about you. Well Richard, I have an awful lot to be grateful for the everyday people of Ireland for. ‘cause without ‘em, I might be without my girl, you know? That’s the bottom line. ‘cause the support for her… Her birthday is this week, right? Yeah. And we got a card last week. Her birthday isn’t until the week coming, but a lady sent a card and I just thought: “After all these years, she’s still in people’s hearts. People are still sending her cards and thinking of us.” And I put up a photograph of the card and I mean the messages…. Message, after message, after message, and the support… It’s just incredible. And it makes you wonder, “What is it that is holding the government back?” Because the public support for the introduction of medical cannabis is there, it is there. I would say it’s a majority for sure Vera, yeah. I agree, I think so. It’s just taking such a long time and so much effort to move this forward and it’s moving so slowly. Surely if you have that much public support from people around Ireland, then it’s only a matter of time until you succeed. I hope so. Because we have a problem with delivery (of medication) at the moment. But I will always try my best to highlight the issue for as long as anybody is interested in talking to me about it. 

Because I’m proud of Ava and in a way, I’m proud of cannabis, if that makes sense? Because it saved her life. And you need to share the information, because there’s other little people. There could be somebody just today, at four months of age, that has their first seizure. And there’s another family starting on this road of dealing with chronic epilepsy. That could be starting as we speak. And so you’ve got to share the information and you’ve got to try and help people. I owe it to the people that helped Ava to continue and highlight things. Thank you for everything you do. You should be proud of yourself as well, above all else, for helping your daughter so much. Thank you very much for lending me some of your time for this interview, I really appreciate it.  Thanks for talking to us, bye.

References:

* Vera’s book, For Ava, can be purchased here from Mercier Press:

https://www.mercierpress.ie/irish-books/for-ava/ 

1 The Cannabis Voices podcast recently had Vera on for an interview which can be found at this link:

https://cannabisvoices.buzzsprout.com/989611/6461791-vera-twomey-fighting-for-ava

2 More can be learned about Professor Michael Barnes here:

https://www.profmichaelbarnes.co.uk/about