PATIENT
STORIES
Although there has been a promise from the government to introduce a medical cannabis access program for since 2016, little over 40 patients have access to the medicine in 2020, and the cannabis access program remains in limbo.
Many patients find that cannabis is the only thing that can alleviate their pain and suffering and are turning to the black market to source their medicine, unsure what product they are getting, what potency and if there has been any unsafe additives being used to increase profits for criminal gangs.
These patients are ordinary people like me and you. They should not be criminalised for treating themselves with medicinal cannabis, when conventional medicine has failed them.
What would you do if you were in their position?
DEBORAH
DOWNEY.
My name is Deborah Downey. I am the mother of a 16 year old child who has Lennox Gastaut Syndrome. We are in receipt of a ministerial license which gives us access to medical Cannabis.
Abigail's life before medical cannabis was nothing bar horrific. At the age of 6 she was at main stream school. She could cycle a bike. She was running and playing every day lots of friend. Life was good. She was a happy little girl. At the age of 6 Abigail had her 1st seizure.
I could never envisage what was to come her way. After lots of tests it was confirmed she had epilepsy. Neurologist prescribed medication and off we went. In no time she was on a series of medication. Her seizures were out of control over a ten year period. She had lot the ability to walk on her own. She was in a wheelchair. Her speech was very bad. She was drooling. No energy. Couldn't feed herself. Use a bathroom. Everything had to be done for her. We put her on a Keto diet. She did well for a while then slowly the seizures ramped up and we were back to square one. She had a Vegus Nerve Stimulator implant put in. Same thing good for a while then back to square one. For 10 solid yrs she seized every night. The next day barely able to speak or hold her head up. Body in agonizing pain. I couldn't even dress her. She lay on a couch all day. Couldn't move. She was in a special needs school that she barely saw the inside of. She even dropped under 4 stone at one point. Her suffering was beyond cruel
Over the last couple of years I had been watching different stories on TV and social media about CBD and medical cannabis and how people were benefiting. We started Abigail on CBD. And noticed a difference immediately. All her day time seizures were gone and her anxieties reduced to a stage where she could cope.
This in turn led to medical cannabis. We applied for a license which was an easy enough process for us because we had all the backing we needed. Doctors etc and she meet the criteria. I was also blessed that we had gone to a clinic in London which meant we could have it delivered to a chemist in Newry and we could pick it up.
But with anyone whit a license will tell you. There is alot of paperwork. We applied for a HSE reimbursement which is proving to be a complete nightmare. It could take up to 18mths to get a reimbursement and that's if you meet the criteria. So we have to keep funding her medication in the mean time. Which is soul destroying. But the results of Abigails medical Cannabis is amazing. She started in July of this year 2020.
Her seizures have reduced from 130 to 35 a mth. She's in great form. Her seizures are very small and not so violent. She has returned to school. She trying to do things herself. Like walking and feeding herself. She can take off her pj's and she can put her socks on. She is very very funny little thing. Her recovery from a seizure is really quick. Each seizure used to be from 3 to 5 mins. That's now reduced to under a minute. All of this is transforming her life. She's smiling and laughing. Giving out and been bold and it's great. Gone was the day when Id stand watching the monitor and hoping she would move. so afraid that I would enter her room and God would have taken her.
But to go through all of this and then having to beg a government to make it easier for families like ours to access this plant is scandalous
I look forward to MCAP to be up and running.. I know this whole situation has pushed me mentally, physically, emotionally and financially clean over the edge.
To a better future for all of us.
Deborah Downey
*Also enclosed: A before and after pic of Abigail with medical cannabis. These pics were taken 6 weeks apart.
NOREEN.
My son Michael is now a happy healthy four year-old, far from the situation he was in before beginning treatment with CBD oil for his seizures on January 5th 2018. He has gone from being a constant inpatient in hospital, fed through a tube, unable to smile, eat, drink, cough, control his limbs, lift his head, or engage with his surroundings in any way, to living life, away from the hospital that became home.
Michael’s CBD oil was then, and continues to be privately paid for by me, at a cost of over four-hundred pounds sterling a month. Despite the change in legislation in June 2019, which would see several approved cannabis based drugs available for children like Michael through the Long Term Illness Scheme and Medical Card Scheme, we, or any single other qualifying patient for the Compassionate Access Programme in Ireland, have yet to hold a prescription in hand. Although our neurologist is now ready and willing and legally allowed to prescribe for Michael now, the €1200 per month price tag has made this unattainably expensive.
The battle against the government for the funding of this medicine is ongoing for us, but in the meantime, Michael, through the medicine which we obtain privately, is going to preschool, eating normally, sitting up independently, standing and learning to walk with support. He loves Winnie the Pooh, going for walks, being read to, swimming, horse-riding, as well as so many other activities that are now possible to him. Medical cannabis has changed his life, and mine, and it is my hope that every patient in need of this vital medicine will soon be in a position to access this in Ireland, with the simplicity of any other prescription medicine.
JENNY
DEVLIN.
My name is Jenny Devlin and I'm 34 years of age. I have a degenerative type of arthritis called ankylosing spondylitis and also a chronic pain disorder called fibromyalgia. I also suffer from social anxiety.
During my first pregnancy over 10 years ago, my fibromyalgia symptoms started. It took me a few years to get a diagnosis and then the long journey of medication began. These medications just turned me into a zombie and I couldn't function. My stiffness just got worse as time went on and I was struggling to dress myself most mornings. I had a young child to care for yet I could barely get down the stairs.
A few years later I was diagnosed with ankylosing spondylitis. I have tried three biologics which I had to inject into my leg fortnightly and are immunosuppressants. I reacted very badly to the three of them and was rushed to A and E. I refused to try any more biologics after that.
I had read a lot about cannabis and started talking to other patients who used it medically. As nervous as I was, I started taking cannabis oil and within a few days my stiffness was nearly gone. My mobility also greatly improved along with my mood, anxiety and sleep. I felt more like me again. I asked my rheumatologist at the time about applying for a licence and he laughed at me for using an illegal drug. He is now retired thankfully. I have asked two other specialists and they have told me it's against their hospital policy to apply for licences for chronic pain patients. They recognise it's helping but their hands are tied. It is extremely frustrating as a young woman and mother to be left like this.
Imagine being forced to become a "criminal" just so you can dress yourself, cook meals, go to the playground with your children?! It is morally wrong to deny patients something that can give them a better quality of life. We need medical cannabis legalised so it can be properly regulated and patients can use it safely. This fight is extremely exhausting but it's one I will continue to fight.
JOHN O'
REGAN.
I got my first job with Philips in Holland in 1985 and on my way home after work I would often stop off at a coffeeshop. I normally bought a gram for 10 guilders but if it was a Friday and there was a party on, I’d get a 25 guilder pack. I never once met a criminal or saw youngsters hanging around looking for somebody to buy a few grams for them. There was absolutely no difference between how I lived my life and somebody who preferred alcohol. Both of us were able to live our lives without fear or favour.
And then I moved back to Ireland.
After moving to Cork in 1990 I was out on the town one night and met a few people in Sir Henry’s nightclub who told me where I could buy cannabis. It was in Bishop Lucy Park the next day when I met my first “drug dealer”, a young guy in his mid teens who was selling to people his own age. I met him a few nights later in his more usual spot (an alley next to Shandon Bells) and something very unusual occurred. Two very young teenage girls IN THEIR SCHOOL UNIFORMS were watching us and as soon as I walked away he turned and asked the girls if they were “looking for a deal”. They were, and he sorted them out, lickety split.
25 years later I moved to Kilkee without ever having been so much as stopped by the guards over cannabis. And in the 5 years since then I’ve been raided by the guards 10 times, arrested 5 times and prosecuted 4 times, so far.
I’m now a criminal and am subject to being stopped and searched any day of the week because I’m “a known drug user”. I was even spear tackled onto the pavement one afternoon on my way to the recycling center. I’ve had my electricity cut off for days. I’ve been used by the guards to frighten parents. I used to be a childcare worker but due to my cannabis smoking the guards regard me as a danger to children.
I’m no danger to anybody, do no harm to anyone and yet I’m likely to end up on hunger strike in prison someday. Because I simply can’t accept that our government has the right to imprison me over something that causes no harm. If the government sincerely believes that I’m a criminal and belong in prison, they’re going to have to kill me to keep me there.
Viva lá Revolucion!!
STEPHEN
GARLAND.
Hi My name is Stephen Garland. Professionally an International Event manager with projects in Ireland and Spain where I created and still run Barcelona’s Comedy Festival. In 2016 I was diagnosed with PPMS (Primary Progressive Multiple Sclerosis) after a more than 5 year search to identify the condition. PPMS comes with the caveat of ‘No Treatment, No Cure’ basically you are expected to watch yourself move through the gears of walking with stick to wheelchair. In 2017 I travelled to Moscow and received a stem cell transplant and now 3 years later I can say that I have stopped my disease.
Since my disease first manifested I have always suffered from chronic pain in my feet and lower limbs. I have tried all the pharmaceutical prescriptions but NOTHING works as effectively as Cannabis
I spend a lot of time in Barcelona where I can walk into a dispensary and access freely my medicine but on my return I am once again criminalised in Ireland. I am a patient of the Mater Hospital who have a policy of not supporting applications for the MCAP and I have been refused for 3 years by my consultant.
So I must continue to be criminalised every time I return to Ireland and to be honest I consider it ridiculous. We have had bad laws in Ireland like 8th Amendment and same sex marriage but were brave enough to change them. The prohibition of Cannabis is another bad law and needs to be changed. Patients need the ‘Right to Grow’ or safe access within a regulated industry but it depresses me that what we will most probably get first is an industry designed by big Pharma. Created only to serve their profits and patients will once again become a collateral irritation.
We must be positive and hope that change will come. We need leaders to emerge from the Irish establishment, become educated and make some brave decisions as it legalisation is happening from Uruguay to Thailand to Canada and now a lot of the US.
Time to get ahead of the curve again Eire!
ANN
WILLIAMS.
My name is Ann Williams, I was born on 1-11-1942 .
Throughout my life, I have been lucky enough to have had a strong immune system, resulting in very good health. However in April of 2016 after a rare chest infection and a subsequent XRay, I was diagnosed by my GP with COPD. The diagnosis was later confirmed by a Pulmonary Consultant in Dublin. I was informed, we had “caught it early” and was immediately prescribed an inhaler and nasal spray. That was the start of trips back and forth for yearly and then six monthly check ups. As time went on, I began to struggle more with walking uphill and I found that my energy levels were low and the amount of phlegm was increasing. Going up stairs was becoming difficult leaving me breathless and my sleep suffered . At my 2018 appointment my consultant decided that I should have a bronchoscopy and a biopsy, to make sure “there was nothing else going on” as my spirometry scores were down again, more than he was happy with. At this point I raised the subject of Medical Cannabis, (which I had become aware of for the previous few years.) I was immediately shut down, and told he was not interested in the subject and knew nothing about it. I was sent on my way and told I would have my biopsy results in about ten days. It took almost three months for them to arrive, at which point I was annoyed and disappointed and decided to seek-out another consultant.
I began to learn more about Medical Cannabis and looked at its possibilities. After much thought I decided as a start, to purchase a high quality CBD oil as it was totally legal in Ireland and also readily available. In June 2018 I began taking It and found it relaxing but with no other notable effects. I continued on for the following months trying different types of CBD oils, with varying effects and began to feel that I needed something stronger, which meant of course that I had to buy it on the black market. I was not happy having to do this and it was not a nice feeling for someone who all her life followed the rules, but I had a chronic lung disease and I knew enough to know that as it advanced, it was going to become worse and worse as you gasp for air to breathe.
I was recommended to a supplier and took my first few drops of my Full Extract Cannabis Oil on the 22-12-2018. I administered it sublingually and was very nervous. I lived alone and had to be careful. but I needn’t have worried. Within seconds my breathing improved more than a little. I became more relaxed and could breathe easier. I had been told that the oil was made up of pure CBD and thc ( the illegal part ). All throughout January 2019 my breathing continued to improve. I could walk faster and no longer struggled as much with stairs. My mood lifted and I didn’t have any wheezing in my chest. I stopped using my inhaler also, with no ill effects and stopped taking my high blood pressure medication after learning that taking cannabis would lower my pressure. This was accurate. I informed my GP who sadly didn’t know anything about cannabis but who remarked that when there was training set up for doctors, she would apply. She was pleasantly surprised at how good my lungs sounded and at my request recommended another Consultant in Waterford as I was keen to find out what my spirometer score would be.
On January 29th 2019, my new consultant did a thorough examination of my lungs. This was followed by a full spirometer and breathing tests. On my return to my consultant’s room I was told the wonderful news.....There was absolutely no sign of any COPD. My breathing tests were above normal with an 88% score. I will never forget his words “ Ann whatever you are doing , keep doing it. You are the first person I have met who has had this condition and who has been able to throw away an inhaler. You don’t need a consultant, primary care is all you need going forward , you no longer have COPD”. This was later confirmed by a clear X-ray. The best news of my life and fear and depression lifted.
Fast forward three months later to April 19, and still feeling wonderful I reverted back to CBD as I was by this time out of the FECO. I set about once again looking for a good quality oil and contracted my origin supplier. This led to a further bottle being sent to me and indeed many further bottles from two separate suppliers, none of which worked and all of course from the black market .By this time September 2019 I was left in no doubt that my Copd had raised its ugly head and had returned. I was devastated and realised I had forgotten a simple rule of thumb, that there is a real danger that stopping FECO would likely bring back the symptoms of the disease you have treated. Sadly true for me. (This has been claimed by many including cancer patients, where tumors have regrown once the oil was stopped.) Since then I have continued to try oils from a variety of strains from several different suppliers to no avail. As Christmas 2020 approaches I have no choice but to keep searching. CBD helps, but sadly not enough.
I am happy to include my story here. It is time for all of us to speak out. There are thousands of us who have had to resort to breaking the law for the sake of our health. Many are charged and arrested for growing one of nature’s plants. More tragic are the numbers who are dying or already dead, for lack of this God given medicine. It has to be decriminalized and be available on prescription like any other medicine. Time that Ireland joined the other countries of the world who have done so with such success. At seventy eight years of age, life is still precious to me and I will continue to fight for the right to live it. I need Medicinal Cannabis to do so.