Campaign participants responded to a report that first highlighted the despair and anger of families trying to access medical cannabis in the United Kingdom.
Cannabis Health Talks to Dr. Anne Katrin Schlag, Head of Research at Drug science Campaigner, Director of the Society of Medical Cannabis Clinicians (MCCS) Co-founder with Medcan support, Hanna Dikon about findings and potential changes.
Data collection presents a major problem, especially in the disruption of trust between patients and their physicians. Despair and anger I felt towards the current system.
It also highlights for the first time the impact of having a seriously ill child on parents, caregivers, and a wider family and how medical cannabis has improved things.
Alfie Dinley’s activist and mother, Hannah Deacon, who suffers from treatment-resistant epilepsy, helped recruit the families included in the report.
Alfie, who obtained the first perpetual license for prescription medical cannabis in the United Kingdom, is currently only one in three people who have access to NHS prescriptions.
Hannah hopes that this data will help more doctors better understand that cannabis-based drugs can be safely used in patients.
“We’ve been using cannabis with Alfie for four years now, and we’ve found that what we’re looking at is very valuable,” Hannah tells cannabis health.
“I saw my child very ill, and I was told by a doctor that he might not be alive. Steroids that can cause heart failure, liver disease, and mental illness. I was told that I needed to pump him up, and when Alfie wasn’t always having a sickness, I thought it was amazing data. That’s proof. “
She continues. “I wasn’t aware that doctors didn’t necessarily see it as evidence because it seems anecdotal. My son’s result was a placebo effect for me, a license that said it was totally nonsense. When I tried to get it, I even met a very famous doctor. He had 150 seizures a week and spent most of his life in the hospital, but he wasn’t. “
“I felt the data was really important and no one seemed to collect it. As a regular customer of drug science, I asked them if they could collect it. They decided to do so. I was very fortunate to agree. It’s our children, our proof. “
This study follows another more quantitative clinical analysis published by Charity earlier in his year. Medical cannabis has a 96% chance of significantly reducing seizures For children with severe epilepsy.
This latest report focuses on the experience and human elements of the medical cannabis system.
Dr. Schlag, the lead author of the report, said:
“We wanted our families to talk about what they experienced, what the problem was, and what they were still experiencing. Hopefully this would all of us improve this situation. Will show you how you can work together to do it. “
Dr. Shrug continues. “The type of trauma that parents, families, caretakers, and children are experiencing was very clear. There are many other issues involved besides actual epilepsy that can be demonstrated. It is important to have an article that you can do. “
The report emphasizes that the mental health of the caregivers and siblings of their parents and siblings was compromised as a result of having children with severe illness in their families.
Many parents reported suffering from depression, anxiety, and post-traumatic stress disorder (PTSD) as a result of their child’s condition. This was often associated with a lack of support.
“I remember the neurologist saying it was his job to keep his son out of the hospital. As far as they are concerned, they are doing their job unless you are in the hospital. “Hannah says.
“But Alfie was taking a lot of medicine with horrific side effects and was still having seizures. He was very violent and unstable. He always took care of him. I needed someone to do it. “
Hannah says she felt “not seen in society” when she became a full-time caregiver for her son. She says parents don’t expect to take full-time care when they have children, and reality is causing a lot of trauma. She emphasizes that nothing was offered to parents experiencing the mental health problems contained in the article.
“There is so much sadness and trauma,” she continues.
“Consistent NHS mental health support was not provided. Unless we were hospitalized, the quality of life of my son was irrelevant. The only problem was that we were not burdened by the NHS. So the quality of life for me and my family didn’t matter. “
Now that Alfie has no seizures, Hannah is able to return to work and regain her connection to society. She explains that the importance of the report lies in its ability to highlight the impact it has on the families involved.
This is an issue that is still ignored by policy makers and is excluded when it comes to the discussion of benefits and risk assessment.
“This is why the report is so important because it emphasizes not only the reduction of seizures, but also the financial, mental health, and all that comes with it,” she says.
“I feel like I’ve come into contact with many doctors who lack empathy. That’s why the use of medical cannabis was patient-led, as it was invisible and unheard of for poor families. I think it’s power. They want to do the right thing and help their children have a better quality of life. “
Medical Cannabis Reporting and Education
Both Hannah and Dr. Shrug hope that this report will help educate doctors about all the benefits of medical cannabis.
Dr. Shrug said: “Because this is evidence, it really contributes to opening the eyes of doctors and nurses. This article also aims to relieve suffering, which improves the quality of life of patients. I think I emphasized that it is an important aspect of reducing seizures, which indicates that there are other positive consequences for patients and their families. “
She adds: “Our goal is to make a variety of cannabis-based medical products available to the NHS in the future. By providing this evidence in stages, we have promised patients since it was legalized in 2018. We hope we can make the progress we have made. The progress is poor and we are working to improve. “
“It’s about hope. I hope doctors see this and the NHS’s approach,” she says.
“Cannabis is different [to conventional pharmaceuticals] And it is to reduce quality of life and harm to people with chronic illnesses. We hope that this report will help physicians understand that this is an overall approach to applying the drug.
“The government has promised that this will be widely available, and that policy has failed. There are only three NHS prescriptions for all-plant cannabis. It’s neither right nor fair.”
Hannah adds: “I’ve seen my son change for four years since he took this medicine. I’ve only seen good results. This is a good study long enough to show that it’s safe for him. Therefore, it should be safe for many other epilepsy patients.
“I believe things will change and reports like this would encourage doctors to prescribe. It’s really exciting because I think the dam will break after a few prescriptions on the NHS. It only happens if there is one. “
The student campaign aims to “end stigma” around medical cannabis at this week’s Freshers Week.
Source link The student campaign aims to “end stigma” around medical cannabis at this week’s Freshers Week.