Illegal cannabis and ‘grow your own’: the issues for children with complex health conditions
A position paper by Medcan Family Foundation
Introduction / Background
In November 2018 the government changed the law to make it legal to prescribe cannabis-derived medications in the UK. Cannabis for non-medical or recreational use remains illegal. As a Schedule 1, Class B drug, those caught in possession of cannabis risk a maximum penalty of five years imprisonment, with cultivating carrying a maximum sentence of up to 14 years.
Despite the fact that children, young people and their families were at the centre of the campaign which ultimately led to the change in legislation, five years on only three children have been able to access a prescription on the NHS.
With no clear route to NHS funding – and no paediatric consultants willing to prescribe privately – we know that many desperate families are driven to break the law and give their children illegal cannabis. It is not just an issue among epilepsy patients, an estimated 87.5% of paediatric hospices have children under their care being given non-prescription cannabis therapeutically.
It is no longer an option to ignore this issue, and the potential harm that children and their families are being placed at risk of.
We acknowledge that there are a number of campaigns fighting for drug reform in the UK, including the legalisation of non-medical cannabis use and home-cultivation. We understand and respect the needs and wishes of other patients when it comes to how they consume their medication and their right to advocate for this.
However, as an organisation the campaign for wider cannabis legalisation is not within our scope, and as such we do not endorse or support it. Instead we remain focused on our mission to see prescription, cannabis-derived medications available to all children who need it to control their chronic illness, via the NHS and under medical supervision.
Cannabis that is bought on the street or grown in uncontrolled conditions is considerably less safe and precise than that found in cannabis-derived medicines, which are manufactured by licensed producers under strict EU-GMP guidelines and prescribed by a specialist doctor who can provide clinical oversight. As such they are not appropriate for paediatric consumption or complex neurological conditions.
Medcan’s founding principle is that no child should have their life cut short when there is simple and safe treatment available. We firmly believe that no family should be forced to access illegal, unregulated cannabis, by any means, placing their child and themselves at risk of harm. In the following sections we set out why this is.
- Product safety
Giving a child illegal cannabis poses significant risks that extend beyond the legal implications. When dealing with any medicine it is crucial to understand the composition of the product and any potential safety hazards associated with it, but this is even more paramount when it comes to children with complex health conditions such as epilepsy.
Illicit cannabis lacks the quality control measures of that which is legally prescribed, making it challenging to ascertain its purity and potency. While there are still some issues with transparency and obtaining certificates of analysis for cannabis-derived medicines, we at least know the levels of CBD and THC in these products, and that they have been produced under strict EU-GMP conditions. This certification ensures that the products undergo rigorous testing for contaminants and meet specific quality benchmarks, providing a level of assurance for the paediatric patients and their families.
Levels of tetrahydrocannabinol (THC), the psychoactive component of cannabis, tend to be higher in illegally-obtained cannabis, and while this is known to have some therapeutic benefits, it can also act as a pro-convulsant in certain doses, potentially exacerbating seizures. This counterintuitive effect underscores the need for caution and understanding what’s in a product, when considering cannabis-based treatments for paediatric epilepsy.
It’s also important to recognise that cannabis contains many more cannabinoids beyond CBD and THC – around 144, in fact – and compounds such as terpenes, each with potential therapeutic effects. There is still more research needed, but it is likely that these other compounds and how they interact with each other may play significant roles in alleviating symptoms.
Another notable risk stems from the absence of clinical guidance for those using illegal cannabis. Unlike prescribed cannabis-derived medicines and other pharmaceutical drugs illegal cannabis lacks standardised dosages and usage guidelines, making it difficult for parents and caregivers to ensure safe and effective administration. This lack of medical oversight becomes even more problematic when dealing with the complexities of epilepsy.
Then there is the issue of the micro bioburden found in illegally grown cannabis and the risks associated with this. Cannabis is prone to contaminants such as heavy metals, pesticides, bacteria, and other impurities that can be present in unregulated products. Extraction methods involving butane gas, Isopropyl or Methyl alcohol or ethyl could remain present as residues, posing further threats to the purity of the product.
All of these risks pose an even greater threat when you consider the fact that many children with severe epilepsy also live with other developmental conditions and as a result are often non-verbal. Their inability to communicate clearly any adverse effects they may be experiencing means caregivers may struggle to recognise and address potential side effects promptly, compounding the risks.
I bought some oil illegally for my son through a contact I met through social media. I was terrified to break the law but we were desperate and didn’t know what else to do, with no NHS access and no doctors prescribing privately either. I felt I had no choice—nothing else was helping him. “I started with a small dose to see how he would respond. I could tell almost instantly that something was wrong. He started acting strangely, his eyes rolled back in his head and his heart was racing. The seizures started soon afterwards and seemed to go on forever. I reached out to some parents through the support group and they explained that too much THC can actually cause seizures. I felt so ashamed, I didn’t dare tell my son’s doctors that I had given him cannabis. - Anonymous.
The risks associated with giving children illegal cannabis extend beyond immediate health concerns. They could lead to the loss of access to essential support services, hindered communication between parents and healthcare providers and the consequences associated with illegal cannabis use can create a barrier to open communication between caregivers and vital services. Parents may be reluctant to disclose their use of illegal cannabis, fearing legal repercussions. This reluctance can lead to a loss of trust and hinder the collaborative relationship necessary for effective paediatric care.
Families of children with complex health and care needs often rely on a whole network of services and support to manage their conditions, such as social care, respite, and Speech and Language Therapy. While there is still a stigma and lack of education to contend with, having a legal prescription for their cannabis medication goes someway to ensuring they can continue to access this support. Without that legal recognition, families may find themselves excluded from these state-funded services. This not only has a detrimental effect on the child, but the whole family.
The lack of prescription also presents challenges in maintaining consistent and appropriate care throughout the child’s life, children taking cannabis-derived medicines often require multiple doses throughout the day for optimal therapeutic effects. If the medication is obtained illegally, schools cannot legally administer it, resulting in the child not receiving the full therapeutic benefit. Even a legislation change in the UK, permitting the use of cannabis for recreational purposes, would do little to resolve these issues given that only regulated medicines can be administered by caregivers.
Children with chronic conditions often face a lifetime of clinical care. Legal access to these medications ensures that their treatment plans can be consistently monitored and adjusted based on their evolving needs. The legal status becomes even more critical as these children transition into adolescence and adulthood. If a child who has been benefiting from illegal cannabis products requires full-time residential care in the future – not uncommon in those with severe epilepsy – they may be forced to discontinue its use, with potentially severe consequences for their health and well-being.
Burden on caregiver
While some patients feel that growing their own cannabis is a better and potentially safer option than accessing it on the street, the challenges this would present for the caregiver of a severely ill or disabled child, are often overlooked.
Caring for a disabled child is a huge undertaking, the strain of which can impact the health and well-being of the whole family. Parents and siblings often struggle with mental health issues, such as anxiety and PTSD due to the trauma they have lived through and caring for a child with a disability or severe health condition can lead to a significant strain on relationships.
Cultivating cannabis is also a demanding task, requiring specific knowledge, resources, and time commitment. The emotional, physical, and financial toll of caregiving can mean that the prospect of growing cannabis is simply not an option for many parents, not to mention the lack of time to dedicate to it.
The burden of being solely responsible for your child’s medication is an immense weight for any parent to carry, especially when you take into account the existing stress of their lives. Any issues with the crop directly impacts the child’s medication and ultimately their overall health, adding extra anxieties that will take a toll on the caregiver. Suggesting that parents should ‘grow their own’ without fully understanding the complexities they are managing is not only impractical, but also overlooks the nature of their responsibilities and the unique challenges they face daily
Get up and prepare Charlie’s prescribed anti-epileptic medications.
Administer medications – most mornings this is a fight as he doesn’t want to take it. I have to take him into the living room and hold him down flat. Then we have to make sure that he takes it all because if he tries to spit any out, that can impact seizure control for that day
Give Charlie a drink, make and feed him his breakfast, change his nappy and get him dressed for school. (We sometimes use hoists to help us move him around, but even just getting him into them is such a fight and so time consuming that in reality we usually just carry him).
Leave for work
Charlie gets the bus and Ali leaves for work. Both of us work throughout the day until he returns from school.
Charlie arrives home. We change his nappy, give him his cannabis medication and wash his clothes if he has had an accident during the day. We keep an eye on him and keep him entertained while managing other household tasks.
Prepare and cook dinner for Charlie. He has a soft chew diet so might not be the same recipe as us. Feed Charlie and tidy up after.
Another nappy change. At this point we will look through information sent to us and required to fill out or arrange appointments. These can range from EHCP plans, speech and language, physio, hospital appointments, school activities, Motability even filling out grant applications.
Charlie’s evening medication
Get Charlie undressed, showered and changed with overnight nappy into bed.
Cook dinner ourselves, tidy up.
Administer Charlie’s last dose of cannabis for the day.
Ali and I go to bed.
There are many reasons why illegally produced cannabis should not be considered acceptable treatment for children with complex health needs and we fundamentally believe it is wrong that families are being put in this position. Given the existing challenges facing families and caregivers they should not be placed under the additional strain of having to break the law and risk their child coming to harm, losing access to services and coping with the considerable burden on their own mental health.
As an organisation, Medcan Family Foundation continues to push for action from politicians, the private sector and medical groups to accelerate access to safe and approved cannabis-derived medications on the NHS and save lives.