When the Patient's Healthcare Forgot
- Brainz Magazine
- Aug 26
- 10 min read
Berta Kaguako is the Co-Founder and Managing Director for EthVida, a patient educational platform that promotes plant medicine and a holistic healthcare approach. As a patient herself, Berta has made a remarkable transformation, using Cannabis Based Medical Products to manage 7 diagnoses and 50+ symptoms. And now advocates for plant medicine.
When healthcare works, it can be life-changing. It empowers people to live fully, to manage chronic conditions, to heal, and to thrive. At its best, healthcare is more than medicine; it's a system of trust, compassion, and reliability. It provides a safety net when people are most vulnerable, and it uplifts those who might otherwise fall through the cracks. But when healthcare fails, when it doesn’t see, support, or protect the very people it claims to serve, it doesn’t just disappoint. It puts lives at risk. It alienates patients, strips them of dignity, and forces them to navigate complex systems alone. In those moments, healthcare transforms from a lifeline into a labyrinth: cold, confusing, and often dangerous.
Across the UK, there is a growing population of patients who have been systematically overlooked, left hanging by a healthcare system that is, in many cases, ill-equipped, under-informed, and unwilling to meet their needs. These aren’t fringe cases or outliers. These are everyday people: parents, veterans, teachers, key workers, and vulnerable individuals who have done everything “by the book.” Many of them rely on legally prescribed treatments, particularly cannabis-based medicines, that have been approved for use under UK law. Yet, despite this legality, they are forced to navigate a confusing, inconsistent, and often hostile landscape.
Instead of finding support, they face stigma from clinicians, confusion from public services, bureaucratic red tape at every turn, and an overall lack of accountability from institutions that are supposed to protect them. Whether it’s being denied access to care, criminalised by law enforcement, or priced out of essential medication, these patients are left in limbo, trapped between legality and neglect.
This post is more than a list of failures; it is a call to action. It is a spotlight on the gaps that urgently need to be filled, the protocols that need to be built, and the voices that must finally be heard.
Patients aren’t being supported, why?
Despite the legalisation of certain treatments, most notably cannabis-based medicines, patients continue to fall through the cracks in alarming numbers. On paper, access exists. The law has changed. But in practice, the infrastructure to support that legal change is virtually non-existent. There were no clear protocols put in place for GPs, no nationwide education for hospital staff, no safeguarding policies for vulnerable patients, and no integration into wider healthcare systems like pharmacies or social care services. The system wasn’t ready for this shift, and years later, it still isn’t.
Rather than building a foundation for safe, consistent, and compassionate care, the law was passed in isolation, without the tools, training, or oversight required to make it work on the ground. As a result, patients are left in a confusing limbo: caught between a legal right to access medication and a healthcare system that either doesn’t understand it, refuses to engage with it, or actively discriminates against those who rely on it. What should have been a step forward has become, for many, a door slammed shut.
1. Stigma & lack of standardised protocols
Even with legal recognition, deep-rooted stigma around certain medications, especially cannabis-based ones, remains pervasive across the healthcare system and beyond. For many professionals, the shift in legislation hasn’t been matched by education, guidance, or institutional support. As a result, there are few, if any, clearly defined pathways for how healthcare providers, public services, or even law enforcement should approach these patients.
Doctors may be unsure of their legal responsibilities. Pharmacists may hesitate to dispense certain prescriptions. Police officers may not be trained to distinguish between illicit use and lawful possession. Social workers and safeguarding teams may not know how to advocate for patients using these treatments. The consequence? Patients are frequently met not with understanding or care, but with blank stares, misinformed judgment, suspicion, or even outright hostility. Some are treated like criminals. Others are dismissed or denied services altogether.
This lack of consistency not only undermines patient care but also actively puts people at risk. It reinforces harmful stereotypes, delays treatment, and increases the emotional and financial toll on those simply trying to manage their health with legally prescribed medicine.
2. Everyday systems are failing patients
Accessing legal medication should be the beginning of support, not the end. But for many patients, especially those prescribed cannabis-based treatments, the journey beyond the prescription is filled with systemic barriers, institutional indifference, and social prejudice. These challenges don’t just make life harder; they make it unsafe.
Here’s how the system continues to fail patients at nearly every turn:
Housing discrimination
Patients have reported being denied housing or facing threats of eviction simply because of their prescription. Landlords, housing associations, and care homes often misinterpret legal medical use as drug misuse, citing outdated policies or personal bias. The result? A patient’s health becomes a liability to their housing security.
Driving risks and legal ambiguity
Current roadside drug testing methods don’t distinguish between prescribed use and illicit use, especially for THC-based medications. This means patients can face arrest, prosecution, or loss of their driving license, even when using their medication exactly as prescribed. For many, this leads to fear, isolation, or the loss of employment.
Police confiscations and criminalisation
Patients have had their legally prescribed medications confiscated during traffic stops, home visits, or random searches, and some have even been wrongfully arrested. This not only strips them of vital treatment but forces them into lengthy legal battles to prove their innocence for something that should never have been questioned.
Hospitals rejecting medication use
Shocking as it is, many hospitals do not permit patients to bring or use their prescribed cannabis-based medicines on-site. Whether during surgery, overnight stays, or A&E visits, patients are often told to “leave it at home” or simply go, without forcing them to choose between pain, withdrawal, or secrecy.
Discrimination from other healthcare professionals
Due to outdated attitudes and a lack of clinical education, some medical professionals view patients using cannabis-based treatments with suspicion or disregard. Reports of being dismissed, denied care, or belittled are far too common. This erodes trust in the healthcare system and discourages patients from seeking help when they need it most.
Safeguarding failures for vulnerable populations
In care homes, hospitals, or supported living environments, vulnerable individuals, especially the elderly, disabled, or those under guardianship, can have their medication withheld by carers, nurses, or administrators who misunderstand or disapprove of the treatment. Often, there’s no formal complaint route or oversight, leaving patients with no way to regain access to their essential medicine.
Clinic and pharmacy breakdown
Even within the prescribing system, patients face frequent delays, stock shortages, poor communication, and a lack of continuity of care. For a treatment that often requires daily, uninterrupted use, even small gaps can cause significant harm. Yet, many clinics and pharmacies appear unequipped or unwilling to respond with urgency.
Financial inaccessibility
Perhaps the most pervasive barrier is cost. These treatments are not subsidised by the NHS, meaning patients are often left to pay £200-£500 per month out-of-pocket. For many, that’s simply unsustainable, forcing them to ration doses, skip treatment, or abandon care altogether.
Together, these issues create a perfect storm of neglect, where patients are technically protected by law but left entirely unsupported in practice. The promise of access means little if the system makes it impossible to live safely and securely while using that access.
So where can patients turn?
One of the most devastating aspects of this crisis is that no single authority is willing or able to take ownership. Patients are pushed from one organisation to another, each one pointing the finger elsewhere, claiming it’s not their jurisdiction, not their responsibility, not their problem.
Here’s how the chain of responsibility breaks down:
The Care Quality Commission (CQC), which regulates health and social care in England, does not monitor or hold individual private prescribing clinics accountable for the standard of care they provide. Patients with concerns are often told it’s out of scope.
The General Pharmaceutical Council (GPhC) regulates pharmacists and pharmacies, yet refuses to intervene when patients are denied access, experience poor service, or face discrimination related to their prescriptions.
Clinics and pharmacies, for their part, often blame "supply issues", “policy restrictions”, or “regulatory limitations”, leaving patients in limbo while avoiding responsibility for delays, errors, or poor communication.
Government bodies, those with the actual power to legislate, fund, and enforce systemic change, have yet to implement clear, enforceable guidelines or offer financial support for these treatments, despite knowing the system is failing.
The result? Patients are abandoned in a maze with no exit.
Patients are doing the work the system refuses to do
And so, incredibly and heartbreakingly, patients have had to become their own advocates.
Chronically ill individuals, many dealing with pain, neurological conditions, or mental health struggles, are campaigning for fairness, access, and safety. They are setting up networks, support services, educational resources, and social media campaigns not because they want to, but because they have no other choice.
Let’s pause and really consider that.
We have seriously ill people who should be resting, recovering, or simply living their lives, using what little energy they have to fight for systemic change. They are holding rallies, speaking to MPs, correcting misinformation, organising community support groups, and publishing medical guides, often at the expense of their own health.
This doesn’t just show how broken the system is, it shows the incredible dedication patients must have to protect each other. The strength and solidarity of this community are powerful, but it’s also evidence of institutional failure. No patient should have to get sicker trying to fix the system that was supposed to care for them.
How did we get here?
We didn’t arrive at this point by accident, and we certainly didn’t get here overnight. The current crisis is the predictable consequence of introducing legislation without building the infrastructure needed to support it. It’s the result of a fragmented rollout, a lack of cross-sector coordination, and a failure to centre patients in policy decisions.
Here’s how the system unravelled:
Legalisation without integration
When cannabis-based products for medicinal use (CBPMs) were legalised in the UK in 2018, it was hailed as a historic turning point. And it was, but only on paper. In reality, no meaningful framework was developed to show healthcare professionals, law enforcement, public agencies, or hospitals how to implement or support this change.
No clinical care pathways.
No NHS training programs.
No guidelines for police or safeguarding teams.
No public education campaigns.
What we got was a law without a plan, and patients have been paying the price ever since.
Primary care confusion
One of the most damaging oversights has been the failure to involve GPs in the rollout. Despite being the first point of contact for most patients, many GPs remain uninformed, untrained, and deeply hesitant when it comes to cannabis-based medicines.
Some are concerned about legal liability.
Others say the evidence base is lacking.
Most haven’t received any formal training.
The result? Patients are either referred to expensive private clinics or dismissed entirely, leaving them without continuity of care or the basic medical oversight they deserve. It’s not that GPs are to blame; it’s that they’ve been left in the dark, just like everyone else.
Import madness & pricing barriers
Perhaps the most surreal and unjust part of this entire system is the economic contradiction at its core. The UK is one of the largest producers and exporters of medical cannabis in the world, yet UK patients must import their medications from abroad at extortionate costs. Why? Because there’s no infrastructure in place to distribute or subsidise those same products domestically.
There are no NHS supply chains, no government subsidies, and few licensed UK-based products. This creates a system that is both financially inaccessible and logistically unreliable.
The outcome?
Patients are out of pocket, paying hundreds per month.
Many are locked out of care entirely due to cost or lack of local access.
Increasing numbers are turning to the black market, where there is no clinical oversight, no safety standards, and no accountability.
This isn’t just a policy failure. It’s a public health risk, a socioeconomic injustice, and a betrayal of the very people this legislation was supposed to protect.
This is a public health failure
Let’s be clear: this is not just about inconvenience, red tape, or occasional miscommunication. Patients are being actively harmed by a healthcare system that has turned its back on them. And in some cases, this neglect has been life-altering, or even fatal.
People are losing access to essential medication.
People are being arrested for following their doctor’s advice.
People are being forced to choose between financial survival and their health.
People are suffering silently because the stigma is too heavy, or the barriers are too high.
This isn’t hypothetical. These are real lives, real stories, real consequences.
What began as a legislative promise of medical access has deteriorated into a fragmented and discriminatory system where patients are left to fend for themselves, unsupported and unprotected. We are watching a vulnerable patient population slip through the cracks of a system that pretends they don’t exist.
This is no longer a fringe issue, affecting a small, unseen group. This is a human rights issue. It speaks to the very core of what healthcare is meant to be: universal, compassionate, and inclusive. Healthcare should not be reserved for the fortunate, the wealthy, or those whose needs are easily understood. It must extend to all patients, especially those living with chronic, complex, or stigmatised conditions. To do anything less is to abandon the foundational ethics of medicine and public health.
We need a call to action
This crisis demands more than sympathy; it demands action.
Here's what needs to happen:
Standardised national guidelines: Government must issue clear, enforceable guidance on how patients should be treated across all sectors, from hospitals to housing to police.
Training for healthcare professionals: Mandatory education for GPs, nurses, pharmacists, and hospital staff on prescribing, managing, and respecting cannabis-based treatments.
Protection from legal & social harm: Ensure patients are protected from arrest, discrimination, or housing issues as a result of legal medication use.
Financial support & subsidisation: If it’s medicine, it should be subsidised. Period. The current costs are unsustainable and unethical.
Oversight & accountability: Regulatory bodies like the CQC, GPhC, and NHS England must take responsibility for investigating complaints and supporting patient rights.
Public education: The stigma won’t die unless we kill it, with real stories, facts, and honest discussion in public spaces and the media.
Final words: The system is failing, but it doesn't have to
Patients have done nothing wrong. A quick search online reveals heartbreaking stories of those who choose plant-based medicines, treatments still considered outside the mainstream, only to face judgment, legal challenges, and systemic neglect. These are individuals simply trying to live better, healthier lives, guided by trained medical professionals.
They deserve compassion.
They deserve protection.
And above all, they deserve a healthcare system that works for them, not against them.
It's time to stop leaving patients hanging.
It’s time to listen.
It’s time to act.
Read more from Berta Kaguako
Berta Kaguako, Health and Social Care Consultant
Berta Kaguako is a Health and Social Care Consultant, with an Undergraduate in Psychotherapy and a Master's in Psychoanalysis. Berta’s background is in Mental Health, Substance Misuse and Children & Families: in both a therapeutic and senior management capacity, having won 3x Blooming Strong Awards (Recognition from UN for contribution to violence against Women).
Berta is also the Co-Founder and Managing Director for EthVida, and independently runs the wellbeing service / educational platform.
