“As a black medical cannabis patient, unfairness hurts terribly.”

Lucy Stafford, advocacy director at PLEA (Patient-Led Engagement for Access), says patients with disabilities are still suffering almost three years after the rescheduling of medical cannabis.

In November 2018, the current Minister of Health (and Home Secretary) Sajid Javid decided to make medical cannabis legally available to patients with chronic illnesses.

At that time, he claimed that the government “now fulfilled our promise.”

Today, the UK is one of the world’s leading producers of medical cannabis products, but the overwhelming majority of eligible UK patients do not have access to legitimate NHS prescriptions that can significantly improve quality of life.

Instead, people who suffer from chronic pain, Tourette’s disorder, and other symptoms are at risk of serious debt or even arrest when seeking treatment. Some patients report that they must sell all their property and even homes to fund their personal prescriptions.

Lucy Stafford

New report published in British Medical Journal (BMJ) Identify barriers to access for patients with Ehlers-Danlos syndrome and solutions to overcome the deadlock in patients with various conditions.

Javid returned as Minister of Health earlier this year. Patients and patient groups are now demanding that he review his decisions regarding medical cannabis, address all disorders promptly, and provide meaningful access to those in need.

Patients with disabilities across the UK say that Health Minister Sajid Javid will fully fulfill the government’s 2018 commitment to give patients with chronic and life-threatening conditions access to legal medical cannabis. Requesting. Later, the November 2018 decision of the Interior Minister, Javid, allowed the legal prescription of the drug.And in the last three years, Britain Appeared As the largest producer of medical cannabis so identified in a study conducted by the United Nations.

However, for the vast majority of patients with chronic and life-threatening conditions, there is little change. Many barriers to NHS access remain. And in fact, since the drug was made, only three patients have had access to “full-spectrum” (or “full-plant”) medical cannabis via the NHS. legal.

Kayleigh Ross, a member of the PLEA Patient Working Group, said: In 2021, this important remedy remains inaccessible to hundreds, if not thousands, of life-changing people, but instead is great when trying to buy a personal prescription. I am facing a problem. I’m waiting enough. We need not only words but also things to change. “

The BMJ report identifies access barriers and solutions

September 9, 2021, BMJ Release Clinical practice guidance for providing non-inhaled medical cannabis to patients with moderate to chronic pain, including people with neuropathic and cancer-related pain.

This is the next Publication In July of a new case report by the BMJ, he highlighted the remaining barriers for patients with chronic and life-threatening disabilities. This includes a lack of physician knowledge about the use of medical cannabis, education on the use of medical cannabis, restrictive guidelines, and cost and supply issues. ..

Especially relevant Ehlers-Danlos Syndrome – Hereditary diseases affecting body tissues – The report identifies ways to break patient deadlocks with solutions, including increased drug production in the UK and mass imports of medical cannabis from around the world. ..

As highlighted in the BMJ case report, the lack of NHS access means that UK patients using legal medical cannabis often have to pay for expensive private prescriptions. .. And those who can do this will often have to borrow from friends and family, sell their property, and incur long-term debt to fund their treatment.

La Love Room, President and CEO Ehlers-Danlos Association “We hope that this report will support the clinical expertise of this treatment option and expand research into this area. Patients will not rely on illegal access channels if they cannot afford private health care. It is unacceptable not to get. Patients need NHS access to treatments, including cannabis-based medications, as needed. “

Patients are receiving life-changing treatment, how much does it cost?

Jim Finch And his wife has to sell her family’s home to pay a continuous prescription that costs thousands of pounds or more for just 10 days of treatment.

Jim Finch

Jim Finch developed Tourette’s after a serious car accident

The 2018 car accident, which was not his own fault, resulted in serious injuries and trauma, leaving Jim with complex neurological conditions such as Tourette’s syndrome, fibromyalgia, and functional neuropathy. From a healthy 29-year-old dad, he couldn’t walk or communicate and suffered dozens of seizures and seizures a day.

Jim was prescribed “Hundreds of tablets” He left “vegetables” (in his own words) to manage symptoms such as tramadol, morphine, diazepam, codeine, amitriptyline, lorazepam, and sertraline. Currently, he uses a privately prescribed medical cannabis arc to help control his pain, tics, and seizures.

Jim said: Previously, that would simply not have been possible. I have been closer to myself long before the crash. There is a fraud in which people are put in jail in an attempt to get their help.

“There is also the injustice that people have to pay a lot of money for private prescriptions. My partner and I sell both cars, spend all our savings and thousands from family members in the last two years We now have to sell my home and move with my children-in-law so that we can continue this life-changing treatment. And that’s all. To allow me to exist as a father. “

Building a UK evidence base

In November 2019, the UK science charity Drug Science launched Project 22. This is an observational study of 1,500 patients to date, aimed at creating the greatest evidence of the effectiveness of medical cannabis in the United Kingdom.

The study covers a variety of key conditions, including anxiety and chronic pain, with the ultimate goal of providing sufficient evidence to provide better patient access to medical cannabis on the NHS. is. With the help of financial support from industry producers, Project Twenty21 Offering medical cannabis products to patients at caps while collecting patient data to inform the UK evidence base with the aim of influencing the NICE guidelines.

After spending my decade in severe pain and relying on opiates and feeding tubes, my quality of life has been “changed” by medical cannabis.

Now 21 years old, I’m one of the few patients in the UK who has legal access to medical cannabis. I do this through Project Twenty 21. It offers a £ 450 / month subsidized personal prescription that previously paid £ 1,450 per month.

Three years ago, my life was intolerable pain from dislocation of joints with minimal movement. I couldn’t get out of bed safely, so I needed help from a full-time caregiver. To relieve the pain, I injected a myriad of incredibly powerful opioid drugs. They never worked, and as I got weaker, the painkillers got stronger. I felt like a shell and had no hope or thought of how I could stay alive in that state – it’s a constant and intense pain to you.

Three years ago, Sajid Javid saw the suffering of people with disabilities and the potential benefits of medical cannabis. Thankfully, he changed the law to allow legal prescriptions. My doctor and I were thrilled. This was my last hope for a life-changing treatment. After that, he was introduced to palliative care. But when my doctor wrote me such a prescription, it was denied funding and I was told that I had no access to NHS treatment. I was devastated.

So, like millions of other ill people, I had no choice but to break the law to find help. I was scammed, sent contaminated cannabis, vulnerable during drug trafficking, and afraid to be caught. This was one of the lowest points in my life.

Today, I was fortunate enough to get a legal prescription from my family, so my health is better and more stable than ever. I can now walk, sit, live independently, concentrate, study to some extent, and live a generally normal life away from hospitals and endless medical interventions. .. However, even with the large grants I received as a patient with Project Twenty 21, it is unsustainable to fund life-saving medicine as a student with a disability with a very limited income. And I’m alive for fear of losing access and getting sick again.

The current situation does not help anyone. Established drugs like the one I’ve been given can be very costly to the NHS and can have terrible side effects. The mental health burden of chronic illnesses that are not effectively treated, like me, can make patients feel suicide. And because private prescriptions are expensive, people can be forced to choose whether they can’t afford them, are painful or can eat them.

It is savage and was created by the NHS to prevent it.

For more information, please visit: PLEA (Patient-led involvement for access)

“As a black medical cannabis patient, unfairness hurts terribly.”

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