Carly Barton had a stroke in her early twenties.

It left her with nerve damage which caused chronic pain, known as fibromyalgia, which she still suffers from today.

The only thing that eases her symptoms is cannabis.

But she can't get it on the NHS, and at £1,400 a month for a private prescription, she has decided to break the law and grow it herself.

More than 200 patients denied medicinal cannabis on the NHS are also joining the "campaign of disobedience" by illegally growing their own.


Here, Carly tells Sky News her story.

Two eminent pain specialists with a combined practice of over 33 years, each made the decision based on a thorough assessment, that my body was benefiting from and thriving with the addition of cannabinoids, and that it was in my best interest to provide me with a prescription for a consistent supply of the strains I knew had helped me.

Image: Cannabis has helped hundreds of patients with several ailments

Following a stroke that interrupted my twenties and threw a hand grenade into my life, I was left with nerve damage that caused off-the-chart neuropathic pain.

If I hit you with a hammer right now, you would feel it because your brain would help to relay that message.

My brain sends those signals all the time.

Image: Carly grows the plants at home

It can feel like burning, stabbing, slicing, tearing, throbbing and occasionally just weird - a good example of the weirdness of my brain is the occasional feeling of a wet knee.

I had tried every pain management drug going, including morphine and fentanyl - which is 50 times stronger than street heroin.

After six years of pharmaceutical pick 'n' mix I was no better - in fact I was worse, and I was off my face on drugs 24/7 and my pain was still sometimes enough to have me screaming the house down.

Image: Carly told police she'd started to grow the drug

No one tells you when they hand you morphine that it can make the pain worse in the long run.

The first day I tried cannabis was the last day I took any morphine, and the first time in six years that I had felt anything close to being completely pain free.

That was four years ago.

Prior to receiving a private prescription for cannabis, I was struggling to maintain the upward momentum of my health due to a lack of consistency in supply of appropriate strains.

Some weeks I would be able to access a strain that would help significantly, but the following fortnight I would be unable to source anything suitable, meaning I was up and down like a yo-yo.

I was often retreating to bed for weeks on end, simply because of access issues.

Image: Carly says the cannabis helps ease her symptoms

The private prescription cost £1,400 per month, which is double the average mortgage in the UK, and is completely unsustainable for the average patient.

My NHS specialist who wrote the first ever prescription for raw medical cannabis in the UK, did so despite her historic scepticism.

She did so because there was no other explanation for my functionality as I walked into her office without a walking aid to show her my vaporiser and explain how I medicate.

When my NHS prescription was blocked at the very final hour, I made the decision there and then, after seeing the progress that consistency of strain provided, that I would never go back to a wheelchair or allow myself to be heavily drugged again.

I had no choice other than to start a small garden, and did so with the exact strains I had been prescribed.

Cannabis is the difference between me having to have a carer to help me dress, and me being able to return to part-time work and contribute to society. It was a no-brainer.

Seeds are readily available online, they are legal to sell and to possess as they are classed as "ornamental" which always makes me laugh, as I think of someone putting them on a shelf to admire.

They only become illegal once you plant them in soil, which I have done.

Initially, I was extremely nervous about what I had chosen to do, especially as I had done it so publicly.

I slept with cannabis capsules by my bed just in case the door came through in the night, as I knew my body wouldn't handle custody without some medication.

Despite my fears, I wanted to be open and honest about what I was having to do, I work for a patient advocacy group; the United Patients Alliance and so I am aware that patients across the country are in a similar - and completely ridiculous - situation.

They fit the criteria for a prescription, but as the NHS is not supporting that yet, the private route is the only way to go.

This means that if you can afford it you can be classed legally as a patient, if you cannot you will be classed as a criminal.

This is not good enough and I am in a position to highlight that and provide a solution.

In order to be open and honest I walked into the police station with a full disclosure about the location of my garden and an invitation to collaborate with me on a project dubbed Carly's Amnesty.

Image: A private prescription costs £1,400 a month

The programme looks to register the location of patient gardens in exchange for immunity from legal action if they comply with a reasonable set of rules.

If a complaint is made and the police make a visit, it's done in a "soft" way, so they can just arrange to bob in for a cuppa and to check that the patient has fewer than nine plants.

If so, the plants would be left in place with no legal action taken.

This is a campaign for patients who live with medical conditions listed in the government scheme outlined in November, but are unable to afford a private prescription.

These patients should have already had access to this medicine, and many more should do also. This is not yet a complete solution for all patients, however we need to formalise a legal exemption while we see that the issues with access are resolved.

Sussex Police is considering my proposal and I am waiting for news about how we can collaborate on a pilot that could be a blueprint for the rest of the country.

I have been extremely lucky in that my friends and family are bad a**!

Carly Barton wants to help others get access to cannabis

Even those with preconceived notions about the plant have had their minds blown by how much it has changed my life.

Without them and the patient community I don't think I would be where I am now, and I don't think I would have enough fight left in me to carry on.

Cannabis has been demonised in this country for many years, it is the reason for a lot of the stigma and the sticking points we have in changing policy right now.

However, when used correctly and appropriately it has the ability to treat over 300 conditions and replace hundreds of addictive pharmaceuticals with debilitating side effects.

The fact of the matter is that even without access to "medical grade" cannabis in the UK, this plant is already changing lives in every city in the country.

What I would like to see in the coming months is the acknowledgement that this is a medicinal plant, that does not warrant any kind of criminalisation.

Where we go from there can only be of benefit to the thousands of patients consuming this medicine as an essential nutrient that is keeping them well.