Ep005 – United Patients Alliance Interview – Clark French & Leila Simpson

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In episode 5 we meet Clark French and Leila Simpson from the United Patients Alliance to discover more about their work and why most patients are still not getting cannabis prescriptions on the NHS.

Clark French: The United Patients Alliance was founded in 2014 with the help of Caroline Lucas and professor David Nutt. We campaign to raise awareness of the benefits of medical cannabis in both the public and political fields.

We also support patients who currently consume cannabis as ‘medicine’ and find that they have trouble with the law and have trouble with the stigma. So we’re a support group and an advocacy group.

Leila Simpson: We aim to represent over a million patients in the UK who are currently self-medicating with cannabis. We want medical cannabis in the hands of every patient who needs it – no matter what condition they present, no matter how much money they have got.

Q: If doctors can technically now prescribe cannabis, why are they not doing so?

Clark French: Last year the government rescheduled cannabis medicines into schedule 2 – so it has medicinal benefits, but there wasn’t a process in which patients could access it.

“Although a lot of doctors and specialists do want to prescribe their patients cannabis, there’s no funding. All the clinical commissioning groups (CCG) the bodies that decide which funds are set for different NHS bodies are saying they can’t afford cannabis.”

Clark French – United Patients Alliance
Group photo of the united patients alliance

Although specialists will say ‘Hey I have a patient that is presenting a problem that could be helped by this this product’ they won’t have any ability to prescribe it to them on the NHS, because it won’t be funded by the CCG’s.

However, a private prescription can be funded. If a patient gets a private consultation and fund the medicine themselves – they can access cannabis legally from the Dutch governments license – Bedrocan.

Leila Simpson: We’re in a situation where if patients can pay, they can access medical cannabis. But if they can’t pay – the NHS won’t provide it for them.

Q: What form are they normally describing the cannabis is it as oil or is it a supplement?

Clark French: It’s as a flower. Bedrocan has around 7 different strains the flagship one is a 22% THC dominant strain. Its THC.

Q: Could patients grow their own medicine at home and save the National Health Service (NHS) money?

Clark French: Growing your own cannabis in the UK is still a criminal offence. You can buy and sell cannabis seeds as much as you like but if you start to cultivate it, that’s a crime. That’s the situation we’re currently in.

People do you want to be able to grow their own and a lot of patients are growing their own currently – but they can face problems with landlords, problems with neighbors, all sorts of different issues that stem from it. There’s no protection for people that are having to do that.

“Where the NHS is not prescribing cannabis, the only way that people are able to access it right now is either: Growing their own cannabis or going to the black market.”

Clark French – United Patients Alliance

That’s it, there’s no other routes to access it. It puts patients in a strange and horrible predicament of: Do I carry on suffering or do I take matters into my own hands to grow my own?

Q: Where do things currently stand in the UK when it comes to the law?

Even if a person has a private prescription for medical cannabis if they choose to grow their own, they can still get problems with the law and potentially prosecuted.

Leila Simpson: At United Patients Alliance we are running a campaign called #letusgrow where we think that it is safer for patients to grow their own cannabis to find out what strains best most affect their conditions.

By growing their own, they do not need to engage with the black market. Which are the only two choices that most patients have.

The cost for medicinal cannabis in the UK is around £600 for 28 grams – which is approx. triple the street price.

It’s not just the funding that’s holding us up as we try to progress towards medical cannabis for patients. There’s also a lot of hesitance from the NHS and the advisory bodies as they say there’s not enough clinical evidence.

NICE recently published guidelines that said that there was not enough clinical evidence to say Cannabis was effective.

We speak to patients regularly across the UK here who are all consuming cannabis who have transformative life experiences through consuming medicinal cannabis. In other countries they have recognized it as therapeutic.

Clark French: There’s no reason really that’s good enough to say that UK patients can’t access it when patients in other areas of the world can.

We know that cannabis doesn’t fit neatly into clinical trial box, because it would take centuries for us to do enough clinical trials to appease NICE.

To try and appease them we need a new paradigm shift, we need to approach this issue differently and for them to recognize that the case of cannabis is a bit different.

We need to develop a new way of producing the evidence. At the United Patients Alliance, we’re trying to work with the authorities to produce evidence that they can hold up and say ‘OK, this will do’…so we can connect our patients with their medicine.

We estimate there are a million patients in the UK who are currently self-medicating with cannabis.  We want medical cannabis in the hands of every patient who needs it.

Q: So as things stand, cannabis is too expensive for the NHS to prescribe and there is a lack of evidence from clinical trials?

Leila Simpson: I’d add another challenge, which is the stigma around cannabis. This prevents people from engaging in it. We are starting to see some change in our society, where people in their 60s and 70s who encounter illnesses or perhaps their friends do – and they are beginning to think – maybe cannabis can help?

We are starting to see a small shift towards cannabis being a bit more socially acceptable. But we have a long way to go because we’re fighting 50 years of prohibition and misinformation propaganda.

We need to do quite a lot of work to inform and educate the public about cannabis being a medicine rather than a dangerous evil drug that will ruin society.

Clark French: The problem with body of evidence is something we have started to tackle at the UPA. We’ve partnered with Drug Science and professor David Nutt to produce project 2021 we aim to get 20,000 patients into clinical trials by the end of 2021.

We think that this will provide the body of evidence which could be used by NICE and used by the government, and by the CCGs to show that there is real value in prescribing cannabis to people which could save money for the NHS.

I have MS and the 11 prescription medications given for my condition cost around £30,000 every year (if I took them). But I don’t. I take cannabis instead. Its coming up to 10 years now.

“My traditional medicines would have cost the NHS £300k. The cannabis I have consumed certainly hasn’t cost £300k, so there’s definitely vast savings to be had, if used correctly.”

Clark French – United Patients Alliance
Clark French on Sky News where he discusses how cannabis has helped his MS condition.

If it can be positioned as a first port of treatment rather than a second, we believe that cannabis can be much safer than many drugs currently prescribed to people. For example, I’m prescribed tramadol and if I take too much tramadol it can kill me. They’ll happily give me a pain killer that could kill me each day, but they won’t prescribe us cannabis. Its upside down.

It’s a long process really. We are on our way, it is happening but its slow and arduous.  Some patients aren’t going to get medicinal cannabis when they want it, and we’re going to lose people along the way.

We may have young children who are going to not be with us who could be with us if the powers that be would move quicker. Unfortunately, that is something we must accept in this campaign.

“Several founding UPA members are not here with us anymore and if they had access to cannabis fully in the way that they wanted it – their fate may have been different.”

Clark French – United Patients Alliance

Its a horrible war to be fighting but that’s just what it is, it is a war and we need everybody to support patient advocacy. Because we are on the frontline. Patient advocates are the frontline of this war and we are already sick and dealing with our own illnesses.

We really need people to get behind patient advocacy and understand that we are doing this now to get our medicine so that we can lead better lives. Then everybody has that same option if they get ill. Medical cannabis does not discriminate it is for everybody.

Leila Simpson: Cannabis is not just about pain relief. It can help with depression, anxiety, pain but lots of mental health conditions too.

The CBD market in the UK has really taken off, its booming. But CBD is just one small extract of over 100 cannabinoids in the plant.  There’s a bit of misinformation out there that CBD is the medical part of cannabis which is not true at all, it’s the whole plant. The whole plant is the most medically effective thing so have all the terpenes.

It’s good that CBD is becoming more mainstream because that is a step towards becoming more acceptance of cannabis the plant in general.

But it’s not far enough.

CBD isn’t effective for a lot of our patients they need THC like Clark here, so we have a long way to go to make the whole plant available to everyone.

Leila Simpson – United Patients Alliance

What do you see happening in the UK in the next 3-5 years?

Clark French: We’re going to see more patients going private for cannabis prescriptions.

The recent NICE guidelines which came out may not have helped. Some companies that might have invested, are possibly more hesitant than they were before.

My biggest concern in the next 5 years is make sure we have well-funded patient advocacy groups that can really push the message home that cannabis is medicine.

I think what is about to happen is that as big industry moves in, it’s going to be the full recreational industry getting behind it rather than the medicinal. In that respect I think the UK is trying to run before it can walk.

I don’t think anybody should be criminalized for consuming cannabis I think that we need to do this in a proper order and make sure we get the patients off the battlefield first.

“As we’re saying this is a war on drugs and you don’t leave the sick and wounded to die on the battlefield. You make sure you get them back home first and make sure they’re safe. Then you carry on. That is how wars are fought.”

I think this is going to be the biggest downfall if we don’t get that right we’re not going to get what we want moving forward.

It potentially could hold up the entire thing. If medicines are not in the hands of patients in the next 5 years thing is going to be harder for the recreational campaign to argue that they should have recreational cannabis in the hands of everybody.

“Ultimately if we want to see changes, we need to ensure that sick people are looked after.”

Leila Simpson: I think that within the next 5 years we are going to see availability of medical cannabis for a variety of different patients. Maybe not for all the conditions that we’d like to see, but I think we will be in a position where it’s more widely available for patients.

I agree with Clark. The risk is that patients themselves get left behind and its not what the patients want and need that is being provided.

Look at the global trends. We are heading towards a situation where cannabis is going to be made more widely available, either just medically or recreationally as well. I think that’s a global trend.

“The fear is that patients aren’t going to be heard and patient advocacy grapes like ours could be ignored and defunded. Then we’re left with profiteers trying to ring the industry dry whilst patients are still suffering on the sidelines.”

Leila Simpson – United Patients Alliance

The United Patients Alliance is seeking funding. If anyone would like to help us, we are desperate for funds. We want to ensure that the patient voices are part of this whole community.

Resources:

Website: https://www.upalliance.org/

Twitter: UPAllianceuk

Facebook: unitedpatientsalliance

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