My Response - UPA

Without Prejudice

23rd June 2019

To all:

THERE HAS BEEN NO DATA BREACH

I was hoping I wouldn’t have to respond but I feel compelled to do so. The circumstances and the facts
are being distorted and misrepresented and there is an awful lot of context missing.
As threats of legal action are being made, I will not be entering into any discussions.

Please note: I have not received a single communication from anyone at UPA about any of this to date.
My point of view has not been sought. No accusation has been made to me directly
(only on Facebook Public Forums and through 3rd parties) and I have been given no right of reply
so I am issuing this public statement.

Please rest assured that there has been no data breach, and nothing has been stolen.
Your data is and always has been completely safe and has never been shared with anyone other
than me.

Why me?

Because I did actually care about your data and had the skills and experience to look after it properly.
There was a complete lack of any data, password or account controls from anyone and since no one
had resolved these issues by the time I was designing, writing, getting academic support for the
2018 Survey, I researched and wrote the GDPR policy for UPA, got it checked over by a lawyer,
published it and implemented it.
At no point has anyone asked me or even expressed an interest in how I have managed this or any
other data at any point. I was left to deal with it alone. Since I also, personally paid for the marketing
and promotion, publicised and monitored the survey, collected the data, analysed the data and
published the final report, it was, of course, also up to me to manage this data, and I have.

Since 2014, I created the 2016 survey which I personally got into the APPG Inquiry and I have run most media inquiries, polls, shop queries, merchandising, CBD affiliates, events and worked with MPs in the name of UPA most of which, through my personal email address, since I could never get a working UPA one!

Over that 5 years up to and including the 2018 Survey and to this day, I have never shared any
personal information with anyone else without advanced permission. In fact, as I am sure that
every patient I have ever dealt will would testify to, even when you have given me your permission
to share your details with someone in the media, I ALWAYS double check that you are happy
before every submission. I treat personal data security very seriously. This behaviour and experience
comes from working as a professional in IT for 15 years.
The reason I still have possession of that data, is that since I resigned from the UPA Board
(not from UPA), an appropriate handover for the data has not taken place, even though I have offered
my time to do this on several occasions so far. I will not hand over any patient data unless it is done
in a secure and responsible way with assurances that it will be managed properly.
I do not currently have this confidence in UPA and since I have been locked out of the shared folder
it was stored in, I can only assume that UPA have a copy which concerns me.

Over that time, I have built a large personal contact list and whilst I did do all this work under the
banner of UPA, everything I do or have ever done is exclusively for the benefit of patients.
I believe I can stand by my public record of dedicating the last 5 years of my life to doing everything
you know that I have done and all absolutely free.
Besides my time and experience, I have invested over £20k of my own funds in doing it under the UPA
banner and I was happy and proud to. But I don’t do what I do for my personal benefit, or for UPAs,
but for patients.
Always have. Always will.

The MailShot

I don’t consider my new organisation to be either a threat nor a competitor to UPA.
I’d hoped and continue to hope that we can complement each other. In fact, with our set-up may well
become a useful source of funding for the great work UPA volunteers have done. I was hoping that
we could help each other succeed in what we wanted to achieve.
Different focuses. One goal. I feel very sad, that it appears to have gone a different way.

Was this wrong?
UPA was set up to be an umbrella organisation to welcome campaigners and activists, and a lobbyist,
to do what they do under a single banner. Not to own, exploit or take advantage of the work of others.

I have designed, instigated, created, increased and managed this data, alone, from the day I started
working as a volunteer for UPA. Literally none of it would even exist if I hadn't and I felt that as I was
still a legal director of UPA, a single communication to all the contacts I had made whilst doing what
I do for UPA and for patients, to let everyone know of something that I am doing to help more patients
would be fair.
The email was an "Opt-In" only, after which I would destroy all historical PII data I held.
I don’t “own” this data. Neither, despite their claims do UPA, patient data belongs to patients.
I believe I have managed that data responsibly.

Is there a chance that I captured email addresses for some reason and at some point in the last 5 years
that I did not cross reference with all the people who ticked “don’t use my email address” in the 2018
survey? I think I did this. Could I have made a mistake? Yes, its possible.

Did I ever make a copy paste error, whilst doing all the analysis of the 2018 Survey Results?
I don't believe so, but accept that it's possible.

Can I cross check to find out? No, because the survey permission said we would delete once the
survey was complete. Once I had completed my analysis of the results data – I deleted them!

So I openly apologise to anyone who was concerned or upset by having received this email from me
(please note, this was from my own personal email address) and am happy to be judged on that decision
and will accept any and all feedback or consequences but most importantly please rest assured that if
you have asked to be removed you have already been deleted, if you have complained to me,
you have been deleted, if you don’t respond affirmatively to the email, you will be deleted and all other
historical data will be deleted in accordance with good data policy as soon as I can hand it over securely
to UPA. Let me know, if you’d rather I didn’t?

I repeat – There has been NO DATA BREACH:
Whilst in my possession, your data has NEVER been shared with anyone, ever!

All this makes me so sad and has gotten so ridiculously out of hand. I’m nobody's enemy and I’m certain
that there are better things for us all to be spending our limited time, health and resources on?
I’ve never stopped supporting UPA. How can I? I have dedicated 5 years of my life to it and have been
instrumental in delivering pretty much everything significant that UPA have achieved in that time.
I’m sorry that the remaining team seem to have lost sight of that.

Making false accusations, jumping to the worst assumptions and even threatening legal action in public
forums without establishing the facts and without a single direct communication, to someone who has
done all this and so much more in good faith and friendship is hurtful and disappointing and this kind
of thing being dealt with in this way is not good for anyone or anything.

I feel I should also add that the lion's share of the UPA website content, all the patient guidance,
medical information and many other assets I have created and/or curated for patients and UPA over the last 5 years I was and continue to be happy for you to use for the benefit of patients.
I also hope you find the forthcoming publications from the Centre for Medicinal Cannabis,
citing UPA (for the work I did for UPA) to be of help.

Yours Faithfully

Jon Liebling

UPA Statement - Billy Caldwell Sunday Times

United Patients Alliance PRESS ANNOUNCEMENT

SUNDAY TIMES BREAKING STORY

Cannabis ban is death sentence for my epileptic son

https://www.thetimes.co.uk/edition/news/cannabis-ban-is-death-sentence-for-my-epileptic-son-bztlmdjc6

Jon Liebling, Political Director states:

"Under what circumstances is it justifiable to prevent access to a proven safe and effective, quality medicine for a sick child which is already tried and tested and legally available in over 40 Countries around the world? 

It's already inexcusable that the Home Office is taking so much time over the licence for poor Alfie Dingley's medicine, but then to actively block the access for another sick child, Billy Caldwell shows a total lack of compassion.

There are an estimated 1.1m regular consumers of cannabis as medicine in the UK today and every one of them deserves the right to access a safe and effective medicine that improves their health and their lives.

Granting access to both Alfie and Billy along with many many more patients in the UK to GMP Certified, pharmaceutical quality, medicinal cannabis products already available around the world only takes the will of the Home Office. No law change is required. There are no valid or reasonable excuses left for delay. For the sake of all those who find cannabis helps their chronic illnesses, we call on our new Home Secretary, Sajid Javid, to address this immediately"

------------------------------------------------------------------------------------------------------

United Patients Alliance Directors and patients can be made available for interviews in London on Monday afternoon/evening and on Tuesday at the Cannabis-Europa Conference at the Barbican Centre. You can call anytime!

Jon Liebling, Political Director, Anxiety and Depression Patient will be in central London on Monday from 12 noon and available all day.

jon@upalliance.org

+44 (0) 7921589237

Others Available with Notice:

Clark French, Founder and MS Patient

clark@upalliance.org

+44 (0) 7773690488

Alex Fraser, Crohn's Patient

Faye Jones, Rheumatoid Arthritis Patient 

Abby Moore, Endometriosis Patient

Keiron Reeves, Epliepsy Patient

ENDS

Introducing United Patients Alliance

The United Patients Alliance are a rapidly growing advocacy, support and campaigning community for medical cannabis patients who suffer from a range of conditions including; Cancer, Multiple Sclerosis, Fibromyalgia, Crohn’s, Anxiety, Depression, AIDS, Rheumatoid Arthritis, ME, PTSD, Epilepsy, Chronic and Neuropathic Pain all of whom have found that various types and strengths of cannabis consumed in a variety of ways has proven to be a more effective medicine than their legal and prescribed alternatives in improving their lives, reducing side effects and treating their symptoms. These patients are forced to either live in unnecessary discomfort and pain or risk dealing with criminals for their medicine and a criminal record for growing it or consuming it.

We launched in June 2014 with the support of Caroline Lucas MP and Professor David Nutt and have since gained the direct support of a number of other politicians, including former drugs minister, Norman Baker. We run Patient Perspective and Cannabis College events around the UK to give patients a forum for telling their stories and to help inform the public of the proven medical benefits whilst dispelling the myths and half-truths about its harms. We estimate that there are about 1m active and current medical cannabis consumers who would immediately benefit from a change. In terms of genuine information on medical cannabis and how best to consume it, we are the UK’s experts on cannabis as a medicine.

Setting up CIO

https://www.lawworks.org.uk/setting-cio

https://www.gov.uk/government/publications/setting-up-a-charity-model-governing-documents


Business Plan

Consitution
Foundation (or Association)

Fill in objects of charity (idea)
13 heads of charity

Activities for public benefit (General or section) https://www.gov.uk/government/publications/charitable-purposes/charitable-purposes

The advancement of education
“To advance the education of the public in general (and particularly amongst scientists) on the subject of particle physics and to promote research for the public benefit in all aspects of that subject and to publish the useful results.”
To advance the education of the public in the subject of [insert subject to be studied].
Advice and Counselling
The relief of the physical and mental sickness of persons in need by reason of addiction to [substance], in particular by the provision of counselling and support.
The promotion of human rights
Raising awareness of human rights issues;
To engage in political activity provided that the trustees are satisfied that the proposed activities will further the purposes of the charity to an extent justified by the resources committed and the activity is not the dominant means by which the charity carried out its objects.”
Relief of sickness

The advancement of health or the saving of lives
The relief of those in need, by reason of youth, age, ill-health, disability, financial hardship or other disadvantage
Any other charitable purposes

Application to Charity Commission
Constitution
Form by each trustee

Application form - long
1: What will the charity do to achieve objectives and work for public benefit
2: Fundraising strategy - how are you finding it
3: Children and vulnerable people

Trustees - not paid
Gavin
Clark
Tim
Mike
Sensi Seeds
Abby
Jon?

Apply to HMRA for gift aid status

It is time to Reschedule Cannabis

The use of cannabis for medicinal purposes is common and the evidence that it is efficacious for several medical conditions is now very strong: Medical Evidence

It is illogical to continue categorising the drug under Schedule 1 of the Misuse of Drugs Act.

Schedule 1 Drugs:

Drugs belonging to this schedule are defined as having no therapeutic value and therefore cannot be lawfully possessed or prescribed. These include LSD, MDMA (ecstasy) and cannabis. Schedule 1 drugs may be used for the purposes of research but a Home Office licence is required.


One of the main impacts of this schedule that is that it makes doing research into the benefits of cannabis all but impossible for most. I saw this for myself whilst working at Cancer Research UK in 2013 to investigate the oncological potential for cannabis: The project had a budget of £150k and would take approximately 2 years to complete. However, once the time and costs to get a license along with the required security needs had been added along with the time it would take to source the exact materials/cannabis required for the project had been added; the project would now take more than 4 years and would cost £315k! So the project was rejected - this has been happening all over the UK and for many years.

In addition, Schedule 1 means that doctors can neither be officially taught about the benefits of cannabis nor discuss consumption with patients other than in order to warn them of the dangers or else risk losing their license to practise. Afterall - since the schedule defines cannabis as having no recognised therapeutic use - why would doctors (or patients) need to know anything about it?

There is a similar impact on government departments as well as registered charities who both risk their licenses if they engage on the subject openly which is why it took so long for and charities to come out publicly in support of cannabis as medicine: A very big "Thank you" to The MS Society for their courage. We hope more will follow....but you can bet they will, the moment cannabis is out of schedule 1!

Watch this great little clip produced by The Beckley Foundation on the inconsistency of our current scheduling of cannabis:

The UK is the world's largest producer and exporter of legal cannabis for medical and scientific use. Yet its drug laws are inconsistent and contradictory, criminalising thousands of patients who use it to treat chronic conditions.

Schedule 2 or Schedule 4?

Release have a really good article that details the differences between the schedules.

Being that the only current approved cannabis medicine, Sativex, is currently in Schedule 4(i), this would seem the most logical and sensible place to put cannabis too, and if it were up to me, or up to most informed opinion, then this is what should happen, but the proposal from Paul Flynn's Elizabeth Brice Bill is proposing only the smallest of changes which would place cannabis into Schedule 2.

Here is the entire text of the Bill:

Rescheduling of cannabis and cannabis resin
The Misuse of Drugs Regulations 2001 are amended as follows.

In paragraph 1(a) of Schedule 1, omit “Cannabis (not being the substance specified in paragraph 5 of Part 1 of Schedule 4) and cannabis resin”.
In paragraph 1 of Schedule 2, after “Bezitramide”, insert “Cannabis (not being the substance specified in paragraph 5 of Part 1 of Schedule 4) and cannabis resin”.

Why not Schedule 4 like Sativex?

In 2012 Schedule 4 was split into 2 parts (i) and (ii) so that certain medicines, such as Sativex and benzodiazapines, could be more strictly controlled without making them so difficult for doctors to prescribe due to all the approvals, documentation and licenses required for Schedule 2 substances. Since this point in time, from a legal and possession standpoint, Schedule 2 and Schedule 4(i) are now the same:

Schedule 4(i) drugs can only be lawfully possessed under prescription. Otherwise, possession is an offence under the 1971 Act.
So in actual fact, Sativex, without a prescription is treated as a schedule 2 substance

Ok - so what about all the approvals, documentation and licenses required for doctors to be able to prescribe - surely this will seriously restrict access and discourage doctors from prescribing?

Well until a few months ago, this would have been true, however, since some of the more powerful opioid derivatives such as Fentanyl and Carfentanyl were added to Schedule 2, it was necessary to make some changes to the way this worked too, or else many thousands of patients in the UK would lose access to their pain relief. So the process for doctors wanting to prescribe a schedule 2 substance was significantly simplified and automated and can now be done with a few clicks of a mouse.

The upshot of all of this is that to all intents and purposes, the only difference between Schedule 2 and Schedule 4(i) is that there is an obligation to record and track prescriptions which, frankly, would be a huge benefit for cannabis, as we really don't currently have all the patient data we need and this will help us gather it.

So whether cannabis is moved to Schedule 2 or Schedule 4(i) makes little or no difference and the only practical difference being data collection, this is a benefit to the future of cannabis as medicine in the UK.

What does this mean for Legal Access to Cannabis Therapeutics

Once cannabis has been moved out of schedule 1, it becomes possible for doctors to be able to legally write prescriptions for cannabis and with a few minor tweaks to a few import regulations (no law change involved) for those prescriptions to be fulfilled at a licensed pharmacy. In terms of what forms of cannabis would be available will depend on future policy in the UK but now that there are so many suppliers/producers of quality cannabis medicines in all forms, such as Flower or bud and cannabis oils, extracts and edibles and from international cannabis pharmaceutical companies like, Bedrocan in the Netherlands, Tikum Olam in Israel, Columbia Care in the US, Tilray in Cananda with more and more coming on board all the time there is certainly little need to fear too limited a range of products, though it might be fair to suggest that in the UK, we may start with just a few and increase the range as time goes by. But, to reiterate, this is speculation at this stage and the question is unlikely to be addressed before or even alongside rescheduling.

How will the effect patients who choose to Grow Their Own Cannabis?
None of this will have any direct impact of those of us who choose to grow and produce our own cannabis medicine. Whether in Schedule 2 or in Schedule 4(i) - the situation is identical to the end consumer or grower - However - there is cause for some hope here too, thanks to the quite unique limitations on how our police force operates in conjunction with the Crown Prosecution Service (CPS)

Imagine, for a moment, that sometime after patients in the UK can legally access and consume a cannabis flower product, by prescription. Then imagine 3 cannabis consumers in a room.

Person 1 is in possession of Bedrocan (cannabis flower) and is consuming that.
Person 2 is in possession of some street weed they just bought and is consuming that.
Person 3 has some they grew themselves and is consuming that.
If those 3 people stay quiet when the police are called to the scene - they are not going to know, who is doing something illegal and who is not, based on sight alone and as such, can no longer make a "safe" arrest. Reasonable suspicion is no longer reasonable!

There are legal teams and QCs looking into this as I write this article, but the likely upshot of this could be that once legal forms of flower have been introduced into the UK, personal possession and even personal GYO could become tacitly and logistically decriminalised. Of course, as above, we will not be able to get a definitive answer on this, until after it has happened and the first "test case" happens.

In any and all eventualities and no matter what sort of future any of us want for cannabis in the UK, absolutely nothing can or will change without moving it from Schedule 1 of the Misuse of Drugs Act, and even the smallest of changes to Schedule 2 has hugely positive implications, which I strongly suggest is the very first domino to fall which will cause, over time, all the rest to fall too.

Jon Liebling

Political Director - United Patients Alliance

UK cannabis market dominated by high-potency ‘skunk’

EMBARGO: 2230 GMT Tuesday 27 February 2018

UK cannabis market dominated by high-potency ‘skunk’

The first comprehensive survey of cannabis strength published in the UK for almost 10 years finds that high-potency varieties made up 94% of police seizures in 2016. The study, co-authored by King’s College London researchers, highlights the potential threat posed to mental health by a market dominated by strong cannabis.

Researchers analysed almost a thousand police seizures of cannabis from London, Kent, Derbyshire, Merseyside and Sussex. The same areas were last sampled in 2005 and 2008.  In 2016, 94% of police seizures were high-potency sinsemilla, also known as ‘skunk’, compared to 85% in 2008 and 51% in 2005.

‘In previous research we have shown that regular users of high-potency cannabis carry the highest risk for psychotic disorders, compared to those who have never used cannabis,’ says senior author Dr Marta Di Forti, MRC Clinician Scientist at King’s College London’s Institute of Psychiatry, Psychology & Neuroscience.

‘The increase of high-potency cannabis on the streets poses a significant hazard to users’ mental health, and reduces their ability to choose more benign types,’ says Dr Di Forti.

The study, published today in the journal Drug Testing and Analysis, found the dominance of sinsemilla was mainly due to a sharp reduction in availability of weaker cannabis resin; from 43% in 2005 and 14% in 2008, to just 6% in 2016 but as low as 1% in the London area.

The average concentration of THC -  the main psychoactive component of cannabis – in resin also increased from 4% to 6%. The average concentration of THC in sinsemilla has remained at 14% between 2005 and 2016.

Historically, cannabis resin has been rich in cannabidiol (CBD), which is almost entirely absent from sinsemilla. Due to its antipsychotic activity, CBD may potentially moderate some of the effects of THC. However, changes in the source of cannabis plants used for resin has led to a drop in CBD content. In 2005 and 2008, the ratio of THC to CBD was 1:1, whereas in 2016 the ratio was 3:1.

A recent King’s College London study found the first evidence for a relationship between increases in cannabis potency and first-time admissions to drug treatment, using data from the Netherlands. The research team are now investigating whether changes to the cannabis market in the UK are having a measurable impact on mental health.

Dr Di Forti, whose research into the mental health impacts of cannabis is funded by the Medical Research Council, says ‘More attention, effort and funding should be given to public education on the different types of street cannabis and their potential hazards. Public education is the most powerful tool to succeed in primary prevention, as the work done on tobacco use has proven.’

NOTES TO EDITORS

Paper reference

‘Potency of Δ9–tetrahydrocannabinol and other cannabinoids in cannabis in England in 2016: Implications for public health and pharmacology’, Potter et al, Drug Testing and Analysis, DOI: 10.1002/dta.2368

Contact

For a copy of the paper, to interview Dr Marta Di Forti or for further media information please contact: Robin Bisson, Senior Press Officer, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, robin.bisson@kcl.ac.uk / +44 20 7848 5377 / +44 7718 697176.

About King’s College London kcl.ac.uk

King's College London is one of the top 25 universities in the world (2017/18 QS World University Rankings) and among the oldest in England. King's has more than 26,500 students (of whom nearly 10,400 are graduate students) from some 150 countries worldwide, and nearly 6,900 staff. The university is in the second phase of a £1 billion redevelopment programme which is transforming its estate.

King's has an outstanding reputation for world-class teaching and cutting-edge research. In the 2014 Research Excellence Framework (REF) King’s was ranked 6th nationally in the ‘power’ ranking, which takes into account both the quality and quantity of research activity, and 7th for quality according to Times Higher Education rankings. Eighty-four per cent of research at King’s was deemed ‘world-leading’ or ‘internationally excellent’ (3* and 4*). The university is in the top seven UK universities for research earnings and has an overall annual income of more than £600 million.

King's has a particularly distinguished reputation in the humanities, law, the sciences (including a wide range of health areas such as psychiatry, medicine, nursing and dentistry) and social sciences including international affairs. It has played a major role in many of the advances that have shaped modern life, such as the discovery of the structure of DNA and research that led to the development of radio, television, mobile phones and radar.

King's College London and Guy's and St Thomas', King's College Hospital and South London and Maudsley NHS Foundation Trusts are part of King's Health Partners. King's Health Partners Academic Health Sciences Centre (AHSC) is a pioneering global collaboration between one of the world's leading research-led universities and three of London's most successful NHS Foundation Trusts, including leading teaching hospitals and comprehensive mental health services. For more information, visit: kingshealthpartners.org.

About the Medical Research Council

The Medical Research Council is at the forefront of scientific discovery to improve human health. Founded in 1913 to tackle tuberculosis, the MRC now invests taxpayers’ money in some of the best medical research in the world across every area of health. Thirty-two MRC-funded researchers have won Nobel prizes in a wide range of disciplines, and MRC scientists have been behind such diverse discoveries as vitamins, the structure of DNA and the link between smoking and cancer, as well as achievements such as pioneering the use of randomised controlled trials, the invention of MRI scanning, and the development of a group of antibodies used in the making of some of the most successful drugs ever developed. Today, MRC-funded scientists tackle some of the greatest health problems facing humanity in the 21st century, from the rising tide of chronic diseases associated with ageing to the threats posed by rapidly mutating micro-organisms. www.mrc.ac.uk

Robin Bisson

Senior Press Officer


Institute of Psychiatry, Psychology & Neuroscience, King's College London 


Tel: +44 20 7848 5377/+44 7718 697176

Em: robin.bisson@kcl.ac.uk

@KingsIoPPN

www.kcl.ac.uk/ioppn 

www.kingshealthpartners.org

PP2 Press Release

MEDIA ADVISORY

Paul Flynn MP’s cross party support builds ahead of second reading of Elizabeth Brice Bill for the legalisation of cannabis for medical use

Supporters include Caroline Lucas MP, Crispin Blunt MP, Frank Field MP & Layla Moran MP

Friday 23 February 2018

3pm GMT

Parliament Square, London

On Friday 23 February 2018, the United Patients Alliance (UPA) will hold a protest in front of the Houses of Parliament in Westminster, as Paul Flynn MP and UPA patron introduce the second reading of the Elizabeth Brice Bill for the legalization of cannabis for medicinal purposes.

The Bill has growing cross party support from MP’s including Caroline Lucas (Green and UPA Patron), Layla Moran (Lib Dem and UPA Patron), Tonia Antoniazzi (Lab and UPA Patron), Frank Field (Lab), Mary Glindon (Lab), Jeff Smith (Lab), Kelvin Hopkins (Lab), Crispin Blunt (Con), Michael Fabricant (Con), Martyn Day (SNP), Ronnie Cowan (SNP), Alastair Carmichael (Lib Dem)

Last year, on 10 October 2017, as Paul Flynn introduced the first reading of the Bill, the UPA held a ‘cannabis tea party’ outside the HoP to stimulate critical debate on the need to allow access to the drug for patients suffering chronic pain conditions. At 3pm this Friday after the second reading of the Bill, Paul Flynn will join the UPA outside the HoP to reveal  the outcome. If the Bill is passed it will proceed to committee stage and into law within just a few weeks or months

Available for interview and photo opportunity | Friday 23 February 2018, 3pm

Who:                    Paul Flynn, Labour MP for Newport West and UPA patron

Jon Liebling, UPA Political Director. Consumes cannabis to relieve symptoms of depression and anxiety

Alex Fraser, UPA Co-Founder. Crohn’s patient who consumes cannabis to relieve his symptoms

Clark French, UPA Co-Founder. Multiple Sclerosis patient who consumes cannabis to relieve his symptoms
Faye Jones, UPA Director. Rheumatoid Arthritis patient who consumes cannabis to relieve her symptoms
Abby Moore, UPA Director. Endometriosis Patient who consumes cannabis to relieve her symptoms

+ patient members of UPA and members of the public

When:                  Friday 23 February 2018, 3pm

Where:                Parliament Square

                              Westminster

London SW1P 3JX

Why:                    Cannabis is currently classified as a Schedule 1 drug meaning it is considered to have a high potential for abuse and no recognizable medical application by the Home Office. It is currently illegal in the UK. This illegal status means those who need the drug to manage chronic pain and other symptoms are denied access to it. Thousands of patients in the UK are being forced to break the law by consuming illegal cannabis or growing their own from seeds. The United Patients Alliance (UPA), a patient advocacy group, believes patients in the UK should not be criminalised for using cannabis, and was founded to challenge the injustice of prosecuting individuals who use cannabis to help alleviate their symptoms.

                              Paul Flynn, Labour MP for Newport West, has long been a voice in the call to amend the law to legalise cannabis for medicinal purposes. Most recently in his speech to the Commons in July 2017 he called directly for civil disobedience, calling on people who use cannabis for medicinal purposes to challenge the law and consume cannabis at Parliament.

                             

United Patients Alliance (UPA)

www.upalliance.org

@UPAllianceuk

Press contacts

Rebecca Ladbury: rebecca@ladburypr.com | +44 (0)7941 224 75

Danya Agababian: danya@ladburypr.com | +44 (0)7779 635147

Notes to Editors

About United Patients Alliance (UPA)

The United Patients Alliance (UPA) was founded to call attention to the injustice of prosecuting individuals for treating their chronic conditions with cannabis. Some of the most vulnerable members of  society face up to fourteen years in prison for consuming a medicine that is legal across North America and Europe. Despite the wide body of clinical evidence supporting its use, the UK Government continues to deny patients a medication with a proven record of safety and efficacy. They need to recognise the well-established medical benefits of cannabis. We believe that no one should be criminalised for trying to be well.  Being sick can be an isolating experience, especially if your medicine is illegal and only available on the black market. The United Patients Alliance is here to support patients through tough times and advocate on their behalf for safe and legal access to cannabis.

About Clark French

By consuming cannabis to treat MS instead of pharmaceuticals Clark saves the NHS over £30,000 a year. Clark was diagnosed with MS in 2010 in the final year of his degree at Reading University. Clark has chronic pain, spasms, fatigue, migraines, tremors and finds it hard to stand up. Cannabis improves all of these symptoms. 

"Cannabis helps me to have a much better quality of life than I get on the medications my doctor can prescribe me. I think it is ridiculous that I can legally take opioids and chemotherapy based treatments which could kill me, but am criminalised for consuming cannabis despite the support of my Neurologist, GP, MS nurse and wider health care team. The UK government needs to act on the evidence which shows that cannabis has medicinal value and change the law immediately".

About Alex Fraser

Alex Fraser, 26, has had Crohn’s disease since he was 19 and uses cannabis to relieve his symptoms. Cannabis stimulates his appetite, reduces his pain dramatically and helps with sleep. It also helps Alex to keep his weight up, and without it he fears he may waste away and become scarily underweight, as many Crohn’s patients do.

“I have tried not consuming cannabis, and my symptoms always increase dramatically, my pain is worsened and I often can’t sleep or eat without severe discomfort. I also have taken prescription meds, and have tried not taking those, and the difference is minimal. I can safely say that cannabis is the most effective treatment for my Crohn’s disease that I’ve tried. I hope that, with the help of the UPA I can have safe, legal access to it as soon as possible”.

About Jon Liebling

Jon Liebling has suffered with varying degrees of stress migraines, back pain, anxiety and depression for most of his adult life, which he has effectively self-managed with cannabis. 

“When left alone by the law, and in every other aspect I have been and am a productive, tax paying, law abiding citizen, father, son and brother who has never done anything to harm anyone, and don't accept why I, or the countless others who benefit, have to suffer more as a result of this uninvited restriction on liberty. From my perspective, the law itself is a crime. Prescription medicine has made me worse. The law has threatened me, hurt me and taken my medicine away. Cannabis has done nothing but help”.

PRESS RELEASE - UPA Northern Ireland Medical Cannabis Summit 2018

PRESS RELEASE - United Patients Alliance – Northern Irish Medical Cannabis Summit


NO EMBARGO

Event: United Patients Alliance – Northern Irish Medical Cannabis Summit

Date: 27th January 2018, 10:00am – 5:00pm

Venue: Riddel Hall, Queens University, Stranmillis Road, Belfast.

Guests: 150+

Major announcements to be made this week;

• GreenLight Medicines agreed to sponsor the event. They are Irelands only cannabis based pharmaceutical firm, have been building an extraction plant and laboratory on the border with Co. Tyrone and Co. Donegal.
• Dr. David Gibson, Northern Irelands only cannabinoid researcher working out of Ulster University will attend and present his recent research conducted right at home.

Conference speaker list to be found below in editorial

Quote from Keynote Speaker: Professor Michael Barnes, MD FRCP, Neuropharmacology,

“The Northern Irish Medical Cannabis Summit is really important to raise awareness of the benefits of medical cannabis and continue our efforts to get this invaluable product legal for thousands of people currently having to live with pain and other real problems in their daily lives.”

Quotes from Patients:

Neil Paine, 46, Coleraine, British Army Veteran 14 years, PTSD and Chronic Pain

“I believe that members of organizations concerned with the care of veterans could gain a much needed insight into this long demonized medicine. The Barnes Report already shows evidence to support the medicinal and therapeutic value of cannabis as treatment for PTSD among other conditions.”

Gareth Tuff, 36, East Belfast, MS Patient using cannabis

(seeking to stand in local council elections next year with the Ulster Unionist Party)

“A governments primary role is to keep its citizens safe. If the medicine is safe and effective and there is general consensus amongst the medical fraternity then there is no question; the law will change. As a Multiple Sclerosis patient I am forced (as there is no other option) to take some very dangerous pharmaceutical infusion medications. The danger is death. Debate not hate, that is what is needed.”

Deborah Hempkin, 55, Newry, Mother of a Chrons Patient using cannabis

“From a mother who was against Cannabis her entire life to watch her son heal within 3 days was hard to believe. I watched my son struggle with Crohns Disease for 14years and I have also watched him heal within 3 days from taking Cannabis. Events like these are of the utmost importance to deliver the truth behind Cannabis and help to educate people.”

Quotes from UPA Directors:

Alex Fraser, UPA Director

“Conferences like this are essential to change the image of cannabis in the mind of the public, to remove the stigma and to educate people about how Cannabis could help them or someone they love"

Jon Liebling, UPA Political Director
"We have been seeing a significant shift around the world over the last few years and indeed in the UK over the last 12 months. UPA Northern Ireland showed at the protest outside Stormont in October that there are things that all political paritnes can agree upon and cannabis as medicine is one. The time is perfect for such a well organised, well attended summit here in Belfast.

Editorial:

United Patients Alliance Northern Ireland are proud to announce the Northern Ireland Medical Cannabis Summit, the regions leading forum for evidence based discussion on cannabis based medicines. To be held in the rather fitting backdrop of Riddel Hall, Queens University.

This conference is a gathering of people at the forefront of cannabis research, policy innovation, legal knowledge and cannabis product and brand development. Ran completely by volunteers, the Northern Irish Medical Cannabis Summit should be in the calendar for anyone planning to engage in the debate in 2018 and beyond.

We will host talks, presentations and panel discussions from;

• Professor Michael Barnes, MD FRCP, Consultant Neurologist and Neuropharmacologist, Author of The Barnes Report, the UK’s leading body of cannabinoid research.
• Baroness Molly Meacher, Chairperson to the All Party Parliamentary Group for Drug Policy Reform, Crossbencher House Of Lords
• Dr. Arno Hazekamp, Cannabis Consultant
• Dr. David Gibson, Cannabinoid Researcher, Ulster University
• Paul North, Treatment and Addiction Policy Advisor at VolteFace
• Kirstie Douse, Release, The UK Centre of Expertise on Drugs and Drugs Law
• PANEL FROM REPUBLIC OF IRELAND; Dr. Garrett McGovern. TD Gino Kenny, Tom Curran and Brian Houlihan
• UPA Directors and Regional Chairpersons

One day to promote change

The first of its kind in Northern Ireland. This conference will be a collection of minds at the

forefront of developing sensible evidence-based cannabis policy, regulated cannabis products, progressive policing and first-hand experience with the effects of cannabis prohibition on the healthcare system, legal system and people.

Intended to redistribute knowledge to those in a position to influence future policy, this event will be the first opportunity to receive this level of education from the front lines of cannabis research and policy innovation. The aim of this conference is to redistribute knowledge to those in a position to influence future drug policy reform.

Not only to provide a forum encouraging discussion in a professional and academic context and develop a qualified response to a serious social and health issues but to facilitate liaison between executive bodies and relevant nongovernmental civic input organisation, provide research and evaluate developing frameworks while adopting and enhancing

current collaborative networks that will help with the advancement of policy and its appropriate use by companies, institutions and individuals in Northern Ireland.

All ages are welcome and disabled access is available, tickets cost £21.50 including booking fee free the EventBrite page

ticketing service at www.eventbrite.co.uk/e/northern-irish-medical-cannabis-summit-2018-tickets-41766613064.

The organisers are delighted to reveal that the event is a SELL OUT 

END

Author contact:

Pearse Donnelly

Regional Co-Chairperson UPA Northern Ireland, NIMCS18 Manager

Suite 3, 100 University Street, Belfast, BT7 1HE

E: upanorthernireland@gmail.com

T: 07927093596

Political Director
Jonathan Liebling
E: jon@liebing.co.uk
M +447921589237