United Patients Alliance

by Leila Simpson in Brighton, England, United Kingdom

£1,370

raised of £60,000 target
30
supporters
2% 19 days left
Flexible funding – this project will receive all pledges made by September 6th 2019 at 9:00am

We aim to safeguard medical cannabis patients and make medical cannabis appropriately available to all patients from all backgrounds.

by Leila Simpson in Brighton, England, United Kingdom

Cannabis is medicine. With an increasing weight of evidence to support this, other countries have legalised and regulated access. By rescheduling to Schedule 2 (reclassifying it) in October 2018, the UK parliament has officially recognised that cannabis has medical value, however vast challenges lie ahead in terms of getting this medicine into the hands of the estimated >1 million patients who could benefit from it.

Every penny raised will go towards our projects, development, and advocacy efforts.

Who are we?

After Clark French was diagnosed with Multiple Sclerosis in 2010, he discovered through trial and error that he could transition off of the prescribed pharmaceuticals that were known to be damaging his liver and manage his symptoms better by consuming cannabis alone. He founded the United Patients Alliance in 2014 with one aim in mind-- ensuring all patients who could benefit from medical cannabis could appropriately access it. 

The UK’s first medical cannabis support group, led by patients, for patients; United Patients Alliance provide tireless advocacy, compassionate campaigning, and essential education, to safeguard the patients’ voice in advancing legal access to cannabis therapeutics.

Operating on a tiny budget, and led by a team of volunteer patients, we've been instrumental in lobbying the government to reschedule cannabis to allow it to be prescribed, and have gained support from high-profile individuals such as Professor David Nutt, former government drugs minister Norman Baker and Caroline Lucas MP. The UK cannabis industry is now growing at a rapid pace. Your support is needed to ensure that UPA continue to safeguard patient rights in the unsettled environment of the medical cannabis industry.

Representing an estimated >1 million UK medical cannabis patients, we engage with politicians, medical professionals, academic researchers, legal experts, the police, the media, charities and the general public. Our projects are aimed at educating different audiences, campaigning for changes to the way cannabis is handled legally and advocating for patient rights. Fighting the historical stigma around medical cannabis, we assist and guide our community of patients, carers and supporters.

You likely know someone who consumes medical cannabis-- 1 in 70 people in the UK do. Many feel uncomfortable talking about it. Help them by helping us advocate for them.


What do we need?

We need to complete our plans to become a charity and secure the future of the UPA by leading and participating in projects designed to safeguard patient rights.

£60,000 would enable us to fund employed positions for six months, meaning that we are not relying solely on the goodwill and availability of our wonderful volunteer team. Having a small staff team which will include a Head of Operations, a Head of Outreach, a Head of Finance and HR Manager positions would enable us to tackle the challenges we face, through leading on the projects below. In 6 months time, we could be giving more comprehensive support package to our patients and moving the UK towards better access to medical cannabis through the projects below, thanks to you. Please read on!

Challenges we want to tackle

#nopatientleftbehind

Cannabis is only available to those who can afford it.

Cannabis-based medicines are predominantly only available to those who can afford a private prescription-- as far as we know, there have been no NHS medical cannabis prescriptions since the law changed on 1 November 2018, yet there are estimated to be over 1 million patients who self-medicate with cannabis. UPA patients have disclosed that they are not able to pay the high price that comes with private healthcare-- far higher than the black market-- and so many have resumed self-medicating despite having received a prescription.

Buying cannabis from the black market is dangerous, as there is no quality control, and no guarantee of safety, meaning patients put themselves at risk to access their medicine.

The UPA is committed to working with charities and healthcare professionals to address the obstacles the NHS faces in prescribing cannabis medicines.

Cannabis is only available for a very limited range of conditions.

Currently, cannabis is only available on private prescription for MS, epilepsy and chemotherapy-related nausea. NICE, who handle recommendations for the release of new medicines in the UK have published draft guidelines on 8th August 2019 that suggest there is a lack of clinical evidence to support the prescription of medical cannabis.

The UPA hears tens of thousands of testimonials from patients in the UK who are medicating for a range of physical and mental health conditions. From arthritis to tinnitus, from depression to Tourettes', cannabis is helping to improve the quality of life of all kinds of people. We are directly addressing this gap between clinical and anecdotal evidence by partnering with Drug Science to pioneer a study of 20,000 patients and their consumption of medical cannabis over the next two years.

The UPA advocates for all patients who consume cannabis for a variety of health conditions. We will not stop campaigning until cannabis is available to every patient, whatever condition they present.

The focus of the UK cannabis industry is on profits, not patients.

There is a worrying move away from being patient-focused as the UK cannabis industry starts booming. UPA leaders have researched models used in countries where medical cannabis has been made available to patients. Too often we hear stories of the dire patient need being left behind as businesses seek profit from the sector, and we hear from our overseas counterparts their struggle to advocate for the patients at the heart of this issue.

The UPA want to continue to safeguard the patient voice and ensure that the UK cannabis industry is working for patients, not just for profit.

Projects

To address the challenges above, and achieve our aims of supporting our patient community, we asked our patients what they would like us to focus on and we agreed to:

  • Professionalise our organisation, including developing safeguarding policies and procedures, protecting our sensitive data, becoming a charity to gain tax relief and Gift Aid, and developing our long-term funding strategy
  • Enhance our outreach to other advocacy groups and charities including building on the great work we have already done with the MS Society and our current work with EDS UK, establishing a Medical Cannabis Advocacy Council, connecting patients with cannabis as a medicine and partnering with organisations on projects such as TWENTY21
  • Improve our communications, including filming a myth-busting documentary series, establishing a UPA podcast channel and vlogs, and sending a regular newsletter to our members and supporters
  • Grow our profile in the media by taking every opportunity to put our Patient Representatives in the spotlight, sharing their stories of how cannabis has helped them
  • Invest in the movement by developing a Cannabis Campaign College, gathering data on cannabis consumption in the UK through our annual survey, running events for our members and supporters, and establishing a National Medical Cannabis Day.

UPA Testimonials

"United Patients Alliance are a trusted and powerful voice for patients in the campaign for evidence based policy making in relation to medical cannabis." Caroline Lucas MP

“I have joined United Patients Alliance mainly because one of my best friends has Multiple Sclerosis and I have seen first hand how cannabis helps him. He joined this wonderful organisation looking out for and fighting for patients like my friend and I am delighted to give them my support” Tonia Antoniazzi MP

"I have gladly accepted the offer to become patron of the UPA. They are a well organised and sensible group. I am very clear from my time as drugs minister in the coalition government that for some people, access to cannabis is essential for their health and it is disgraceful that not only are they denied access to vital medicine but prosecuted if they access it themselves. The UPA makes a strong case for a more humane approach and I am delighted to do what I can to support them." Norman Baker, former UK government Drugs Minister

"United Patients Alliance is very active across the UK" Lloyd Russell-Moyle MP as part of the Medical Cannabis Under Prescription debate in the House of Commons, May 2019

Patient Testimonials

Lucy Stafford

"My name is Lucy and I am a medicinal cannabis patient with Ehlers Danlos Syndrome. After being discharged from hospital with a dislocated jaw and no options of further surgeries, treatments or medications, I desperately tried medicating with street cannabis. It completely changed my life and my health, even allowing me to regain the ability to eat and drink after three years on a feeding tube. I am passionate about helping other patients access this medicine and working towards a healthcare system that integrates the use of medicinal cannabis in the UK."

Chandler Wilson

"Hiya, I am Chandler and I use cannabis to treat My Borderline Personality Disorder, Tourette Syndrome and Chronic pain amongst other things.

 I was put on high adult doses of anti-psychotics and other medicines where the side effects were believed to help TS, though not specifically licenced for Tourette’s. These included clonidine, aripiprazole, haloperidol and risperidone. The side effects that came with these Pharmaceuticals effected me very negatively, including heavy weight gain, and a feeling of 'Zombification' often leaving me unable to function other than for basic necessities such as eating.

One of my new friends mentioned about cannabis. I remembered hearing about its medicinal uses from other young people in the Mildred Creek Unit. I tried it and for once my Tourette’s was not bothering me, I felt ok eating. I was not thinking about suicide and I was able to be more myself.

Cannabis is giving me the ability to keep fighting my mental illnesses and keeping me going and I will never be ashamed to say that."

Susan

"When I consume cannabis I can sleep, it has greatly helped me with the cramps of menopause. If cannabis can help me, it can help thousands of others."

Clark French

“Cannabis has drastically improved my quality of life, I have replaced all pharmaceuticals with cannabis and save the NHS £30,000 every year. I know that cannabis is medicine as I feel it reduce my pain, increase my ability to walk and mean I do not suffer from chronic bladder weakness. That patients are criminalised for cannabis is callous, cruel and must change.”

For more testimonials on the transformative effects of cannabis on patient lives, please visit our website.

We rely on donations from people passionate about our aims. Please share this Crowdfunder with your friends and family to help us advocate for all patients.

Thank you,

The UPA Team

www.upalliance.org

facebook.com/unitedpatientsalliance/

Rewards

This project offers rewards in return for your donation.

£25 or more

Patient advocacy digital card

A personalised specially-designed digital card thanking you for your contribution to the future of patient advocacy in the UK.

£50 or more

1 of 1 claimed

Classic purple t-shirt

A classic purple UPA logo t-shirt. Wear with pride!


Let's make 'United Patients Alliance' happen

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