Brave boy and mom walking across the UK to support access to medical cannabis

A young boy and his single mother are in the middle of a 1,000 mile walk through the UK, a trip they take to raise awareness and fundraise to provide medicinal cannabis to chronically ill patients. After leaving their home in Northern Ireland, Charlotte Caldwell and Billy, 15, who suffers from disabilities including intractable epilepsy and autism, crossed by ferry to Britain on an expedition set to take place finish in Parliament in Westminster on June 14.

The Caldwells have three main goals in mind on their journey through the UK. The first is to raise awareness and fundraise for the nonprofit association. I am Billy Foundation provide financial assistance to patients who need help accessing cannabis-based medicines. The march also serves as a call to action for the UK government to support evidence-based studies on the efficacy and safety of cannabis therapies, as well as a public invitation to Matt Hancock, the secretary of British State Health and Social Affairs, meet for a roundtable discussion on the issue.

The boy who changed the law

Billy and Charlotte did international headlines in 2018, when her struggle to get a cannabis medicine for her son, who was experiencing up to 400 seizures a day at the time, led to the legalization of medical cannabis in the UK. seems. Just seven days after starting their adventure, the duo have already surpassed their initial goal of raising £ 5,000 (around $ 7,054) for the foundation, prompting them to aim for £ 15,000 as a lofty goal.

“It’s incredible,” Charlotte Caldwell told me in a virtual interview, adding that they are “humbled by the support the British nation is showing us”.

It is badly needed money. Despite the legalization of medicinal cannabis in the UK, therapies derived from the plant are still not routinely covered by the National Health Service. Instead, patients are required to obtain a private prescription to access their medication, at a cost of up to £ 2,000 per month or more. In an editorial published by the political magazine The HouseConservative Party MP Alberto Costa noted that so far the legalization of medical cannabis in the UK in 2018 has benefited an appallingly low number of NHS patients.

“Almost three years later, what should have been a turning point resulted in very little change for these affected families,” Costa wrote. “It is deeply regrettable that by all accounts only three NHS prescriptions have been issued in our country for the type of medical cannabis that is transforming the lives of affected children. “

Patients left behind

Lack of action has devastating effect on chronically ill patients in UK Last week Rachel Rankmore from Cardiff, Wales revealed she could no longer afford the £ 2,000 a month of cannabis oil for her 19-year-old son Bailey. , who suffers from a rare form of epilepsy known as Lennox Gastaut syndrome. The Rankmores tried dozens of traditional pharmaceutical treatments, but they were either ineffective or caused unacceptable side effects. Cannabis is the only effective drug, but for now Bailey has had to do without it and has “no quality of life.” She implores the NHS to cover the costs.

“It is hell to live with such epilepsy and it is very cruel to withhold funding for this treatment. We can see that it works. We know it works ”, Rachel said WalesOnline Last week. “Without the oil, Bailey really broke down. It is heartbreaking. Bailey doesn’t play anymore, he just sits, doesn’t eat, or engages for more than an hour a day. He went to school on Wednesday but just slept all day there.

Charlotte Caldwell says patients and families across the UK have contacted her for help obtaining medicinal cannabis. She has heard from thousands of sick people who don’t understand why they can’t get a legal, life-changing drug.

“People keep calling and texting me, you know, desperate for access to this wonderful drug,” says Charlotte, adding that patients are the inspiration for the challenge that ‘she and Billy picked up.

Charlotte and Billy’s trip across the UK gives them the opportunity to meet some of these patients in person. After leaving their home in Northern Ireland, they headed for Belfast, where they took the ferry to Liverpool. From there they walked to Birmingham and are currently on their way to Oxford before heading to Southampton. Then, they’ll return to sea for a visit to the British Crown Dependency Island of Jersey and Guernsey, where Charlotte knows about 750 patients who would likely benefit from medicinal cannabis.

“These are vulnerable, chronically ill NHS patients with a wide range of illnesses like MS, chronic pain and epilepsy, which come from some of the most disadvantaged areas of our society,” Caldwell explains. “And the only way for them to access cannabis medical care is by private prescription and they struggle every month to pay for this life-saving drug.”

Research is the key

The NHS ‘reluctance to provide prescriptions for medical cannabis stems in part from its refusal to accept global clinical data on efficacy and safety. As a result, the Caldwells are asking the UK’s National Institute of Health Research to fund national clinical trials on the medicinal use of cannabis.

“Our solution is hard evidence studies conducted at a not-for-profit I Am Billy clinic,” she says, “which will be the first of its kind in the UK to be funded by NIHR. “

Charlotte says people came out to walk with Billy, including a visit from Labor MP Peter Dowd to Liverpool, making crossing the UK an even more rewarding experience. And while she says he doesn’t fully understand the seriousness of their business, the experience is joyous for Billy.

“He feels humbled and privileged to be able to stand up and walk thousands of miles for thousands of chronically ill patients thanks to the fact that he has access to medical cannabis,” Charlotte said.

“And I’m a very proud mom,” she adds.

Charlotte sent a letter to Hancock requesting a meeting with the health secretary when she arrived in London on June 14. She has yet to receive a response, but if her invitation is accepted, she plans to seek prompt and safe medical cannabis support for NHS patients. And she is adamant about the response she expects to receive.

“What I need to hear from Matt Hancock,” she said, “is a three-letter word. ‘Yes.'”

Follow Billy and Charlotte’s 1,000-mile hike through the UK on Twitter or Facebook. Donations to the I Am Billy Foundation can be made online.

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