The mother of a child with severe epilepsy has urged medical cannabis makers to ease the financial burden on troubled families.
Charlotte Caldwell said dozens of families with severe epilepsy have to pay privately for a prescription at a time when the cost of living is rising.
Mrs Caldwell and her son Billy, who are from Castlederg, Co Tyrone, played a key role in a campaign to get a change in the law in 2018 that would allow certain patients to access treatment across the NHS.
However, he told the PA news agency that despite this progress, it has been a difficult path for families like his.
He was speaking on the fourth anniversary of the confiscation of his son’s medical cannabis at Heathrow Airport after returning from medical treatment in Canada. They had traveled there after their GP could no longer prescribe the medicine.
He was later returned after falling ill and was being treated at Chelsea and Westminster Hospital in London, where his NHS doctor informed the Home Office that Billy’s condition had been life-threatening.
Interior Secretary Sajid Javid then authorized the return of the medical cannabis and in November of that year changed the law to allow it to be prescribed by specialist doctors for certain conditions.
Ms. Caldwell described the process of obtaining a prescription for medical cannabis funded by the health service as cumbersome and said many families have had to turn to private health care to get it or risk it on the black market. .
He said there are 1,486 NHS-funded medical cannabis prescriptions in the UK four years after legalization.
But he said it is estimated that up to 60 patients with pediatric epilepsy cannot get NHS-funded medical cannabis and some are said to pay up to £ 2,000 a month to access it through private healthcare.
Some 1.4 million people use black market cannabis to treat a disease.
Ms Caldwell offers her experience in advising families and has made a number of requests to the government and medical cannabis manufacturers to facilitate the process.
He said there is a framework, but it is only available to children under the age of 18, leaving behind “forgotten children” who need full-time care.
“The Refractory Epilepsy Clinical Counseling Service (RESCAS) was established in 2020 to support pediatric neurologists in considering medical cannabis (and other new treatments) in cases of intractable epilepsy; his impartial recommendations are passed on to the patient’s doctor, and it was through this that Billy regained NHS funding in October 2020, “he said, calling for it to be extended to all ages.
Caldwell is also asking medical cannabis manufacturers to give away their medications to patients with pediatric epilepsy while they are going through the RESCAS process.
She told PA: “While I am delighted that there is now a path to affordable and reliable medical cannabis treatment in the UK, it hurts me that it remains a complex and sometimes opaque process.
“Four years after Billy’s medicine was confiscated at Heathrow Airport, I want to share the lessons of my experience with other families, for whom the journey does not have to be so fraught with complications, pains and large personal expenses.
“I also call on medical cannabis manufacturers, who do so well with private prescriptions, to put their medicines where they have their mouths giving away medical cannabis to patients seeking NHS funding.
“This would immediately alleviate the huge financial burden that patients and their families face, during which time I hope to help them navigate the complicated approval process.”