Health Secretary Sajid Javid is being urged to “deliver on his commitment” to ensure children with severe epilepsy can access medicinal cannabis after campaigners claim families are paying thousands for the treatment.
Campaign group, End Our Pain, said families have been left out of pocket after paying for private medicinal cannabis prescriptions – despite a law change three years ago allowing certain patients to access it through the NHS.
The amendment came about after several high-profile cases, including those of young epilepsy sufferers Alfie Dingley and Billy Caldwell, whose conditions appeared to be helped by cannabis oil.
In 2018, Mr Javid, who was home secretary at the time, announced that doctors were able to prescribe medicinal cannabis products, including for severe epilepsy.
However, campaigners say that since then only three NHS prescriptions for the treatment used by Alfie have been issued.
Alfie’s mother, Hannah Deacon, said: “I am immensely grateful for the help Mr Javid gave my family.
“He helped save my son and transformed our family life.
“But others remain blocked from NHS access to this vital medicine and are at emotional and financial breaking point.
“So on the third anniversary of the law change that offered so much hope to other families with children affected by severe epilepsy, I’m urging him to follow through on his commitment ‘to do all he can in this area’ and help these other families.
According to the NHS England website, very few people are likely to get a prescription for medical cannabis.
It states that it is “only likely to be prescribed” for children and adults with rare, severe forms of epilepsy, adults with vomiting or nausea caused by chemotherapy, and people with muscle stiffness and spasms caused by multiple sclerosis.
It would only be considered when other treatments were not suitable or had not helped.
Some families say they have been forced to pay privately for treatment for their children, with some spending up to £2,000 a month.
Senior policy and campaigns officer at the charity, Epilepsy Action, Daniel Jennings said it was “disappointing” to see “very little has changed” since medicinal cannabis was legalised.
“Too many families who could potentially benefit from these treatments are not able to access them through the NHS, forcing many to fund expensive private prescriptions,” he said.
“We urge the government and Department of Health to ensure that policies are in place to allow clinicians to prescribe these medicines which have made a huge difference to many people’s quality of life.”
A Department of Health and Social Care spokesperson said the government has “already changed the law to allow specialist doctors to prescribe cannabis-based products where clinically appropriate and in the best interests of patients.”
A series of engagements are to be carried out in Westminster on Tuesday to highlight families’ struggle for NHS access.
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