A nine-year-old boy has asked Prime Minister Boris Johnson to let his brother be prescribed medical cannabis to manage his epilepsy.
Medical cannabis was legalised in November 2018, but since then only three prescriptions have been written for it, according to campaign group End Our Pain.
The medication can only be prescribed by the NHS in ‘exceptional’ cases.
The families of those who have been refused a prescription have had to pay for the drug privately, which can cost up to £2,000 a month.
Thomas, right, went to No 10 Downing Street today with his mum Ilmarie Braun, left, to deliver a letter to Prime Minister Boris Johnson, asking him to help his brother Eddie get a prescription for medical cannabis
Epidyolex is the only cannabis-based treatment licensed in the UK to treat epilepsy and can also be prescribed for chemotherapy and multiple sclerosis.
The medicine contains cannabidiol (CBD), which is different to tetrahydrocannabinol (THC) – the chemical that makes people high when they smoke weed.
WHY PRESCRIPTIONS ARE RARE EVEN THOUGH IT’S LEGAL
Medical cannabis refers to any medicine made from the cannabis plant and has been legal in the UK since 2018.
Epidyolex is the only cannabis-based treatments licsened in the UK to treat epilepsy. It contains a chemical found in the plant – cannabidiol (CBD).
But Epidyolex can only be prescribed for patients with Lennox-Gastaut syndrome and Dravet syndrome, according to the NHS.
Both of these conditions are extremely rare forms of epilepsy, occurring in approximately one in 15,000 (Dravet) and one in 50,000 (Lennox-Gastaut) children.
This suggests that in the UK the two, combined, account for only around 6,000 people, including adults who may be less likely to get it than children.
The medicine will only be considered when other treatments were not suitable or ineffective, further reducing the pool of people who might be eligible.
The NHS warns that very few people in England are likely to get a prescription for medical cannabis.
The medicine will only be considered when other treatments were not suitable or ineffective.
Charity Epilepsy Action warned that despite legalising medical cannabis, the 2018 legal change was ‘extremely restrictive’.
Children and adults with other complex and treatment-resistant epilepsy syndromes could also benefits from the medicine, it said.
The drug regulator the National Institute for Health and Care Excellence (NICE) recommends that CBD only be used for treating seizures associated with Lennox–Gastaut and Dravet syndromes, both rare forms of epilepsy, under certain conditions.
The patient should be checked every six months and if the frequency of their seizures has not fallen by at least 30 per cent the treatment should be stopped, according to NICE.
The Braun family are calling for the Government to intervene and speak with them about the problems getting access to medicinal cannabis on the NHS.
The subject has been controversial since the drug was approved, with families frustrated that it is available in principle but extremely difficult to get hold of.
In his letter, Eddie’s brother Thomas said his brother means ‘everything’ to him and has severe, complex epilepsy and can suffer up to 100 seizures a day and needs a lot of additional care.
His parents should not have the ‘added worry of having to find lots of money to pay for his medicine’, which costs up to £780 every month.
When describing the day, Thomas said: ‘I felt nervous, it was intimidating. But it was also very exciting, because this is my chance to actually help change my brother’s life and family’s life.
‘If the Government would pay for it, we wouldn’t have to worry about fundraisers and things, and that will give us more family time.’
Ilmarie Braun, Thomas and Eddie’s mum, said their family and friends have helped raise money through fundraisers so they could afford Eddie’s medicine, but other families have had to stop buying it or sell their homes to afford it.
She said: ‘Being a parent is wonderful and it can also be challenging. Then being a parent to a child who has complex needs is in its whole own world of difficult because you have to fight for access to everything.
‘A school place, adaptations at home to make it accessible, the right wheelchair, to then try to manage Eddie’s medication needs, that’s just beyond what’s reasonable.’
‘We want Boris Johnson to act now. He can unlock emergency funding to cover this whilst all of the necessary steps are taken to commission the trials, all of these things that they’ve been talking about for three years that need to happen.’
Thomas Braun, left, Ilmarie Braun, right, and their family pay £780 every month so Eddie Braun can get treatment on the NHS
Ilmarie Braun, left, and Thomas Braun, right handed a letter over to the police officer outside No 10 today. They are calling on Prime Minister Boris Johnson to speak with them about the problems of access to medicinal cannabis on the NHS
Eddie Braun has severe, complex epilepsy and can suffer up to 100 seizures a day
Hannah Deacon, whose son Alfie Dingley has an NHS prescription for medical cannabis to treat his epilepsy, wrote a letter to the Boris Johnson last week about the transformative effect of the medication on her son.
A campaign run by the Deacon family and others was the tipping point for Government to legalise medical cannabis.
Ms Deacon, from Warwickshire, who came to Downing Street to support Eddie’s family, said: ‘Alfie got his NHS prescription on the 19th of June 2018 and it’s been like night and day.
‘His life has gone from being very severely affected by seizures to having a year seizure-free in May, and his quality of life and our family has improved because of this medicine.’
The Braun family and Ms Deacon are calling for the Government to intervene and speak with them about the problems of access to medicinal cannabis on the NHS.
A Department of Health and Social Care spokesperson said: ‘We recognise the huge challenges faced by children living with rare and hard to treat conditions.
‘The government changed the law to allow specialist doctors to prescribe unlicensed cannabis-based products for medicinal use where it is clinically appropriate and in the best interests of patients.
‘Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their safety and clinical effectiveness.’
Others have also urged the government to act on the difficulties faced by those trying to access the medicine.
In September 2019, 10 families – including the Brauns – marched to No10 to demand their epileptic children are given medical cannabis on the NHS after none of them had received a prescription despite the medicine being legalised.
On Monday, medical cannabis campaigners Billy and Charlotte Caldwell delivered a letter to Health Secretary Matt Hancock and the DHSC urging them to support the first NHS medical cannabis clinical study, and for the National Institute for Health Research to fund it.
The Care Quality Commission, which regulators and inspects health and social care services in England, approved the first medical cannabis clinic in England in October 2019.
It allowed London-based private practice Sapphire Medical Clinic to prescribe cannabis-based medicine.
HOW IS MEDICAL CANNABIS USED?
A broad term for any sort of cannabis-based medicine used to relieve symptoms.
Some products that might claim to be medical cannabis, such as CBD oil or hemp oil, are available to buy legally as food supplements from health stores.
But there’s no guarantee these are of good quality or provide any health benefits.
And some cannabis-based products are available on prescription as medicinal cannabis. These are only likely to benefit a very small number of patients.
Epidyolex for children and adults with epilepsy
Epidyolex is a highly purified liquid containing CBD (cannabidiol).
CBD is a chemical substance found in cannabis that has medical benefits.
It won’t get you high, because it doesn’t contain THC, the psychoactive chemical in cannabis.
Nabilone for chemotherapy patients
Many people having chemotherapy will have periods where they feel sick or vomit.
Nabilone can be prescribed by a specialist to help relieve these symptoms, but only when other treatments haven’t helped or aren’t suitable.
Nabilone is a medicine, taken as a capsule, that has been developed to act in a similar way to THC.
The medicine has been licensed in the UK, so has passed strict quality and safety tests, and is proven to have medical benefit.
Nabiximols (Sativex) for MS
Nabiximols (Sativex) is a cannabis-based medicine that is sprayed into the mouth
It is licensed in the UK for people with MS-related muscle spasticity that hasn’t got better with other treatments.
But its availability on the NHS is limited. The National Institute for Health and Care Excellence (NICE) does not recommend that NHS doctors prescribe Sativex, as it is not cost effective.
There is some evidence medical cannabis can help certain types of pain, though this evidence is not yet strong enough to recommend it for pain relief.