- Billy Caldwell, 17, has intractable epilepsy causing up to 400 daily seizures
- Was first patient in Britain to be prescribed cannabis-based medication on NHS
- Medicine was legalised in 2018 but just three people have been prescribed it
- Mother Charlotte appeared on This Morning to discuss campaign to help families
- She said she is ‘inundated’ with messages from others in similar position to her
- Claimed NHS doctors rarely prescribe drug because there is ‘so much to learn’
A mother who campaigned for use of medical cannabis to keep her epileptic son alive has said she is ‘inundated’ by messages from other families in a similar position.
Billy, a lively 17-year-old boy with autism and intractable epilepsy, from Castlederg, County Tyrone, became the first patient in Britain to be prescribed cannabis-based medication on the NHS after enduring up to 400 seizures a day and routinely ending up in hospital.
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.
Appearing on This Morning today, Billy’s mother Charlotte said she has receives daily messages from families in a similar position to hers who are struggling to access the drug – or even paying to access it privately.
She claimed doctors rarely prescribe the drug, saying: ‘There’s so much to learn about this medicine, it’s so complex.’
After years of campaigning, Billy was deemed eligible for the cannabis oil prescription and has now been seizure free for over a year.
But unfortunately, this is not the end of Charlotte’s campaigning because she is determined to help others needing the same support.
She said: ‘We have set up a foundation whereby we are proposing we carry out real world evidence studies to gather needed data for our wonderful NHS doctors.
‘The other objective is to relieve the financial burden of thousands of other Billys throughout the UK who are paying for the drug.’
She explained: ‘The issue is NHS doctors don’t have the evidence, the clinical data evidence, that’s the issue. There is so many different compounds, different strains, different formulations.
‘We need to gather the data now to move this forward and give doctors the confidence.’
Meanwhile Doctor Ellie explained: ‘Charlotte is absolutely right. We just don’t have the data.
‘When it was licensed a few years ago, there’s very specific cases when you can prescribe, in certain cases of chemotherapy or spasticity, but it’s incredibly specialised.
‘The medicine is all very different. It’s incredibly specialised and can only be prescribed by someone on a specialised register and even in those cases, on a case by case basis. ‘
Charlotte added: ‘I think the main fear for NHS doctors is the THC component of the medicine.’
Despite that, she insisted: ‘Medical cannabis has not only given me back my right as a mummy to hope but it’s given Billy back his right to life.’
She continued: ‘The last five years Billy and I have been campaigning, I’ve been inundated with requests from families with children like Billy but not only that.
‘Chronic pain, MS or a number of different conditions.’
‘At the moment we have approximately 120 epilepsy patients – children and adults – prescribed medical cannabis by private prescription.’
It comes as a nine-year-old boy asked Prime Minister Boris Johnson to let his brother be prescribed medical cannabis to manage his epilepsy.
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.
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.
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.’
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 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.
Source: The Dailymail