Brexit: Cannabis medicine's halt 'devastates' epileptic girl's family

By Amy Stewart
BBC News NI

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image copyrightGibson family
image captionSophia has progressed so much since she started taking the cannabis medication, her mum says

The mother of a nine-year-old girl with a severe form of epilepsy is "devastated" after it emerged her supply of cannabis medicine from the Netherlands will stop due to Brexit.

Sophia Gibson, from Newtownards, County Down, has Dravet syndrome.

However, the UK Department of Health has confirmed her drug Bedrocan was no longer available in the UK.

That is because, since 1 January, prescriptions issued in the UK cannot be lawfully dispensed by an EU member state.

A UK government spokesman said it was "working urgently with the Dutch government to find a solution".

In a statement, the Belfast Health Trust said it was "seeking alternative medication in conjunction with expert advisors and in discussion with Sophia's family".

"Sophia's consultant has contacted her mum to discuss her concerns and options available," a spokeswoman added.

'She can now run'

However, Sophia's mother Danielle Davis said the medicine, Bedrolite/Bedrocan, had been working well for Sophia and that they were worried about what would happen when it ran out.

Sophia has not been in hospital with an active seizure since July 2018.

Before that, Ms Davis said, the family had to ring an ambulance every couple of days.

"We saw the staff in A&E more than we did our own family," she told BBC News NI.

image copyrightGibson family
image captionSophia and her dad Darren

"Her seizures have reduced tremendously - she can still take a few at night but they do not require emergency meds and she is not taking drop seizures during the day," she said.

"It really has changed her wee life - her learning has come on, her speech has come on and she can now run.

"It sounds so silly but just to see her so happy and relaxed - listening to all her new words and hearing her sing - she's just such a wee dote," Ms Davis added.

'Crying my heart out'

The family said they have about nine weeks supply of the drug left.

"I am just devastated," Ms Davis said.

image copyrightGibson family
image captionSophia first had access to the oil when her family took her to the Netherlands to get medical cannabis

"I am back to crying my heart out, I haven't slept and I have been up Googling: is there a way or a loophole that someone has missed?

"It is worrying to the point where you feel sick and can't eat - and how do you explain to a child that has learning difficulties her medication is getting taken away?" she said.

Ms Davis said she was very concerned that Sophia would regress.

"I am back to thinking are we going to lose her again?

"Her symptoms are so severe that the chances of her even getting to 18 are quite slim and when things have been so good for so long you do start to get relaxed," she added.

"They have been talking about changing medications but if it's not broke, don't fix it.

"You can offer my child a like-for-like product all you want but it's never going to be 100% the same.

"I never in a million years thought if there was an issue with her medication that it would be to do with Brexit."

image copyrightGibson family
image captionSophia Gibson, from Newtownards, has Dravet syndrome

The UK's Department of Health and Social Care wrote to pharmacy suppliers on 15 December asking them to take "immediate action to work with prescribers and clinics to ensure supply against current prescriptions and identify alternative products that may be suitable for their patients".

Northern Ireland's Department of Health has said it has written to health trusts to "highlight this issue and to request that arrangements are put in place to review treatment for affected patients".

A spokesman said: "We sympathise with patients dealing with challenging conditions and know that any potential change to treatment can be very concerning."

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