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A Kent mum joined a mass lobby of MPs over medication for severely epileptic children.
Emma Appleby, mother of Teagan, 10, and others sharing her plight complain of lack of access to prescribed medicinal cannabis for their youngsters.
Phil Wellbrook went to Westminster to speak to Emma
The group in the initiative, called End Our Pain, will met politicians at Westminster today. The families had their hopes of access to medical cannabis on the NHS raised with a change in the law in November 2018.
But they argue that they are still being denied access.
Ms Appleby, of Aylesham, said: "We currently travel abroad to collect Teagan's medication at a cost of £2,500 per month. I am committing an offence bringing it back into the UK without an import licence, but as the costs are so high, I am unable to afford this licence.
"I have been stopped on numerous occasions by customs officers and had the medication confiscated. It has then been returned a few days later.
"I cannot carry on paying £2,500 per month to keep my daughter alive. I am out of funds. I have been fundraising for a year and I have nothing left.
"We are desperate for the government to step in and help us."
The group met MPs and members of the House of Lords at Portcullis House from noon to 2pm today.
They had a giant digital poster van at Old Palace Yard and outside the Department of Health and Social Care and the Conservative Party HQ.
The families also went to the door of 10 Downing Street this afternoon.
The group had handed in personal letters addressed to Prime Minister Boris Johnson last September urging him to intervene.
The families say they have to pay about £2,000 a month to access medical cannabis privately even though it is legal here. As a result many are facing financial ruin.
As a result of previous campaigning, Health Secretary Matt Hancock tasked the NHS to carry out review of why the medicinal cannabis isn't prescribed. It said that it was trying to help with some form of trial.
The campaigners are now demanding that the Department of Health & Social Care also takes action.
They say it should pay for the private prescriptions until the NHS can properly unblock the system.
A Department of Health and Social Care spokesperson said: “We sympathise with those patients dealing so courageously with challenging conditions.
“Two cannabis-based medicines have recently been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear demonstrated evidence of their safety, clinical and cost effectiveness.
“We continue to work hard with the health system, industry and researchers to improve the evidence base for other cannabis-based medicines.”
Read more: All the latest news from Canterbury
