Parents of children with severe epilepsy have joined forces to condemn what they see as failure on access to medical cannabis.

Dozens of mums and dads will meet at Parliament today as part of a campaign to make it easier for their youngsters to be prescribed the medication on the NHS.

Emma Appleby says her fight for her daughter's medication will continue

Three years ago this month, medical cannabis was first legalised for this condition but young patients still face an almost total block on NHS access, their parents explain.

The families, many of whom campaign under the End Our Pain banner, have to pay privately for the medicine and only three have ever had NHS prescriptions.

One such couple is Emma Appleby and Lee Moore, of Milner Crescent, Aylesham, whose daughter, Teagan, 12, has severe epilepsy.

They have only a private prescription and have to find £2,000 a month through fundraising.

Mrs Appleby, who is one of those attending Parliament today, told KentOnline: "The government says it's down to the NHS and the NHS says it's down to the government.

"The government either needs to get prescriptions on the NHS or pay for private prescriptions."

Medicinal cannabis has proved life-transforming in its ability to drastically reduce seizure rates.

To mark the anniversary of it being legalised, every MP has been invited to attend the Parliamentary event to highlight the continued crisis.

The parents will also display a digital poster van outside Parliament which will show the physical transformations many of these children have experienced since they started taking medical cannabis.

The families also plan to walk to 10 Downing Street in a direct appeal to Prime Minister Boris Johnson to help their children.

'It cannot be beyond the wit of one the most sophisticated health establishments to help.'

Peter Carroll, director of the End Our Pain Campaign, said: “On the third-year anniversary of what should have been a landmark law change, rather than celebrate progress, we are here today to highlight a horrendous crisis.

"All the powers that be continually express sympathy – but then simply explain why they can’t help.

"Surely, it cannot be beyond the wit of one the most sophisticated health establishments in the world to help these families."

Sajid Javid, as Home Secretary, allowed the law change in 2018 but is now being urged to take further action in his present role as Health Secretary.

Mr Carroll added: "How on earth can we have a law change allowing NHS access resulting from the campaigning efforts of families that ends up in nearly all other children with similarly severe epilepsy being denied NHS access?”

Tonia Antoniazzi MP, co-chairman of the All-Party Parliamentary Group for Access to Medical Cannabis Under Prescription, said: “The situation we find ourselves in today is a complete and utter disgrace.

"The government have failed to help the very children they pledged to support in 2018.

"Three years have passed since the law change. These children do not have time to wait a day longer.

"The government have the power here to make a positive change and for every second they do nothing, lives are needlessly being put at risk.”

Campaigners have presented potential temporary solutions including interim funding of private prescriptions.

'Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.'

Others are the establishment of an access fund and the commissioning of an alternative observational trial to get the families cost-free access to the medicine.

They say that so far none of these ideas have been accepted by the government.

A Department of Health and Social Care spokesman said: “Our sympathies are with all patients and families dealing with rare and hard to treat conditions.

"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.

“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.”

NHS England has also been approached for a comment.

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