Parents from across the Midlands are travelling to Westminster today to lobby of MPs over medication for severely epileptic children.
Medical cannabis was legalised in 2018 but many parents are spending thousands of pounds each month on the treatment.
Samantha Fairlie from Leicestershire spends over £1200 per month on the medicine for her daughter who has severe epilepsy.
Ms Fairlie says the cannabis is so expensive, she's been forced to consider selling her home.
Campaigners working with a number of families, each with a severely epileptic child, have announced that they are preparing to take legal action against the NHS and NICE to challenge the failure of the NHS to prescribe medical cannabis.
What is medical cannabis?
Medical cannabis" is a broad term for any sort of cannabis-based medicine used to relieve symptoms.
Many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous.
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.
Who can get a prescription for medical cannabis?
Very few people in England are likely to get a prescription for medical cannabis Currently, it is only likely to be prescribed for the following conditions
children and adults with rare, severe forms of epilepsy
adults with vomiting or nausea caused by chemotherapy
people with muscle stiffness and spasms caused by multiple sclerosis (MS)
It would only be considered when other treatments were not suitable or had not helped.
The only person in the country with a free prescription is Alfie Dingley, whose mother Hannah Deacon still leads the campaign for others to get access to cannabis free of charge.
Health Secretary, Matt Hancock, said this morning that the delay for prescriptions was due to making sure the NHS gets "good value for money". He explained that the government is making progress but it also needs the support of drug companies.
A NICE spokesperson said: “When we recommend a treatment 'as an option', the NHS must make sure it is available, usually within 3 months of the guidance being published... Our clinical guideline covering the prescribing of cannabis-based medicinal products for severe treatment-resistant epilepsy doesn’t make any recommendations about the use of unlicensed cannabis-based medicines. It does, however, recognise the need for patients to have access to cannabis-based medicines where they are shown to be effective and to that end it calls for more research to build the evidence base for their use.”