Families fight back against system failings

Parents of children with severe epilepsy held a protest at Westminster recently over the government’s failure to open up medical cannabis prescriptions on the NHS.

In November 2018 new legislation was introduced, supposedly allowing doctors to legally prescribe medical cannabis for certain conditions.

The move proved a false dawn for many parents seeking access to potentially life-saving products for their children with severe epilepsy, however.

Private prescriptions have been readily available, although they can cost families thousands of pounds per month, prompting some to take drastic measures such as putting their family home on the market and launching charitable foundations just to enable them to make ends meet while treating their children.

But the NHS prescriptions that families were expecting have not materialised, almost 18 months on from the legislative change.

In response, around 20 families gathered at Portcullis House in central London to pressure the government into ensuring the medicine is given to those who need it.

A Department of Health and Social Care spokesman said: “We continue to work hard with the health system, industry and researchers to improve the evidence base for other cannabis-based medicines.”

Last November, NHS England said access to Epidyolex, which contains only the CBD extract, had been fast-tracked to be available from January this year.

The medicine was recommended for use on the NHS to treat two rare types of epilepsy, Lennox-Gastaut and Dravet syndromes. Many parents, however, want to see other products, including those containing THC, also accessible on the NHS.

They are calling for a judicial review of NHS rules and National Institute of Healthcare and Excellence (NICE) guidelines.