People are spending thousands to get medical cannabis privately due to NHS ‘void’ – Metro.co.uk
Families are having to use their life savings to obtain medical cannabis privately, even though it was made legal last year.
The drug is almost impossible to get on the NHS as it has not been widely recommended by NICE, including for epilepsy.
It has created a ‘two-tier’ system where the drug is available privately but only at significant cost.
Parents are having to fundraise thousands of pounds to obtain the medicine they say is vital for their children.
Rachel Rankmore, 43, from Cardiff, has a private prescription for Bedrolite for her son Bailey, 17, who suffers with a severe form of epilepsy called Lennox-Gastaut Syndrome.
She says the full extract cannabis oil controls his seizures, each of which could kill him.
Bailey saw a consultant neurologist in London who prescribed the medicine, and the family get it to the UK from Holland via a specialist importer.
But it costs the family significant amounts of money they don’t have to be able to keep getting it.
Rachel told Metro.co.uk: ‘Our funds are running out. We pay £1,800 to £4,000 a month to keep our son well and we only have a couple of months left. They are putting a price on our children’s heads.’
She said she knows six or seven other families with a private prescription, and others who want to have one but don’t have the money.
‘Parents are remortgaging their houses, which we will probably have to look at doing,’ she said. ‘I’m a fulltime carer for Bailey and my other son, so we just have a single income.
‘How can private doctors prescribe it, but NHS ones can’t? It’s catastrophic for our children.
‘We fundraised an obscene amount of money from the local community and we were able to get Bailey a prescription. He has been on that now since July and it has had a startling effect. He still has a few seizures every day, but he’s able to play with his toys – it has given him a better quality of life.
‘We are still fighting for an NHS prescription.’
Doctor and medical cannabis campaigner Dr Frank D’Ambrosio, who prescribes the drug in the US to thousands of patients, criticised the UK approach saying: ‘It’s 100% available privately. There’s essentially a two-tiered medical programme in this country where if you have enough money, you can get a cannabis prescription.
‘If you don’t, and you’re relying on the NHS, you don’t have access.
‘It comes down to money. If you have the money, you can get cannabis. If you don’t have the money, you can’t.’
Dr D’Ambrosio, who visited Parliament twice last year and presented evidence to the World Health Organisation in Geneva in November 2018, said he was concerned about the ‘void in NHS prescriptions for medical cannabis, despite so-called legalisation of cannabis last year’.
The medicine is not available on the NHS because of concerns not enough research has been done into its benefits.
In a report in August, Paul Chrisp, director of the Centre for Guidelines at the National Institute for Health and Care Excellence (NICE) said: ‘We recognise that some people will be disappointed that we have not been able to recommend the wider use of cannabis-based medicinal products.
‘However, we were concerned when we began developing this guidance that a robust evidence base for these mostly unlicensed products was probably lacking.’
This article originally appeared here in https://metro.co.uk/2019/09/17/people-spending-thousands-get-medical-cannabis-privately-due-nhs-void-10756874/