Most people will remember heart rending stories last summer about Alfie Dingley, the seven-year-old who suffered from a rare form of epilepsy that caused him to have up to 150 seizures month. No conventional epilepsy medication worked for Alfie, but his seizures could be effectively eliminated by using medical cannabis.
Image courtesy of the Press Association
Hannah Deacon, Alfie’s mother, with the help of neurologist Professor Mike Barnes, ran a high profile campaign which finally resulted in the Home Office granting her a special license to import medical cannabis from the Netherlands for Alfie’s use. Legislation was then put in place to legalise the use of medical cannabis when prescribed for a certain limited number of conditions for which, as the Chief Medical Officer Professor Sally Davies said, ‘medical cannabis showed some clinical benefits’.
Professor Davies also called for more research into medical cannabis and its possible uses so that a body of evidence from ‘gold standard’ scientific studies could be built up and the products could be considered for licensing and moved to ‘their rightful place in medicine’.
Dame Sally’s call is perfectly reasonable but….
- Building up a ‘body of gold standard evidence’, no matter what the substance being studied, takes years and a major investment – and
- ‘Gold standard scientific studies’ (DBPCT – double blind placebo controlled trials) have been designed for single molecules. Cannabis is made up of around 100 cannabinoids, 100 terpenes and 20 flavonoids, all of which work synergistically. So a standard DBPCT simply does not work for them.
Meanwhile, there is already significant evidence of cannabis’ efficacy in a number of conditions (epilepsy, pain control, multiple sclerosis to name but three) for which there are no other successful conventional, drug based treatments. A situation recognised by the Home Secretary in initially granting a license to Alfie Dingley and subsequently legalising the use of medical cannabis, on prescription, for this condition. But, there lies the problem.
As of now, apart from Professor Barnes, there are a vanishingly small number of doctors who know or understand anything about the use of medical cannabis. Understandably, doctors are reluctant to prescribe a treatment about which they know little and understand less. Especially one that has a scary reputation – even though that reputation refers to the recreational use of the often-adulterated street drug which is a million miles away from the therapeutic use of prescribed medical cannabis.
So doctors, many of whose waiting rooms are besieged by patients asking for cannabis prescriptions, have been calling for guidance. But they have not got it. So far the only guidance offered has been from Royal College of Physicians and British Paediatric Neurology Association, both of whom specified that the only doctors allowed to prescribe medicinal cannabis must be ‘specialists’ – and NHS England who says that it only expects cannabis-based products for medicinal use to be prescribed ‘where there is clear published evidence of benefit’.
What this means is that while Alfie Dingley can still get legal access to the medical cannabis that keeps him seizure free, because it is prescribed for him by Professor Barnes (a recognised ‘specialist’) – no other children with rare forms of epilepsy (nor those for whom cannabis might provide pain relief, improve muscle function etc etc) can access it at all.
‘The situation is appalling,’ says Professor Barnes. ‘Not one patient has benefited from a cannabis prescription on the NHS. The legislation has had no impact on the health of people who remain criminalised due to the lack of education of the medical community and overcautious guidelines produced by the Royal College of Physicians and the British Paediatric Neurology Association.’
Emma and Teagan
All of which has resulted in the seizure by customs officers last week of £4,500’s worth of medical cannabis that Emma Appleby had bought in Holland to try to control the 300 seizures a day suffered by her daughter Teagan. (Teagan has a rare chromosomal disorder as well as Lennox-Gastaut syndrome.)
Emma had been trying, without success, to get a prescription for medical cannabis for Teagan since it became legal last year but had failed. In desperation she raised the money to buy it in Holland and asked for a compassionate import license so she could bring it back to the U.K. But the Home Office refused. So the medicine was confiscated from her at Southend Airport on Saturday morning.
Hannah Deacon, Alfie’s mum, has now started a petition on Change.org to get the government to release Teagan’s medical. Please do sign up.
So, as Professor Barnes says, nothing has changed. If you want to get medical cannabis the only way you will be able to do so is to find physician who will, privately, prescribe it for you– or to buy it on the internet and risk being criminalised and having it confiscated as a result.
What to say?……