Medicinal cannabis may have been legalised, but that doesn’t mean it is easy to get
May 2, 20190
Guidelines for how doctors across the UK can prescribe medicinal cannabis will be published next week by the Royal College of GPs due to mounting confusion over the new law.
They will make clear that the only people able to prescribe cannabis are specialist hospital doctors – defined as having specialist knowledge and expertise, and being on the General Medical Council’s specialist register – and not GPs.
Sources told i the RCGP guidelines will also cover the legality of use of the two forms of medicinal cannabis: Sativex, a mouth spray licensed in the UK for people with MS-related muscle spasticity that has not got better with other treatments, and Nabilone, which is prescribed for people to help with the side effects of chemotherapy.
The short and long-term side effects that cannabis can have, as well as signposting to further resources for GPs, and for GPs to refer patients to, will also be included. The guidelines will make clear that for some conditions, for example chronic pain, evidence on the benefits of using medicinal cannabis is very low.
The change in the law finally came after Home Secretary Sajid Javid listened to concerns from parents of children with conditions such as severe epilepsy, such as the mothers of Alfie Dingley and Billy Caldwell, whose conditions were causing up to 150 seizures a month.
According to the Royal College of Paediatrics and Child Health and British Paediatric Neurology Association (BPNA), cannabis-derived medicinal products must be defined by three areas: they contain cannabis, cannabis resin, cannabinol or a cannabinol derivative; they are produced for medicinal use in humans; and they are a medicinal product.
NHS England has written to NHS clinicians twice setting out what the change to the law means and the local governance arrangements that need to be put in place. However, campaign group End Our Pain say the NHS guidelines are “so restrictive that hardly anyone will be able to get a prescription”.
The group says “many thousands” of patients feel bitterly disappointed. “We don’t believe this is what the Home Secretary had in mind when he made the bold decision to re-schedule medical cannabis so that it could be prescribed following the high profile campaigns of Alfie Dingley and others.his is an outrageous situation” they add.
End Our Pain is helping 17 families, each with a child suffering from intractable epilepsy, who feel that they may now have to fundraise to go abroad to get the medical cannabis that has just been legalised in the UK. “This is as cruel as it is ridiculous,” the group says.
The family of Jorja Emerson is one of those. This month, the two-year-old, from Dundonald, near Belfast, became the first child to be prescribed medicinal cannabis in the UK.
Jorja was born with a rare chromosome disorder called 1q43q44 deletion syndrome. It causes developmental delay but is not life threatening. However, it has triggered stage 4 epilepsy and every seizure Jorja suffers – she has up to 30 a day – puts her life at risk.
The Emersons fought for over a year to secure the landmark prescription. Jorja’s father Robin, 33, said the NHS “turned its back” on them and it was only a neurologist at the private Portland Hospital in London that agreed to help the family.
For the few
The NHS itself admits that “very few people” are likely to get a prescription for medical cannabis. Currently, it is only likely to be prescribed for children and adults with rare, severe forms of epilepsy, and adults with vomiting or nausea caused by chemotherapy. And it would only be considered when other treatments were not suitable or had not helped.
Even if a patient does get accepted for Sativex, for example, its availability on the NHS is “limited”. The National Institute for Health and Care Excellence (NICE) does not recommend that NHS doctors prescribe Sativex, as it is not cost effective.
Mr Emerson is paying £3,000 for a three-month supply of medicinal cannabis for Jorja. “It’s a lot of money, but it’s a choice between my daughter staying alive and dying,” he said.
The cost of the drug, however, means it is not a long-term solution, and the Emersons blamed the bureaucratic nature of obtaining medicinal cannabis for further delays in getting the treatment. MPs on the the All-Party Parliamentary Group on Prescribed Use of Medical Cannabis are supporting Mr Emerson after he met with them in Westminster last week.
Sir Mike Penning, who chairs the APPG, said: “Parents like Robin already have more than a head full, coping with the stresses and strains of caring for very sick children. The last thing they need is a long and tortuous process to actually get the medicine that’s been prescribed. This assault course of bureaucracy needs sorting out once and for all.
“But in the meantime, if this prescription isn’t sorted soon I’m minded to ask a small cross party group of MPs led by myself and my co-chair Tonia Antoniazzi to go and get it from Canada and give it to Robin for Jorja.”
Last month, Edinburgh West MP Christine Jardine called for an urgent debate to be held in the House of Commons over the rigid guidelines governing the prescription of medical cannabis.
Among those supporting her call for the debate is Karen Gray, from Edinburgh, whose six-year-old son Murray suffers from severe epileptic fits. Ms Gray campaigned for medical cannabis to be prescribed on the NHS. She also lobbied to get Epidiolex, a medicine containing an ingredient from cannabis oil which she says has helped improve Murray’s condition.
Ms Jardine said: “I’m urging the Health Secretary to use every available means to work with the NHS, the General Medical Council and the relevant professional bodies to see these guidelines reworked so that they more properly reflect the historic law change.
” Ms Gray said the UK is “way behind” what other countries such as Canada, Holland and Spain are doing in this area of medicine.
NICE has been commissioned to produce a clinical guideline – expected in October 2019 at the latest – on the prescribing of cannabis-based medicines for a range of clinical conditions. In the interim, the BPNA and the Royal College of Physicians (RCP) have been asked to develop guidance around prescribing of cannabis-based products which covers children with rare, severe forms of epilepsy, and people with vomiting or nausea caused by chemotherapy.
An NHS England spokesperson said: “The new guidance will help individual medical professionals to use the available evidence to prescribe what is most effective for their patients and will not stop anybody getting the treatment they need. As set out by the Secretary of State, a second opinion service will give people access to a second clinical view if they disagree with their specialist’s recommended prescription.
” The NHS is collecting data on the number of prescriptions for medicinal cannabis but told i it was too early to publish the information.
Carly Barton, a former fine art lecturer, is believed to be the first person in Britain to have been prescribed cannabis since its legalisation for medical use last month.
The 32-year-old was left in constant pain after suffering a stroke in her twenties. She bought cannabis illegally to relieve the pain of fibromyalgia and is now thought to have obtained her first legal supply. The prescription came from David McDowell, a private pain specialist.
Ms Barton said that it was still very difficult for NHS doctors to prescribe the drug. “It’s momentous that this has happened,” she said. “It’s the first prescription that was written since cannabis was made illegal since 1928. It’s made history, this bit of paper.
” However, she cannot afford to buy a second batch of the cannabis, which is imported from the Netherlands. “The truth of the matter is that he’s given me a three-month supply that’s going to cost me £2,500. I’m going to blow all of my savings on this initial prescription, and after this three months is up I’m going to have to go back to being a criminal, breaking the law,” she said.
Dr McDowell said: “Although doctors have been given the potential to prescribe appropriately where they think the patient would benefit, the practicality is that it is impossible for patients currently to get a prescription for medicinal cannabis.”