Rochdale MP Sir Tony Lloyd says govt must fix medicinal cannabis 'crisis' affecting children with extreme epilepsy

Rochdale MP, Sir Tony Lloyd has called on the government to fix the ‘crisis’ affecting the families with children suffering from extreme epilepsy who cannot secure NHS prescriptions for medical cannabis, a treatment which has proved to be lifesaving and life transforming for their children.

An investigation by the Mirror has revealed that despite the law change - and following NHS prescriptions for the three most high-profile child cases - NHS England has now halted funding the unlicensed medicines in a secret U-turn.

According to the Mirror, 90 children are having NHS prescriptions denied for the only drug found to halt their life-threatening seizures – and NHS England says individual hospitals must fund any such ‘high cost’ unlicensed prescriptions but trusts fear that agreeing to pay for one will set a precedent and bankrupt them.

The UK currently has one paediatric neurologist prescribing cannabis-based medicines for children with severe treatment resistant epilepsy. 

Cost and funding the cannabis-based products for medicinal use (CBPM) has been cited as a key barrier to accessing the medication, according to a 2019 NHS report.

In normal circumstances for unlicensed medicines, NHS Trusts would be responsible for identifying funding for individual patients. Trusts tend to fund medicines for lower cost products, and for short term use only.

Official NHS guidance says that almost all CBPM prescribed by specialist doctors are “unlicensed medicines and are therefore prescribed as ‘specials’.”

A ‘special’ is a product which “has been specially manufactured or imported to the order of a doctor, dentist, nurse independent prescriber, pharmacist independent prescriber or supplementary prescriber for the treatment of individual patients.”

In the 2019 report, the NHS says several trusts made Individual Funding Requests, but said that funding the medication would be “unsustainable in the long term.”

MP Jeff Smith told Parliament in December 2021 that the higher authority is “usually reluctant to fund because of the problem relating to evidence and contradictory guidance,” adding that “the process applies to no medicines other than medical cannabis.”

Official government guidance states that exceptional cases for funding can be made to NHS England or a regional Clinical Commissioning Group (CCG), by hospital trusts, through the standard NHS process for ‘high cost’ unlicensed drugs.

The Mirror says NHS England internal advice is that unlicensed cannabis drugs such as Bedrolite are “not eligible” for this Independent Funding Review process, despite latest official published guidance stating that trusts could be reimbursed for unlicensed medicinal cannabis through the process.

Mr Lloyd joins several cross-party MPs who wrote to the Health Minister Sajid Javid, calling for change. They say that since Mr Javid granted the first licences to Alfie Dingley and Billy Caldwell [two of the three most high-profile child cases granted medicinal cannabis], “only three NHS prescriptions have been issued for this type of medical cannabis that continues to be life transforming for these children, despite the law change of November 2018.”

The MPs add: “Dozens of other families have had no other option but to continue to raise up to £2,000 per month to fund private prescriptions. And now, revisions to guidance from the British Paediatric Neurology Association (BPNA) appear to be shutting down access to further private prescriptions."

They go on to write that "we hope that you will consider convening a roundtable of the relevant stakeholders to try and find solutions," adding "the government is uniquely placed to bring all the key stakeholders together.”

Mr Lloyd, who has supported the legalisation of medicinal cannabis, said: "Medical cannabis was legalised four years ago, but many patients still can’t get access and for those who should benefit, their suffering continues. Quite frankly, that's outrageous.

"There is considerable benefit of access to medical cannabis. In some cases, patients who are almost comatose after being pumped full of powerful pharmaceutical drugs and still wracked by seizures are almost seizure free and living close-to-normal lives after having access to treatment.

"On the back of the law change, there is now a growing private medical cannabis sector issuing prescriptions for a range of conditions in adults which was made possible by the 2018 law change, a change which is largely down to the campaigning efforts of the families of the children with extreme epilepsy, and yet, no other similar families can get access to the medicine.

"The government must now look at ways to overcome the current clinical barriers. My message to the government is clear: get on with it."

A review published in the British Medical Journal on 27 June has recommended allowing GPs to prescribe medicinal cannabis as part of a national trial.

The review by Christopher Hodges, emeritus professor of justice systems at the Centre for Socio-legal Studies at the University of Oxford, calls for a new regulatory framework for the sector to “turbocharge UK cannabinoid innovation.”

He said, “It is no longer wise or sustainable for the government to continue to take a distanced, disinterested, or laissez faire attitude to the sector as a whole, as it has done since the cannabis sector’s inception.”

The report, commissioned by the Centre for Medicinal Cannabis and the Association for the Cannabinoid Industry, says that in the area of consumer cannabinoids and CBD there has been too little regulation and that tighter rules are needed to safeguard the consumer and build up public trust. But in the area of medical cannabis it argues that regulations are too onerous and restrictive in some areas and too lax or entirely absent in others.

The review makes 20 recommendations, including calling on the government to set up a single steward authority to govern and guide the entire sector, at arm’s length from ministers.

It also calls for the creation of a national patient registry for all cannabis-based medicines prescribed in the UK so that real world evidence can be built up. It also calls for a single formulary to provide doctors with an up-to-date list of cannabis-based medicines.

A survey of 1,500 people given in the report found that two thirds believe GPs should be allowed to prescribe medical cannabis. And 63% of respondents would be supportive if a family member was taking medicinal cannabis to dealt with a health condition, with only 8% saying they would be somewhat or very opposed to it.