Families Launch Legal Action over NHS Prescription Block to Medical Cannabis

Campaigners working with a number of families, each with a severely epileptic child, have announced today that they are preparing to take legal action against the NHS and NICE to challenge the failure of the NHS to prescribe what, for their children, is a life transforming, and possibly, a lifesaving treatment – medical cannabis – and the failure of NICE to take a clear position on whether it can be prescribed in such cases. The announcement comes as the families converge on Parliament to lobby MPs over their plight. Access to the form of medical cannabis that was shown to be life transforming for a number of high profile cases in the summer of 2018, such as that of then 6 year old Alfie Dingley, was legalised on 1stNovember 2018. However, since that date, campaigners believe that not a single new NHS prescription has been issued for what is termed as whole plant medical cannabis ie that containing both of the two main components of medical cannabis, CBD and THC. As a result, families desperate for access have had to turn to the private sector and are having to raise of the order of ￡2,000 per month to pay for the medicine.

Director of the End Our Pain campaign Peter Carroll, which fights for access to medical cannabis under prescription, said, ‘This is a national scandal, and a cruel one at that. These families have children with intractable drug resistant epilepsy. Their hopes were raised in November 2018 that they too would be able to get medical cannabis on the NHS just like Alfie. But they have faced delay, obstruction and outright refusal by the NHS to prescribe. The NHS Trusts seem to be saying that the NICE guidelines are the problem. And NICE are saying that their guidance doesn’t prevent NHS prescriptions. So these vulnerable families are left in the middle, having to fundraise ￡2,000 a month as well as having to care for a very sick child. It cannot be right that these two powerful bodies appear to blaming each other whilst families are left to suffer’.

The NICE guidelines were formally issued on 11 November 2019. A number of doctors and Trusts have cited them as being the reason for refusing to prescribe.

The planned action will be a judicial review, potentially against both NICE and a specific NHS Trust.

Sir Mike Penning MP, co-chair of the All Party Parliamentary Group (APPG) on Access to Medical Cannabis Under Prescription said, ‘It is a travesty that these wonderful, loving caring families are having to resort to the courts to try and secure access to a medicine that was legalised way back in November 2018. The Secretary of State and the Prime Minister himself need to take this problem on. To end up in a situation in which a medicine is legalised, but then no-one can get it is ridiculous and cruel. There is much talk in the medical world about the need for evidence that medical cannabis is safe and works. But they are missing the point in the case of these children. The parents have proved it works for their child as they have been getting it privately for months and have recorded the transformation in their child’s quality of life’.

Tonia Antoniazzi, co-chair of the APPG said, ‘The medical world talks about safety as a possible bar to prescribing. But it seems beyond belief that the NHS is happy to routinely prescribe powerful pharmaceutical drugs designed for adults to these children even when the adverse side effects of those drugs are fully recognised as severe, but then baulks at prescribing medical cannabis.’

Ronnie Cowan MP, a long time campaigner on the issue said, ‘The constant delays and frequent promises regarding the provision of medical cannabis only add to the frustration and disappointment of those who can benefit from it. To know that medicine is available but not be able to access it because the UK Government can’t either get its act together or are not minded to, shows incompetence, ignorance or collusion. Clarity must and will be sought to ensure that market forces are not taking precedence over patient's needs. Until the UK Government gets its act together many people are still going to source medical cannabis from abroad or with the risk of prosecution hanging over them. This is not an acceptable situation. I have no intention of easing off the pressure on the UK Government and shall take every opportunity to take them to task over this issue.’

Peter Carroll added, ‘It would be shameful if the Government, the NHS Trusts and NICE stood back and forced the families into these emotionally draining legal action. This can all be sorted by the various arms of the Government, the medical establishment and the NHS working together. It cannot be beyond the wit of humanity to find a way forward that gets these very sick children the medical cannabis they need’.