Open Letter to Labour Minister Karin Smyth Mp
On the 30th of January a debate was held on the topic of medicinal cannabis, in particular the lack of progress in facilitating access to this as a treatment route for epilepsy.
We were hugely heartened to hear MPs from all parties speak with such compassion on this complex issue. Jermone Mayhew MP highlighted that the current approach for commissioning medications within the NHS can hamper progress around personalised treatments and rare conditions, including paediatric drug-resistant epilepsy. Susan Murray MP spoke of the gulf between the original policy intention of 2018, when these medications were first made available, and the reality of the situation now; it remains almost impossible for children with even the most drug-resistant, devastating forms of epilepsy to access the treatment via the NHS. Shadow Under Secretary for Health, Dr Luke Evans MP – referencing Medcan’s Open Secret study – stressed the plight of the hundreds of UK families who have resorted to giving their children illegal cannabis because they are unable to access prescription medications.Â
Unfortunately, Labour Minister Karin Smyth made it clear that she and the Labour Government are not willing to take the steps required to address this urgent situation. It is important that the Government understands that a policy of inaction is a policy of complicity.
During the debate of the 30th Ms. Smyth MP again declined to meet with experts and patient groups to discuss the situation. It is vital the Government provide clear and unambiguous answers to three specific questions:
- What is their response to the growing consensus that the upcoming trials, far from being ‘world-first’ or a solution to the current policy failure, are poorly designed, outdated in approach, and using inappropriate products?
- What specific action will the Government take to address the increasing number of families turning to illegal cannabis to treat children as young as three, due to the unavailability of appropriate cannabinoid medications via the NHS?
- While more research is needed for population-wide prescribing, NICE guidelines clearly state clinicians can prescribe on an individual basis; what steps will the minister take to ensure trusts and hospitals correctly follow these guidelines and do not place obstacles in the way of clinicians who wish to prescribe for their paediatric patients with drug-resistant epilepsy?
Despite being one of the most common neurological conditions, Epilepsy remains under-funded, under-studied and under-prioritised. 30% of people diagnosed will not
be able to control their seizures with existing licensed medications or surgery. There is an urgent need for new options, and there is no logical, ethical or clinical argument for placing obstacles in the way of a life-saving treatment avenue when the harms of drug-resistant epilepsy are so established and so devastating.
We recognise this treatment comes with stigma, but families of children with drug resistant epilepsy are not pro-cannabis, they are anti-seizure. The parents we represent would give all they have for their child to be offered a fully tested, long-term-licensed medications that works. But no such drug exists. In its absence, they must turn to whatever treatment helps in the battle to keep their child alive. Rather than place more challenges in their way, we ask that the Government stand with them in that fight.
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