My son thrives on cannabis oil - but the draft NICE guidelines entrench the difficulties of getting Eddie the prescription he needs

Viewpoint by Ilmarie Braun

Last week saw both the publication of the draft NICE guidelines and the findings of the NHS Review commissioned by the Heath Secretary Matt Hancock into the barriers families like ours are facing in accessing an NHS prescription for medicinal cannabis products.

Both the guidance and the review shattered the tiny hope I had been clinging on to that either of these documents would make our fight to get my son Eddie a prescription easier. Eddie has severe epilepsy and cerebral palsy. Cannabis oils have drastically reduced Eddie’s seizures and given him much improved quality of life.

Last June the Home Secretary Sajid Javid promised to look into rescheduling medicinal cannabis, as it had “become clear to me that the position we find ourselves in currently is not satisfactory. It is not satisfactory for the parent, it’s not satisfactory for the doctors and it’s not satisfactory for me.” In November 2018 he did something incredible and moved cannabis-based medicines into schedule 2, enabling their to prescription by licenced doctors. Javid “stressed the importance of acting swiftly to ensure that where medically appropriate, these products could be available to be prescribed to patients.”

And yet, here we are in August 2019 and no new NHS prescriptions have been successfully written for paediatrics. And this is not because they are not ‘medically appropriate’. Indeed, Eddie’s doctor wanted to prescribe but was unable to secure the funding to do so. Instead we are seeing more and more barriers being put into place. 

The NICE guidelines simply appear to entrench the already overly restrictive guidelines produced by the BPNA/ABN/RCP. For the families that End Our Pain are supporting and the countless other families out there waiting and hoping for access to lifechanging cannabis-based medicines (CBMPs), this is highly distressing and it constitutes the most significant barrier to our children being able to access these medicines on the NHS.

Eddie is thriving on cannabis oils. But there is only so long that we can hope to raise the funds needed to maintain Eddie’s private prescription - it currently costs around £2000 a month. If the guidelines in their current form are likely to be final, keeping NHS access almost impossible, then the choice between allowing Eddie to go back to where he was or to begin criminalising myself by importing his medicine from abroad where it is much cheaper has been made.

My final shred of hope is that Matt Hancock chooses to adopt the recommendation in the NHS England report of immediate observational trials. But deep down I know that our fight has not been won. We will keep fighting, and we will not let Eddie go without his medication. But I will not pretend that our beautiful boy has not been failed by the very measures ostensibly put into place to help him.