3 min read
Government must urgently establish an emergency compassionate access fund so that families can continue to access medical cannabis through the NHS.
On 1 November 2018, access to medical cannabis was made legal in the UK. This promised to be a landmark moment for patients across the country with conditions for which medical cannabis has shown efficacy.
One particular patient cohort with a high degree of interest in medical cannabis was, and is, the children affected by severe drug resistant epilepsy. After all, this law change came about after high profile campaigning by me and fellow parliamentarians along with those families whose lives had been transformed by medical cannabis.
But nearly three years on, what should have been a watershed moment has resulted in very little change for these affected families. It is to be deeply regretted that, by all accounts, only three NHS prescriptions have been issued across our country for the type of medical cannabis that is life transforming for the children affected. And so, notwithstanding that law change which I successfully campaigned for, families continue to be forced to pay up to £2500 a month to buy on a private prescription that desperately needed medical cannabis medicine for their severely ill children. This is not acceptable.
The grim reality is that there is a serious risk of some of these families running out of funds and therefore medicine within weeks
In my own South Leicestershire constituency, I have been working closely with two families who each have a child suffering from a rare form of epilepsy. They are campaigning under the ‘End Our Pain’ banner for an NHS prescription. Like many hundreds of families across our country, their situation is heart breaking. They, along with the other End Our Pain families, simply cannot afford to pay thousands a month just to keep their children safe. Their efforts to fundraise this money have also been curbed by Covid-19 restrictions, increasing the financial pressure and worry still further.
It is not an exaggeration to say that these families have reached financial and emotional breaking point. The grim reality is that there is a serious risk of some of these families running out of funds and therefore the medicine within weeks, leaving these children to face up to 300 life threatening seizures a day. It is for this reason that I am calling on my colleagues in government and senior NHS leaders to treat this matter as extremely urgent and find a practical solution.
To be clear, the type of medical cannabis that these children benefit from contains two main components: CBD and THC often referred to as “whole plant extract”. There have been a few more NHS prescriptions for types of medical cannabis that are primarily CBD only.
My investigations into why the NHS prescriptions continue to be blocked reveal a mire of often confusing ‘guidance’ from multiple sources interlaced with an NHS bureaucracy and regulatory regime ill-suited to handle the multi active component nature of medical cannabis.
The children involved do not have the luxury of time. It is for this reason that I am calling on the government to establish an emergency compassionate access fund right now so that my constituents and other families can continue to access this legal medicine until the bigger issues relating to NHS access are resolved.
Alberto Costa is the Conservative MP for South Leicestershire and co-chair of the APPG for Access to Medical Cannabis Under Prescription.