4 November 2018

Cannabis Based Medicine Products (CBMP) have been made legal in the UK this past Thursday. Families 4 Access, its team, and advocating families alike, were all hopeful and counting the days down until the 1st of November, the day the nations patients had been waiting for - 6.7 million of them, at least.

As we scramble to find the time to read the Interim Guidelines released to advise prescribers less than 12 hours before the clock hit midnight, followed by the responses of media and parents, whilst our inboxes filled with messages from the general public to Members of Parliament, and our phones ping with twitter and facebook messages of children still awaiting their medicine - we feel its appropriate that we share our brief thoughts. It is Sunday eve, 3 days post a long awaited legislation change and this is where we really are. 

On the one hand, it can be asserted that we have been met with a milestone in progress. It is no longer criminal, nor prohibited that specialists prescribe the use of CBMP’s. So effectively, pragmatically speaking, this suggests that we will begin to see pioneer medical practitioners trailblazing, whilst others no longer feel they risk their license as they begin to outsource existing research to guide their professional development and practice. 

On the other hand, it must be equally acknowledged that those parents battling for access to life-saving medication for their children, alongside nearly 7 million adult patients, feel incredibly let down as rhetoric to have access was so strong from Home Office, and responses to the publics’ FAQ’s remain ambiguous. 

So a utilitarian perspective may be applied to observe some facts. We are being flooded with outcry. The guidelines are restrictive. There are children in critical life-threatening condition and families still announcing that they are denied what has been promised. There are parents fleeing the country to source what is not available here. We have a new legislation, which isn’t currently being supported by any systems in place. 

Undeniably, we are at a vulnerable state here and there is an urgent call for action. Many patients do not have the luxury of time.

Ultimately as a campaign advocating for access to CBMP’s, alongside 100 families, our mission for what we stand has not been accomplished but we have stepped forward. There is a need, now, to implement what medical practitioners respond to best, and perhaps this entails trials with peer transcontinental support.

Our work isn’t over until families have access to the medicine they need. Effectively, one might say that our work has only just begun. 

Basia Zieniewicz, Families 4 Access

See link for advice to patients here.