LETTER TO HOME SECRETARY FROM FAMILIES 4 ACCESS, 4 JULY 2018


The Rt Hon Sajid Javid MP

Home Secretary

Direct Communications Unit

2 Marsham Street

London, SW1P

 

4 July 2018

 

Dear Home Secretary,

I am writing on behalf of Families 4 Access (F4A), a campaign group representing many families who hope to gain access to life changing medicinal cannabis for their sick children.

You are aware of the most high-profile family that we represent, Charlotte Caldwell and her son Billy. This case is nearing conclusion, thanks to your swift intervention. However, there are many other families who are still waiting and in desperate need of medicine.

While we are forever grateful for this decisive action, we must share the concerns of families who are still looking to access cannabis based medicines. As might be expected in such circumstances, emotions are running high. There is great deal of excitement and frustration in equal measure, largely influenced by the experiences of those families who have already entered or tried to enter the assessment process.

Families who have been welcomed into the process by knowledgeable clinicians are, of course, feeling extremely positive. However, there are many others who are feeling immensely frustrated.

It is important that we bring to your attention those frustrations as they may well be a significant benchmark in terms of how the whole process is viewed and accepted, and, indeed, an indication of the level of credibility not just relating to the process, but also the Government.

 Here are the key issues we discovered:

  1. There is no consistency when it comes to clinicians' understanding of the process. The results vary from family to family, from clinician to clinician.
  2. Some clinicians still believe that it is outside the law to consider patients for medicinal cannabis. This is despite some patients showing them or sending them links to the Government website. Families are being turned away by ill-informed doctors and consultants.
  3. There is an obvious confusion amongst clinicians as to what type of medicinal cannabis can be prescribed. Clinicians do not understand the differences between CBD and THC based medicinal cannabis.
  4. Royal Colleges are either stating they have no guidelines for treatment involving medicinal cannabis, or are seeking clarification. One professional body, the British Paediatric Neurology Association (BPNA), says that there is no evidence of therapeutic value of medicinal cannabis containing THC in treating epilepsy, statement link below. This is contrary to Dame Sally Davies' review findings.

Based on the families' and clinicians' frustrations and observations, we would recommend the following:

  1. As a matter of urgency, clear guidelines must be provided to the Royal Colleges and professional bodies. Training should be sourced and offered, if necessary.
  2. An all-encompassing, definitive state-of-play statement and directive is produced by the Home Office, explaining in plain language that patients can now enter into the assessment process, and that they should be welcomed into it by their doctors and consultants. This needs distribution to doctors and clinicians as guideline, as well as given to families for their reassurance.
  3. Future-proofing of the process, i.e., introduction and development of experts and expertise be brought to bear in anticipation of a likely considerable demand for access to the assessment process.

If we can be of any assistance by sharing the experience we have amassed to date, then we remain at your disposal.

Yours sincerely,

Marina Kim on behalf of Families 4 Access

 

British Paediatric Neurology Association (BPNA) statement link

 

BASIA ZIENIEWICZ