FAMILIES 4 ACCESS ON BECOMING A REGISTERED STAKEHOLDER WITH NICE

October 15, 2018

The Department of Health and Social Care have commissioned the National Institute of Health and Care Excellence (NICE) to help establish the guidelines for medicinal cannabis in the UK, to be published by October 2019.

Last week Families 4 Access has had the honour to become a registered stakeholder with this world-renown organisation. We could not have come this far without the continued brave advocacy of the families whom this campaign represents. For this we would like to thank you.

Families 4 Access will require your ongoing support, to follow through with our commitment, over the next 12 months so we can accurately represent your experiences and needs. This will be our role.

For full details of developing NICE guidelines, see the complete outline of NICE Process and Methods Guide. Below we aim to highlight some key points from this document.  


Who are these guidelines written for?

The recommendations in NICE guidelines are usually for people working in the NHS, local authorities, and local and national organisations in the private and voluntary sectors.

What processes and methods will NICE use to write these guidelines?

  • Based on methods that are recognised worldwide.

  • Based on the best available evidence. Experts from the NHS, social care, local authorities and others in the public, private and voluntary sectors work with people who use health and care services, and representatives of communities affected by the guideline, to develop recommendations for good practice.

  • NICE take account of ethical and moral issues.

  • Consider equality issues such as socioeconomic status, looked-after children, homeless, vulnerable and at risk people.

NICE guidelines are developed by several groups working together. Families 4 Access will be considered a Public Stakeholder, whereby as a community organisation, we represent the interests of people whose health or care is covered by the guidelines. We may come to you with calls for evidence as it may be required to discuss information on how a condition and your situation affects your lives.

We are at critical stage in a historical moment in time, now in the process whereby, as a campaign, we have a real opportunity to help shape guidelines for medicinal cannabis collectively by amplifying families voices to global experts in setting the national standards.

When asked what this means for us, Saoirse O'Sullivan, PhD, a prominent cannabinoid researcher and Associate Professor at The University of Nottingham said “I am delighted to see that Families 4 Access is a confirmed registered stakeholder in the Cannabis-derived products for medicinal use NICE guideline committee.  It is crucial that in the review of evidence of the benefits of cannabis-based medicines, that NICE also consider the patient's perspective, especially in some indications where the clinical evidence through traditional routes is lacking. Hearing the testimony of patients and carers using cannabis-based medicines will help to realise how life-changing these therapies can be for some families.”

Families 4 Access is still accepting families to join the advocacy campaign. If you know someone, or have a loved one who’s voice must be heard, contact us directly on info@families4access.com.

We cordially welcome you to share your story, and thank you again for your continued support.

Families 4 Access Team

BASIA ZIENIEWICZ