15/11/2025
Joanne and her son Ben have campaigned against the unjust NHS system that will not prescribe Cannabinoid medicines for her son and other children. It is unjust.
Misuse of a Successful NHS Appeal: Our Story
In 2019, we followed NHS England’s official guidance. They told families like ours that the correct route to access cannabis-based medicines was through an Individual Funding Request (IFR).
We submitted our IFR in good faith.
In 2021, after a long fight, our son Ben’ IFR appeal was successful. The NHS admitted the original refusal may not have been reasonable. They cited Ben’s exceptional clinical response to Bedrolite and Bedica, the cost-benefit to the local health economy, and the clear improvements in his condition.
But instead of opening access for others, our case was used to justify further refusals.
Internal NHS England communications from November 2021 show our case was discussed at national level. Officials described us as part of a “cohort” of families. Their coordinated response was not to expand access, but to standardise refusals and manage expectations.
They declared the IFR process “not appropriate” for unlicensed cannabis products. This, despite having just accepted the same medicines under appeal.
A child from Cheshire was refused the same treatment by the same IFR team that processed Ben’s case. The refusal letter used identical language: “Prescribing medical cannabis is a decision for specialist doctors… not appropriate for consideration via the IFR decision-making process.”
Our success became their reason to say no.
Meanwhile, in 2020, the Prime Minister personally congratulated a mother in Northern Ireland for securing a “first-of-its-kind” NHS care plan for her child’s epilepsy. That family received political support and bespoke access. Others were left to self-fund or risk criminalisation for importing medicine.
This is a two-tier system. It’s not just unfair. It’s structural impunity.
We urge Parliament, the ACMD, and NHS England to:
1. Investigate how successful IFR outcomes are being misused to justify systemic refusals
2. Restore transparency and equity in IFR decision-making
3. Recognise real-world evidence and lived experience as valid grounds for funding
4. Ensure precedent-setting cases expand access, not restrict it
Families followed the rules. We were told to go through IFR. We did. And then we were punished for it.
This is not just a policy failure. It is a betrayal of trust.
Help us by sign our open letter in the first comment for a public inquiry and confirm in your email.