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The mother of a little girl with a severe form of epilepsy says a change in legislation on medicinal cannabis was brought in too quickly with no education.
Emma Appleby from Aylesham has been campaigning to get the drug for Teagan who used to suffer hundreds of seizures every day.
Despite a change in the law being passed last November, she still does not have an NHS prescription and has twice been stopped while returning to Britain after travelling to Holland to get the drug privately.
Miss Appleby, of Milner Crescent, has spoken out as a report by a group of MPs says the change in legislation unfairly raised patients' hopes because it has been so badly communicated.
The Health and Social Care Committee say many patients are angry they still can not access it and doctors are having to deal with the backlash.
Emma said: "I think the problem was the law was changed very quickly and there was no education given.
"All of a sudden the November, 1 arrives and nobody knew anything about it, nobody had any stock - it was all very quick but no planning behind it really."
Today's report calls for trials into the treatment of childhood epilepsy to be 'facilitated as a matter of urgency', something Emma welcomes, she added: "It is basically lack of information, lack of education.
"It is a new drug, but it's proven in some cases that it helps. Teagen it definitely helps - she's gone down from 300 seizures a day to a maxium of about 10.
"From 300 to 10 is a massive improvement and not just seizures, but her quality of life has dramitically improved as well.
"There's other children in the country that are using the medication - some of them are seizure free completely. This is our evidence. These children are either seizure-free or have had a massive reduction in seizures."
The report's authors admit they are concerned that some pharmaceutical companies are still resistant to making their products available for research.
KMTV reported on Emma and Teagan back in December shortly after the legislation changed
Dr Sarah Wollaston MP, Chair of the Health and Social Care Committee, said: "Although the recent changes to Government policy were welcomed, there was a failure to communicate what this would mean in practice for the availability of medicinal cannabis.
"Expectations were unfairly raised that these products would become widely and readily available, and there needs to be far clearer communication that this is not the case.
"However, recent changes to the scheduling do make it easier to conduct robust research into medicinal cannabis, which would build a stronger evidence base so that patients can weigh up any risks and benefits of treatment. At present there are too many gaps in the evidence to allow most forms of medicinal cannabis to be licensed for use and approved by NICE. We welcome the calls for research proposals from the NIHR and we recommend that intractable childhood epilepsy should be a priority."
