Before I took the decision to try treating my daughter Indie with medicinal cannabis she was on a trial of a “traditional” pharmaceutical drug. My four-year-old has Dravet syndrome, a severe form of epilepsy. It was the eighth different drug that we had tried, none of which had reduced her seizures. We refer to the trial as Indie’s “zombie phase”. For those five harrowing months, Indie spent every waking moment laid on the floor, distressed and “body-rocking”. She would have periods of insomnia lasting up to 40 hours. The stress and worry were indescribable. Our doctors insisted it was the condition causing these symptoms, not the medication. But as a family we had reached our limit. I’d been researching medicinal cannabis over a three-year period, so earlier this year we uprooted our family to Holland.

Indie was treated with a particular type of cannabis oil (CBD oil) that did not contain the psychoactive component THC. The results were striking. Her seizures reduced significantly. We had every intention of staying abroad and extending the medicinal cannabis trial to encompass cannabis oil containing small amounts of THC. Results from other families suggested that the addition of this THC offered the promise of even more dramatic reductions in seizures. But with funds running low, we were forced to return to the UK.

Local medical teams don’t have the expertise as medicinal cannabis has been illegal in the UK

So imagine our joy when the high-profile campaigns over the summer by Billy Caldwell’s mother and other families prompted the home secretary, Sajid Javid, to announce a massive shift in government policy. Of particular importance to us was the establishment of the new expert panel to look at cases like ours. Our hopes were raised.

We have applied to the panel on behalf of our daughter to be prescribed cannabis-based medicines, with the support of the End Our Pain campaign group. We await its decision. However, there is an emerging picture of the new panel failing to deliver for patients. Local medical teams and their governing trusts seem reluctant in the extreme to even apply to the panel. And in the rare circumstances that an application is made, the terms of reference are so restrictive that many seem to fail, although the government is not able to confirm the actual number of applications it has received as the number is so small. Trusts also seem fearful of some perceived possibility of extra liabilities. And the terms of reference of the panel say that any application must come from the local medical team, that all other treatments must have been exhausted and that particular emphasis will be given to families who have travelled abroad. But local medical teams don’t have the expertise as medicinal cannabis has been illegal in the UK. And the stipulation that all other treatments must have been exhausted implies medicinal cannabis can only ever be a last resort. And the panel’s emphasis on asking for evidence that it works for the patient is grossly unfair. Only families with the financial means to travel abroad can secure such evidence.

These terms of reference need urgent review. National and international experts should be allowed to apply on patients’ behalf, medicinal cannabis shouldn’t be restricted to “last resort” status and the panel should consider evidence from similar cases rather than rely on evidence obtained by stressful and costly trips abroad.

Our little girl can now go to school and play with friends. But unlike for most families, this doesn’t give us respite. Instead I spend the hours that Indie is at school waiting in local car parks, so I can be on standby to administer her next dose of the remaining CBD oil that I managed to bring back from Holland. Because it is an unlicensed product, her school cannot administer it. And we are having to fund the oil, too. Only a successful outcome from our application to the panel can end this stress.

In the long term, we need a regime that will allow GPs to prescribe medicinal cannabis. And in the short term, we pray and beg that the panel finds in our favour.

• Tannine Clarry is a mother from Suffolk