Couple 'spend thousands' on medicinal cannabis for one-year-old with epilepsy

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A couple from Frome whose daughter has severe epilepsy have spent thousands of pounds on medicinal cannabis because they cannot access it on the NHS.

Emily Howis and Spencer Carkeet are now campaigning to make the treatment more readily available.

Their daughter Clover has severe epilepsy which meant she would sometimes have more than 100 seizures a week.

Credit: Emily Howis

The family struggled to find the right treatment for her, but say medicinal cannabis prescribed through a private clinician has changed the one-year-old's life.

She has her seizures in clusters so in the summer when things were at their worst she was having around 30 clusters a week which equates to hundreds of seizures a week.

Emily Howlis

They say she’s now down to between one and three seizures a week but it's an expensive process.

Emily said: "At the moment it's in excess of £700 a month. It changes all the time because we're constantly tweaking her dose to find the best seizure control for her. But that will get more and more and more as she gets bigger."

In 2018, the law around medicinal cannabis products changed, allowing doctors to prescribe them under certain circumstances. But the number of NHS prescriptions is low.

Emily and Spencer have joined a campaign to get easier access to the medication on the NHS.

Credit: Emily Howis

Louise Collins, from Epilepsy Action, believes this treatment should be easier to access.

She told ITV News West Country: "We are talking about children that have very severe and sometimes life-limiting epilepsy for which no other treatment options exist at the moment.

"What they're telling us is that when these medicines they're seeing huge reductions in seizures for their children, and these are children that might be having hundreds of seizures a day or a week - they're seeing these vastly reduced."

Credit: Emily Howis

What the Department of Health says

In a statement the Department of Health and Social Care said: "We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is rightly one for clinicians to make.

"Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear evidence of their safety, clinical and cost effectiveness.

"However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines."