GUIDELINES FEAR 

Vera Twomey has to travel from Cork to the Netherlands every three months to get medicine for her eight-year-old daughter Ava, who suffers from a severe form of epilepsy

CANNABIS-based medicinal products are now available in the North.

As of Thursday, specialist doctors can prescribe weed-based medicines to patients with an ‘unmet clinical need’.

Mum Vera Twomey with Ava at their home in Co Cork

The law change comes after a series of high-profile cases, including that of 12-year-old Co Tyrone boy Billy Caldwell, whose severe epilepsy appeared to be helped by cannabis oil.

But the new guidelines, published the same day pot meds became legal, have raised fears only a small number of patients will benefit as the medication available will be limited.

So far, only products containing cannabidiol (CBD) will be available, while medicine containing more than 0.2 per cent THC (tetrahydrocannabinol) — the psychoactive element — is still banned.

And many families in the North and the rest of the UK feel they have been let down as a result.

GETTY – CONTRIBUTOR
Patients with an ‘unmet clinical need’ will soon be able to access weed-based medicines in Northern Ireland

Prominent medicinal cannabis campaigner in Ireland, Vera Twomey, says she would be “terrified” if the same guidelines were introduced in Ireland.

Vera has to travel from Cork to the Netherlands every three months to get medicine for her eight-year-old daughter Ava, who suffers from a severe form of epilepsy called Dravet syndrome.

They are one of just ten families in ­Ireland who were granted a special license to access cannabis-based medicinal products.

Here Vera speaks to our reporter NIAMH ANDERSON. 

PA:PRESS ASSOCIATION/PA IMAGES
Billy Caldwell’s mother Charlotte campaigned for the use of cannabis oil

THERE are patients out there who need both CBD and THC medication, so if the government in Northern Ireland is providing ­families with only half the necessary medication that’s actually quite frightening.

If we follow suit with what’s happening in the UK, nobody will be able to access THC and that is not a progressive programme.

At the moment, Ava is on her CBD and THC and that’s all she needs, but we are still travelling to Europe every three months to get her medication.

As well as that, we are having to reapply for our license every three months.

ALAMY
The new legislation is not enough for some patients

When you see progress like this, and I use that word loosely, it’s very concerning because our daughter needs THC as much as she needs CBD, so to see a neighbouring country where they’re not acknowledging the benefits of THC is very frightening.

If her THC was taken away from her, Ava’s seizure control would be taken away as well.

I would hope that there would be some kind of sense in this country that a system as restrictive as the one in the UK is barbaric.

You need to be unsuitable for brain surgery in the UK before they will consider prescribing you with medical cannabis and that is not what we should be looking to. I would be terrified that the same rules would come into Ireland.

GETTY – CONTRIBUTOR
Some medicinal uses for cannabis oil will soon be legal in Northern Ireland

As for our own fight for medicinal cannabis to be legalised, I think the way forward is pretty clear.

You educate your consultants and GPs, you choose a selection of the finest medical cannabis products available within the EU and then you prescribe them to as great a degree as any other medication is prescribed. Not more.

Medical cannabis is a medicine, it shouldn’t be treated any differently from any other form of medication. But at the moment, there’s an inability to grasp a new idea.

There’s an inability to grasp that cannabis is medication and the people making the decisions in the Dail are holding on to old ideas.

FACEBOOK
Vera and Ava Twomey

They’re holding on to the stigma, without carefully looking into it in a balanced way.

Some of the adults above in the Dail need to make a decision to find a supplier, and finally allow patients access to this medication.

For now our daughter is safe, but what about everybody else? This issue is not going to go away, people’s suffering isn’t going away.

It’ll be two years in February since we did our walk from Cork to Leinster House to highlight Ava’s case. My daughter is safe but is it necessary for every woman with a seriously ill child to leave her home and walk 200 miles, or would Simon Harris prefer us to walk 5000 miles?

How far do we need to go before the penny drops?

I told Simon Harris this — it would be a wonderful legacy for him to legislate medical cannabis for the people of Ireland and I don’t understand why they don’t see this.

So then it begs the question, who or what is blocking this? I don’t know the answer to that.

Thankfully we have no worries when we’re travelling to and from Cork Airport to Holland because we have the license but we shouldn’t be in a position where we have to do this.

LEAVE A REPLY

Please enter your comment!
Please enter your name here