'Chronic pain sufferers are furious': Vera Twomey reacts to cannabis access programme

"This is a step forward and I am pleased. However, the absence of chronic pain sufferers within the conditions covered is unacceptable.

"These people cannot be abandoned. There are thousands of people suffering with chronic pain. They should be on the list.

Chronic pain sufferers are furious. And I can understand that.

Ms Twomey described the signing of the compassionate access programme in to law as a "breakthrough." However, she said numerous vital details will need to be ironed out in the coming weeks and months.

"There is no detail of the product yet. And that will be important. My daughter [Ava] went through eight years of seizures before we found the right product to help her.

"Nobody should have to change the medication they are using successfully to suit the bureaucratic ineptitude of the Government. There is so much [about the programme] that we are not aware of yet."

Vera travelled to the Hague to receive medicinal cannabis for her daughter Ava (9) and was based there for a period. After campaigning for a period she returned home to Aghabullogue, Co Cork with a licence.

Ms Twomey rose to national prominence during a three-year campaign to secure access to medicinal cannabis to treat Ava’s rare form of epilepsy, called Dravet Syndrome. The condition has previously pushed Ava into cardiac arrest and an eight-day coma.

Her campaigning included two 260-kilometre walks from Cork to the Dáil to capture the government’s attention to Ava’s struggle. She also mounted a very successful social media campaign.

Further to securing the right for Ava to receive medicinal cannabis, Ms Twomey also successfully lobbied the government to include the cost of Ava’s €12,000 a year treatment under its long-term illness scheme.

Vera and her husband Paul had been paying for Ava’s treatment out of their own money, alongside donations raised through a GoFundMe page.