The mum of a desperately ill boy says his life rests in the hands of Northern Ireland Health Minister Robin Swann.
Billy Caldwell, 15, has seven days left of the medicinal cannabis that ensured he has been seizure free months.
The Castlederg, Co Tyrone teenager suffers from a severe form of epilepsy that caused up to 300 seizures a day at its worst.
His mother Charlotte has written an open letter to UK Health Secretary Matt Hancock and Robin Swann calling on them to "restore Billy’s prescription and care plan".
She told Belfast Live: "I want to say a huge heartfelt thanks to Professor Helen Cross, Billy's private treating physician and Billy's GP. When I reached out to them they picked my little boy up and wrapped their arms around him.
"They have, with the help of Aurora Canada, kept Billy alive. They are selfless, ethical and compassionate. They have given me back my right as a mummy to hope but most importantly, they have given Billy back his right to life."
Her letter reads:
Open Letter from Charlotte Caldwell
5 September 2020
Dear Rt Hon Matt Hancock MP and Minister Robin Swann
I am writing to you today to appeal for your help. I am writing to you today as a mother and on behalf of a severely ill young boy, my son Billy.
But just so we are clear, I am writing to you not just in your role as Ministers of the Crown. I am appealing to you as politicians, and I am also pleading with you both as parents.
Next Monday, one week from today, the prescription for the medicine first prescribed to Billy almost two years ago runs out. You will know it is no ordinary medicine. It may be unlicensed and is not approved by NICE, but it has had an extraordinary impact on my son’s life, as numerous doctors have attested.
Right now, you are the only two people in the country who can ensure he has access to it after next week.
Billy’s future wellbeing is now in your hands.
Secretary of State, you created RESCAS to deal with children with complex conditions such as Billy’s. I applaud you for allowing the most eminent paediatric neurologists to convene to consider such cases. It would have been inconceivable only two years ago.
In July, when I belatedly became aware of its existence Billy's case was referred to RESCAS. I was so relieved, but unsurprised, when they concluded that his medicine should continue.
One month after receiving the report I still have not received indication that anyone inside the government in Northern Ireland has done anything at all to implement its recommendation.
The RESCAS recommendation should have elicited an urgent response. What is the point of initiating a panel such as this, then receiving its clear recommendation and doing nothing to implement it?
Minister Swann, you know Billy.
You were kind enough to meet us when you attended a cross-party delegation meeting to discuss medical cannabis last year. That day as a parent - the Assembly was suspended at the time - you pledged your full support to assist us.
Now as Health Minister you can and you must.
For reasons only you will know, clinicians in Northern Ireland were only notified of the existence of RESCAS in July, five months after it was communicated to doctors in England, Scotland and Wales.
I can’t afford you any further opportunities to delay things now.
Last week, I terminated a long tortuous and costly legal challenge because I have in my hands a piece of paper that states that my son's medicine should be continued. It is a recommendation signed off by the best qualified clinicians to make such a judgement.
There was never any moral reason why the NHS withheld funding from Billy, now no legal or clinical barriers exist.
Not once in the last 18 months since I returned to the UK have I ever felt that those with responsibility for Billy’s care have ever done anything to make appropriate arrangements for him. But that changed with the RESCAS report.
I don’t need lawyers now and you can’t prevaricate behind legalese.
You have one week to do what is required of you. One week to restore Billy’s prescription and care plan.
I await your urgent attentive response as politicians and as parents.
Regards
Charlotte Caldwell
