Parents welcome cannabis review
Families are living in hope that a change in the laws regarding use of cannabis for medicinal purposes can bring much-needed relief to their youngsters. David Williamson reports
HOME Secretary Sajid Javid has announced a review of the medical use of cannabis in the wake of mounting concern about the impact of the current law on children struggling with desperate conditions.
Parliament was told of the plight of two children in the Swansea area who can suffer scores of seizures in a single day due to an exceptionally rare condition.
Megan Webster, 28, is adamant that her one-year-old son, Jace Newton-Sealey, should not be denied a cannabis-based treatment if this would relieve his suffering.
She urged politicians to give the green-light to new treatments, saying: “What would they do if their kids or their family members were in the same place? They would want to try everything.”
Emma Jones, mother of Charlie, six, described seeing him suffer multiple seizures as the “most horrendous thing to watch”.
She said: “Anything that improves Charlie’s life, I’m willing to fight for it.”
The boys’ situation was raised in the Commons by Gower MP Tonia Antoniazzi. Newport West Labour MP Paul Flynn has introduced a Bill to legalise cannabis for medical use.
Mr Javid said it was clear the legal position on medicinal cannabis was “not satisfactory for the parents, not satisfactory for the doctors, and not satisfactory for me”.
HOME Secretary Sajid Javid has announced a review of the medicinal use of cannabis which could lead to patients in the UK being prescribed drugs derived from the banned plant.
Mr Javid announced the move in a statement to the House of Commons in the wake of a series of appeals from parents who want their children to be able to access medications which can alleviate epilepsy and other illnesses.
The Home Secretary announced that he had authorised a licence to be issued on Tuesday for six-year-old Alfie Dingley, after his mother said she had been waiting three months for Prime Minister Theresa May to fulfil a personal assurance that he would be allowed to receive cannabis oil.
Speaking to the House of Commons, Mr Javid stressed that the class B drug would remain banned for recreational use.
Mr Javid told MPs that the review would be held in two parts. The first, led by chief medical officer Sally Davies, will make recommendations on which cannabis-based medicines might offer patients real medical and therapeutic benefits.
The Advisory Council on the Misuse of Drugs will consider in the second part of the review whether changes should be made to the classification of these products on an assessment of “the balance of harms and public health needs”.
“If the review identifies significant medical benefits, then we do intend to reschedule,” Mr Javid told MPs.
“We have seen in recent months that there is a pressing need to allow those who might benefit from cannabis-based medicines to access them.”
Mr Javid said that since becoming Home Secretary in April, it had become clear to him that the current legal position on medicinal cannabis was “not satisfactory for the parents, not satisfactory for the doctors, and not satisfactory for me”.
But he insisted: “This step is in no way a first step to the legalisation of cannabis for recreational use.
“This Government has absolutely no plans to legalise cannabis and the penalties for unauthorised supply and possession will remain unchanged.”
Alfie’s mother said she had been “overwhelmed” by the Home Secretary’s announcement and voiced hope it would be easier to access to get cannabis medication in the future, saying it would be “madness” for sufferers to miss out.
Hannah Deacon said she also wanted the Government to make it easier to do research into the medical properties of the plant, saying: “Hopefully we will have a more forward thinking way of doing things in this country and medicinal cannabis will hopefully, in five or 10 years time, be the norm.
“That is what I would want, because I would not want any other child to go through what my son has.”
The announcement of the review came just days after Mr Javid intervened to permit the use of cannabis oil to treat severely epileptic 12-yearold Billy Caldwell, who had been admitted to hospital with seizures after supplies his mother had brought from Canada were confiscated at Heathrow.
Billy’s mother Charlotte described it as “amazing news” which she “applauded”.
She said: “Today, a few moments ago in the House of Commons, the government commissioned a full review of medicinal cannabis.
“While clearly largely positive, we still want to hear the detail from the mouths of the Home Secretary and the Health Secretary who was sitting next to him when he made the statement.
“At every stage of this campaign we have mentioned making history and we have mentioned it because it is commonsense.
“The power of the mothers and fathers of sick children has bust the political process wide open and it is on the verge of changing thousands of lives by bringing cannabis laws in line with many other countries.
“We are on the threshold of the next chapter of the history book.”
Ms Caldwell said she wanted to meet with both the Home and Health Secretaries.
She said that in contrast to a week ago when she was still fighting for Billy to be treated with medicinal cannabis, a new meeting would be to “thank them for seeing and hearing sense and joining us in creating history in the United Kingdom.”
Billy’s case provoked widespread calls for a change in the law, with former Conservative leader Lord Hague urging ministers to consider full legalisation of the drug.
Writing in the Daily Telegraph, the Conservative peer - who led the party from 1997-2001 and was foreign secretary from 2010-14 - said the war on cannabis had been “comprehensively and irreversibly lost” and it was time to consider legalising the substance for recreational as well as medicinal use.
But he was swiftly slapped down by the Home Office, which said: “Any debate within government about the medicinal and therapeutic benefits of cannabis-based medicines does not extend to any review regarding the classification of cannabis and the penalties for the illicit possession, cultivation and trafficking of cannabis will remain the same.”
Mr Javid told MPs he had the “utmost sympathy” for the families of children like Billy and Alfie, who have travelled abroad to obtain cannabis-based treatments banned in the UK.
“As a father, I know there is nothing worse than seeing your child suffer,” he said. “You would do anything to take away their pain.
“That is why I have the utmost sympathy for Billy Caldwell, Alfie Dingley and many others like them and for their parents, who have been under unimaginable stress and strain.
“I know that they are following a gut parental instinct to do whatever is in their power to try to alleviate the suffering of their child.
“I will do everything in my power to make sure that we have a system that works, so that these children and these parents can get access to the best possible medical treatment.”
In his Telegraph article, Lord Hague said the case of Billy Caldwell had shown the law around cannabis to be “inappropriate, ineffective and utterly out of date”.
Licensing medicinal cannabis would be a step forward, but the Government should also consider legalising the drug, as Canada is on the verge of doing, he said.
HOPES are rising that two Welsh children who suffer from an exceptionally rare condition that causes regular seizures will soon get the chance to receive a cannabis-based treatment.
Home Secretary Sajid Javid has announced a review of the medicinal use of cannabis after days of mounting concern that children and adults in the UK are being denied access to treatments which could deliver real benefits.
Two Welsh mums whose sons suffer from Nonketotic Hyperglycinemia (NKH) – a condition that can causes scores of seizures in a single day – want the opportunity to see if such a treatment might help their children.
Megan Webster, 28, from Swansea, described her determination that her one-year-old son, Jace Newton-Sealey, should not miss out on anything that could relieve his symptoms.
Explaining her son’s condition, she said: “Jace was born without the enzymes that break down the amino acid glycine that we need for brain function. Because he doesn’t have the enzyme, the glycine rises and causes damage to his brain and his organs.”
She had a simple message for politicians as to why they should give the green-light for cannabisbased medicine: “What would they do if their kids or their family members were in the same place? They would want to try everything.
“Even if it doesn’t work, it’s knowing that you tried this and you tried everything you can. They just need to be more openminded about it.”
Ms Webster, who raises Jace with his dad, Chris Newton-Sealey, set out her son’s plight, saying: “He just turned one in April and he’s still not able to lift his head. It’s only in the past two months he’s started crying again; he’s only recently started smiling. “It is really hard.”
Emma Jones and her husband Kerry, both 44, and from Swansea, are the parents of Charlie, now aged six.
She said: “I just want him to have the chance to try the real deal and if it works, great. And if it doesn’t work, it doesn’t work – but I can honestly say that I’ve tried everything.
“Anything that improves Charlie’s life, I’m willing to fight for it.”
She described seeing him suffer multiple seizures as the “most horrendous thing to watch”.
And while she acknowledges that a cannabis-based treatment “might not work”, she does not want the door shut on this approach.
“It would just be nice to be given the option to try it,” she said. “That’s all we want, really.
“That would be great, so that he has the same opportunities that other children have had.”
Her dad, Ian Gilmore, has pressed to win permission for a cannabis-based treatment for his grandson.
He said: “I’ve been trying for four years... I’m just getting stonewalled. Nobody will make a decision. It is frustrating.”
For Mr Gilmore, who worked in the RAF for 23 years and was a civil servant in the Land Registry for 20, this is a matter of justice.
He said: “It’s just not fair when something could stop the seizures. It’s awful to see him when he’s having these cluster seizures, it’s dreadful...
“I’m not asking the NHS to pay a penny. I’ll travel to the Netherlands, I will pay the company, and I will if necessary give it to a doctor to administer it or a nurse in the surgery...
“All I want is a month’s supply to see if it will benefit Charlie. That’s all I want but I’m not holding my breath that I’m going to get the licence.”
He urged the UK Government ministers to give the thumbs-up to cannabis-based treatment, saying: “The evidence is there. Use the evidence.
“Go to Canada. Speak to your opposite number in the Canadian Government. Why wait another six months or another year?”
Gower Labour MP Tonia Antoniazzi rasied the cases of Jace and Charlie in the House of Commons this week. They are two of just 15 children in the UK, she understands, with the condition.
She said: “They have defied the odds and they both deserve to have a quality of life. They have excellent support from the NHS, it’s just that medicinal cannabis would help them more.”
Adamant this “could be sorted out very quickly,” she said: “We have enough evidence. Each of the 650 Members of Parliament will have somebody in their constituency that would benefit from the use of medicinal cannabis.
“I would love to see the consultant neurologist be able to prescribe medicinal cannabis, not just for those two children with NKH, but to all children and adults that need it.”
A Private Member’s Bill introduced by Newport West Labour MP Paul Flynn to legalise cannabis for medical purposes will have its second reading on July 6.
Sensing that change is on the way, he said: “There’s been a huge change in the opinions of Members of Parliament for a start. I believe the walls of prejudice are collapsing.
“In so many parts of the world they have decriminalised, reformed their laws, and in every case they’ve been huge successes. We can’t just carry on with the harshest laws in Europe and the worst results in Europe.”
Tina Donnelly, director of the Royal College of Nursing in Wales, argued that it should be possible to prescribe cannabis.
She said: “Any drug that is a Class B drug, which is what this is, should be available on prescription – which means that there is a medical diagnosis and a prescription to enable people [to] benefit from the relief it may bring in certain conditions.”
Plaid Cymru leader Leanne Wood said: “A mature and measured public debate on the use of cannabis and its legal status is long overdue. The arguments for medicinal use are irrefutable.
“Plaid Cymru favours decriminalisation. More broadly, we want Wales to have the powers to be able to set its own policies when it comes to drugs classification, as part of creating a distinct Welsh legal system.”
A Welsh Government spokesman said: “The legal classification of drugs remains the responsibility of the UK Government and we believe classification should be considered on a UKwide basis. The safest way to access the medically active chemicals in cannabis is in a licensed medicine which has gone through a rigorous quality control process.
“Cannabis derivatives can play a role in treating some medical conditions. We look forward to examining the findings of the review of the medical benefits of cannabis announced today.”
Home Secretary Mr Javid said it had become clear to him that the legal position on medicinal cannabis was “not satisfactory for the parents, not satisfactory for the doctors, and not satisfactory for me”.