The Sunday Post (Inverness)

HELP ME, MINISTER

Dear Home Secretary You offered me hope, promised me a chance to live and watch my son grow up. Did you mean it? If you did, you need to prove it. Please, just prove it.

- By Janet Boyle Jboyle@sundaypost.com

A mum has made an emotional appeal to the Home Secretary after her hopes of being prescribed medicinal cannabis were dashed.

Caroline Burns has written to Sajid Javid after he launched an expert panel to consider approving prescripti­ons of the cannabis-based drugs on a case-by-case basis. Doctors across Britain, however, are not referring patients to the panel. Caroline, whose brain tumour has shrunk by 26% while taking the drugs ordered from abroad, said: “All I am asking for is hope. All I want is a chance.”

Amum fighting a brain tumour has made an emotional appeal to the Home Secretary after her applicatio­n for medicinal cannabis was rejected, despite her belief the drug has helped keep her alive for three years. Caroline Burns asked to be referred to an expert panel launched by Sajid Javid to sanction prescripti­on of the drug in exceptiona­l cases. His landmark announceme­nt, when he also promised specialist doctors would be able to prescribe cannabis oil by the autumn, came in a blaze of publicity after the plight of two young boys, whose severe epilepsy was controlled by the outlawed drug, emerged. But when Caroline, who spends at least £1,000 a month importing medicinal cannabis to treat her tumour, asked doctors to forward her applicatio­n to the expert panel they refused.

Her oncologist­s at Glasgow’s Beatson cancer centre said there was no published evidence of the benefits of cannabis, too many uncertaint­ies over cannabis-based products, and no official guidelines about how it should be taken.

Now she has written to the Home Secretary warning him his scheme is not working.

Her fears are echoed by other patients across Britain who say that applicatio­ns are being refused or obstructed because clinicians and health authoritie­s are unwilling to recommend the use of medicinal cannabis, and because the panel’s criteria are too strict.

Former council worker Caroline, 35, said: “I find myself writing to the Home Secretary pleading for my life. “When the expert panel was announced, it gave me real hope. However, if doctors do not feel able to refer patients to the panel, it means nothing.

“We have been promised medicinal cannabis and when we try to put it into practice we are denied. It’s a sham.

“All I ask is that I am kept alive to see my son Jack grow up.

“If the Home Secretary meant the panel to have any significan­ce, he needs to prove it.”

Doctors warned Caroline she may have only three months to live but she has made remarkable progress since she began taking cannabis, with her tumour shrinking by 26%.

However, the cannabis costs her family between £1,000 and £1,500 a month to buy. Caroline’s dad, Pat O’hara, added: “My daughter has been kept alive for three years after a terminal diagnosis gave her three months.

“There are also medical trials which prove it works.

“But it appears that the doctors do not have guidance on how to use it.” Earlier this month, it emerged that just two applicatio­ns for severely ill children to have medicinal cannabis had been approved since the Home Office licensing system was introduced, with a third approval before the scheme was set up. The Home Office refused to update those figures but a leading oncologist closely involved said he believed it had not changed.

Newcastle neurologis­t Professor Mike Barnes said doctors were reluctant to make referrals to the panel. He added: “Many patients who need it are not able to get their specialist­s to forward proposals.

“It is difficult for people like Caroline, who are pioneers in using medicinal cannabis. “I am launching an academy of medicinal cannabis in November to offer training to doctors.”

In July, Mr Javid said medicinal cannabis should be made available on prescripti­on for the first time after a public outcry over the cases of 13-year-old Billy Caldwell and Alfie Dingley, seven, both of whom needed it to control severe epilepsy.

Alfie’s mother, Hannah Deacon, 39, said the scheme had worked for her son, but she knew of a number of other patients who could not get their doctors to forward their applicatio­ns.

Peter Carroll, director of End Our Pain, a medicinal cannabis campaign group, said it had requested informatio­n on how many patients had been referred to the panel. “The Government told us the numbers were too small,” he said. “They could not say how many in case the patients were easily identified.”

MP Philippa Whitford, a cancer surgeon who is on Westminste­r’s all-party parliament­ary group on cannabis, said: “Scotland and the UK have been instrument­al in research which has brought many drug breakthrou­ghs.

“However, there has been little research into medicinal cannabis in the UK. Other drugs like opiates and other pain killers are available to patients who need them. There is encouragin­g evidence that medicinal cannabis works for some medical conditions.

It’s a sham. All I ask is that I am alive to see my son Jack grow up

“Patients are under tremendous pressure to access it and those who need it should be able to.”

A Home Office spokespers­on said: “We completely sympathise with the families who have been facing desperate situations as they try to find treatment.

“In July the Home Secretary committed to swift action on behalf of those whose medical conditions could potentiall­y be eased by cannabis-based products and we have announced that cannabis-based products for medicinal use will be available for specialist doctors to prescribe legally from the autumn.

“Any proposed course of treatment with cannabis-based medicine must be clinically led,” the spokespers­on added.

Glasgow and Clyde Health Board, which runs the Beatson, said that due to patient confidenti­ality it was unable to comment on patient’s individual cases.

A Scottish Government spokespers­on said: “The expert panel was establishe­d in June to advise UK ministers on medicinal cannabis licence applicatio­ns made by senior clinicians on behalf of patients.

“The decision on whether to make an applicatio­n to the panel is purely one for the treating clinician,” they added.

“However, it is important the NHS in Scotland is involved in the developmen­t of clinical guidelines in this area to support doctors and make sure prescribed products are safe and effective, including for children.”

 ??  ?? Appeal: Caroline
Burns
Appeal: Caroline Burns
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 ??  ?? Hannah Deacon with son Alfie, left, and Caroline Burns, with son Jack and husband Gary, right Main picture: Chris Austin
Hannah Deacon with son Alfie, left, and Caroline Burns, with son Jack and husband Gary, right Main picture: Chris Austin
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 ??  ?? Sajid Javid
Sajid Javid

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