Why Billy’s Law doesn’t go far enough

Fea­tures Char­lotte Cald­well’s fight to le­galise medic­i­nal cannabis led to a law change. But, she tells Cara McGoogan, her cam­paign’s not over

The Sunday Telegraph - - Features -

Billy Cald­well’s epilep­tic seizures nor­mally oc­cur at night­time and al­ways start in the same way. His slight head, with straight, dark hair, lifts off the pil­low and starts to nod. The 13-year-old, who has se­vere epilepsy and autism, stays silent and his eyes stare for­wards as he slowly turns blue. Every mus­cle in his body starts to con­vulse with a tonic-clonic seizure.

If his mother, Char­lotte Cald­well, doesn’t give him oxy­gen and medicine right away, Billy could die. It’s why Char­lotte, 51, still sleeps every night next to him – she knows that her son’s next seizure could kill him.

In the past four weeks, Billy’s seizures have in­creased in fre­quency and sever­ity, a de­vel­op­ment that epilepsy spe­cial­ists say can hap­pen as chil­dren ap­proach pu­berty.

De­spite the Gov­ern­ment giv­ing the green light to doc­tors to pre­scribe medic­i­nal cannabis last week, the an­swer to Billy’s wors­en­ing con­di­tion lies still abroad. On the morn­ing af­ter “Billy’s Law” came into ac­tion, Char­lotte wasn’t tak­ing stock of her his­toric le­gal vic­tory; in­stead, she was pre­par­ing for a 3,500-mile jour­ney to Canada, the only place where Billy can still be legally treated. In the sit­ting room of the ser­viced apart­ment the Cald­wells are stay­ing in just off Great Or­mond Street, there is a large, grey suit­case and an A4 note­book filled with Char­lotte’s scrib­bles about Billy’s case.

Char­lotte is pleased to have fa­cil­i­tated a land­mark change in the law – which could give 6.7mil­lion peo­ple ac­cess to medic­i­nal cannabis, ac­cord­ing to the United Pa­tients Al­liance – but she says the Gov­ern­ment hasn’t gone far enough. Doc­tors, she says, still need to be given more pow­ers to pre­scribe cannabis prod­ucts and not just when other treat­ments have been ex­hausted.

Equally, the lat­est leg­is­la­tion still makes it dif­fi­cult to ac­cess cannabis medicines that have the psy­choac­tive in­gre­di­ent tetrahy­dro­cannabi­nol (THC) in them, which, com­bined with cannabid­iol (CBD), makes up the “life­sav­ing” dose her son Billy has been tak­ing twice a day for the past two years. THC, which re­mains out­lawed in the UK, can only be used in cer­tain med­i­cal cases, when the amount is so small it wouldn’t have an in­tox­i­cat­ing ef­fect, and it can only be pre­scribed by a hand­ful of med­i­cal pro­fes­sion­als.

When I ask what the new law has done to help Billy, Char­lotte pauses then says: “Noth­ing”. “If any­thing, it’s now more re­stricted,” she re­flects. “As of Thurs­day, Billy’s doc­tor in North­ern Ire­land will not be able to carry on pre­scrib­ing Billy’s medicine be­cause it’s not a li­censed prod­uct.”

This means, rather than cel­e­brat­ing af­ter months of cam­paign­ing, Char­lotte is now launch­ing an “ur­gent ap­peal” to put Billy on an ob­ser­va­tional trial that would al­low him to be treated in the UK – and mean the fam­ily could re­turn to County Tyrone, North­ern Ire­land, for Christ­mas.

The case first came to the na­tion’s at­ten­tion back in June when Billy nearly died af­ter the Home Of­fice con­fis­cated a six-month sup­ply of CBD oil with THC from the fam­ily at Heathrow Air­port on their way back from a med­i­cal trip to Canada.

Just 14 hours with­out his medicine and Billy had a seizure. Over the next three days, the fre­quency and sever­ity of seizures in­creased un­til Char­lotte called 999 on the Fri­day and took him to Chelsea and West­min­ster Hospi­tal.

“I thought I’d lost him,” Char­lotte re­calls. “At that stage, there was no hope of him get­ting back his medicine, which was in the vaults of the Home Of­fice.”

With Billy’s doc­tor declar­ing it a “med­i­cal emer­gency” and the coun­try watch­ing this lit­tle boy’s plight, the Home Of­fice came up with an un­prece­dented so­lu­tion. Home

Sec­re­tary Sa­jid

Javid is­sued an “ex­cep­tional” 20-day li­cence for a “short­term emer­gency” that al­lowed Billy to have the sub­stance ad­min­is­tered in a med­i­cal set­ting. On

Satur­day morn­ing, the medicine was sent in a taxi to Chelsea and West­min­ster Hospi­tal and Billy was given a small dose.

“It was the first time ever that medic­i­nal cannabis was ad­min­is­tered in a hospi­tal in the United King­dom via a doc­tor,” says Char­lotte. “It was in­cred­i­ble. I saw my lit­tle boy come back to life right in front of my eyes. Even the nurses were emo­tional.”

By Mon­day, Billy had sta­bilised and was dis­charged. “Ev­ery­body was pray­ing for him, the whole United King­dom prayed that he was go­ing to re­cover. Thank­fully, he did.”

Be­fore he started tak­ing medic­i­nal cannabis, Billy could have up to 100 seizures per day and was hos­pi­talised al­most weekly. Doc­tors cy­cled through nearly all epilep­tic drugs avail­able, at times put­ting him on a com­bi­na­tion of four or five at once. “They never worked,” says Char­lotte. In 2016, an ex­as­per­ated Char­lotte “walked the streets of North­ern Ire­land with a bucket in hand, in the rain, hail and snow”, rais­ing £170,000 to take Billy to a world-renowned epilepsy spe­cial­ist in Cal­i­for­nia. She says she “didn’t go to Los An­ge­les look­ing for medic­i­nal cannabis”, but was des­per­ate enough to be open-minded when the doc­tor re­ferred Billy to a re­search cen­tre.

“It wasn’t some­thing you would buy in a re­tail store or on the black mar­ket,” she says. “I have never given Billy medicine from the black mar­ket and never would.”

Af­ter months of tests in the US and a sec­ond round of fundrais­ing – for which Billy’s el­der brother Kyle, 34, ran a 350km loop of the Ir­ish coast­line with a 4.5-stone weight on his back – Char­lotte and Billy re­turned with a per­son­alised medic­i­nal cannabis pre­scrip­tion.

A week af­ter his six-month sup­ply of CBD oil was con­fis­cated and then re­turned, Mr Javid fi­nally an­nounced the le­gal­i­sa­tion of medic­i­nal cannabis. But Char­lotte is now hop­ing the Gov­ern­ment can give him a Christ­mas gift, too. “An ob­ser­va­tional trial in the UK, that is Billy’s Christ­mas present,” she says, be­cause it’s the only way Billy can be pre­scribed at home the strain of CBD and THC that he re­quires.

Given the de­te­ri­o­ra­tion of Billy’s con­di­tion in the past month – five seizures in the last week alone – the need is im­per­a­tive. It is pos­si­ble that he will need a dif­fer­ent dosage as his body ma­tures with pu­berty, and Char­lotte and Billy are fly­ing to Canada soon af­ter we meet for a re­view.

Un­der the new guide­lines, Billy wouldn’t be able to test un­li­censed com­bi­na­tions of CBD and THC in the UK un­less he did so as part of an ob­ser­va­tional trial, mon­i­tored by Bri­tish clin­i­cians.

“We ur­gently need some­one from one of the royal col­leges, a med­i­cal pro­fes­sional body or a spe­cial­ist clin­i­cian to come for­ward and start Billy on a trial,” she says. “That is the only way we can come home.”

She adds that medic­i­nal cannabis needs to quickly be made avail­able for those who need it. If not, she says, “it is only a mat­ter of time be­fore a child loses their life”.

Char­lotte has fought long and hard but there’s no chance of her giv­ing up. “We’re not go­ing to stop un­til we’ve got to the stage where medic­i­nal cannabis is avail­able on pre­scrip­tion via the NHS for ev­ery­body who needs it,” she says. “When you see your child have a life-threat­en­ing seizure and you don’t know if it’s go­ing to stop, you don’t have time for ex­haus­tion.

“You have to keep go­ing and you have to do ev­ery­thing to prevent his death. Billy is my world.”

‘It was in­cred­i­ble. I saw my lit­tle boy come back to life right in front of my eyes’

Frus­tra­tion: Char­lotte with Billy, whose seizures are con­trolled by a medic­i­nal cannabis that is not avail­able in the UK

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