{"id":24361,"date":"2022-05-16T09:29:23","date_gmt":"2022-05-16T08:29:23","guid":{"rendered":"https:\/\/cannabishealthnews.co.uk\/?p=24361"},"modified":"2022-05-16T09:39:11","modified_gmt":"2022-05-16T08:39:11","slug":"acces22-my-daughters-seizures-reduced-by-95-on-medical-cannabis","status":"publish","type":"post","link":"https:\/\/cannabishealthnews.co.uk\/2022\/05\/16\/acces22-my-daughters-seizures-reduced-by-95-on-medical-cannabis\/","title":{"rendered":"My daughter\u2019s seizures reduced by 95% on medical cannabis – why is it not available on the NHS?"},"content":{"rendered":"

Three-year-old Clover Carkeet’s seizures have reduced by 95 per cent with medical cannabis – so why has her family had to fight so hard to maintain access to it?<\/h3>\n

Clover had her first seizure at just 12 weeks old. Doctors diagnosed her with infantile spasms, a \u2018catastrophic\u2019 form of epilepsy that is among the most brain-damaging conditions of its kind.\u00a0<\/span><\/p>\n

Early signs of the condition were discovered when her mum, Emily Carkeet, was 30 weeks pregnant.\u00a0<\/span><\/p>\n

She was told that Clover was missing the part of her brain that connects the left hemisphere to the right, known in medicine as the corpus callosum.\u00a0<\/span><\/p>\n

Seventy five per cent of newborns with the condition will grow up to live completely normal lives, but sadly Clover is among the minority that develops neurological issues from early childhood.<\/span><\/p>\n

\"MyAccess<\/a><\/p>\n

Like many children diagnosed with rare forms of epilepsy, Clover was started on a heavy dose of steroids which she took for six weeks.\u00a0<\/span><\/p>\n

\u201cIt was a really awful time for us,\u201d Emily recalls. \u201cThey made her extremely poorly. She was so upset and angry. She was basically just staring into space.\u201d<\/span><\/p>\n

After the steroids, Clover was started on a strong antiepileptic drug called vigabatrin, with her enjoying five months without seizures. The freedom gave her the chance to develop, and even learn to crawl.<\/span><\/p>\n

\"My

Spencer, Emily and Clover Carkeet<\/p><\/div>\n

Trying CBD<\/b><\/h4>\n

But it wasn\u2019t just the vigabatrin that was aiding her recovery, Emily believes.\u00a0<\/span><\/p>\n

When Clover was four months old, her parents began giving her tiny doses of over-the-counter CBD oil called Hayleigh\u2019s Hope. In the early days of Clover\u2019s diagnosis, Emily had connected with hundreds of families whose children suffered from similar conditions.<\/span><\/p>\n

\u201cI was always searching for the answers for Clover,\u201d Emily says.\u00a0<\/span><\/p>\n

\u201cI found that the children who were taking some form of CBD all seemed to be developing fairly normally. Their seizures were well controlled and they were spending less time in hospital.\u201d<\/span><\/p>\n

She continues: \u201cEvery time we increased her dose she would learn something new, physically her development was ahead of some of her neurotypical peers, she crawled at nine months and walked at 13 months, all these things that they said she wouldn\u2019t do.\u201d<\/span><\/p>\n

But after five months Clover relapsed and developed something called focal seizures. Despite increasing her pharmaceuticals, her condition worsened until she was having as many as 100 seizures a week.<\/span><\/p>\n

95% reduction in seizures<\/b><\/h4>\n

At this point, Emily and her partner, Clover\u2019s father, Spencer, were at a \u201ccrossroads\u201d. Either introduce more pharmaceutical medication or pursue a CBD prescription.<\/span><\/p>\n

\u201cIt became abundantly clear that what we could buy over the counter just wasn’t strong enough for her,\u201d Emily says.\u00a0<\/span><\/p>\n

\u201cWe were at a crossroads really; we could either add more meds\u2026 but we had made a vow in those early days that that was not what we wanted for her. We wanted to give her a chance to have a quality of life, and we believed the best chance of that was by staying as far away from heavy duty drugs as possible.\u00a0<\/span><\/p>\n

\u201cThat’s when we decided to go down the prescription route.\u201d<\/span><\/p>\n

Clover met criteria and was able to access a legal prescription for medical cannabis in August 2020. By November, her seizures had dropped to just three or four per week – a 95 per cent reduction.\u00a0<\/span><\/p>\n

The following April, the family added the THC-containing oil Bedica to Clover\u2019s course of medication, which is when the number of seizures fell \u201cdramatically\u201d.<\/span><\/p>\n

\u201cTHC was the game-changer for her. She was sometimes going 10 days without a seizure,\u201d says Emily.<\/span><\/p>\n

\u201cThe biggest doubt for me was that THC might have detrimental behavioural and developmental effects, it worried me, but less than having her on a benzodiazepine, wired up to machines in hospital. As her mum I\u2019ve always followed my gut instinct.\u201d<\/span><\/p>\n

\"My

Clover’s parents say THC was a “game-changer” for her<\/p><\/div>\n

Battling the BPNA\u00a0<\/b><\/h4>\n

Despite Clover\u2019s parents seeing a huge improvement in her condition and quality of life, the family faced losing her access to the medicine when her prescribing doctor was reported to the General Medical Council (GMC) last year.\u00a0<\/span><\/p>\n

Although she doesn\u2019t know the details of how it came about, the complaint was made shortly after Emily wrote to Clover\u2019s neurologist in the NHS outlining her daughter\u2019s positive response to cannabis-based medicines.\u00a0<\/span><\/p>\n

The complaint, believed to have come from the British Paediatric Neurology Association (BPNA), centred around Clover\u2019s age as at the time, at 17 months old, she was the youngest child in the UK to be prescribed the medicine. It stated that the doctor was not a neurologist and therefore should not be prescribing.\u00a0<\/span><\/p>\n

BPNA guidance<\/a> claims that cannabis medicines can only be prescribed in children with epilepsy by a paediatric neurologist. But this is not stated anywhere in current legislation.\u00a0<\/span><\/p>\n

The case ended up being dismissed, with <\/span>the GMC\u2019s independent medical expert quoted during the review as saying the BNPA position is \u201cprobably not in the best interests of <\/span>children<\/span><\/a>\u201d.<\/span><\/p>\n

\u201cDoctors sign a Hippocratic oath then they don’t do what’s best for their patients. It’s very negligent to deny these kids a medicine that clearly works for them,” says Emily.<\/span><\/p>\n

\u201cWhat I don’t understand is this necessity to throw so many drugs at them just because they\u2019re licensed.<\/span><\/p>\n

\u201cIn my opinion – and logic should rule here – if a child finds something that works, why would you then force them to go back and try all these other things that may be detrimental to them? I find this concept of using cannabis as a last resort absolutely crazy.\u201d<\/span><\/p>\n

Emily believes that the BPNA guidance on medical cannabis is part of the reason why NHS access is so limited for children with epilepsy.<\/span><\/p>\n

\u201cThey complained about Clover and made no effort to speak to me about how she was doing at all. They don’t listen to us as parents, even though, when you’re a parent of a child with epilepsy, you become the expert on their condition,\u201d she says.<\/span><\/p>\n

\u201cIt\u2019s just so wrong on so many levels.\u201d<\/span><\/p>\n

\"\"

Emily and Spencer, with Clover, on their wedding day recently<\/p><\/div>\n

A \u201cconstant juggling act\u201d\u00a0<\/b><\/h4>\n

Clover is doing well developmentally and starting to communicate more as she reduces her prescription drugs, something Emily puts down to the medical cannabis.\u00a0<\/span><\/p>\n

\u201cI had read about neuroprotective benefits from cannabis and genuinely think that because she’s had it in her life since she was so young, it’s probably protected her brain,\u201d she says.\u00a0<\/span><\/p>\n

\u201cWe’ve never seen any regression from any of her seizures and I honestly think it\u2019s the cannabis we have to thank for that.\u201d<\/span><\/p>\n

She attends nursery and Emily has been able to return to work. Something which has been a lifeline in funding Clover\u2019s prescription, which currently costs around \u00a31,000 a month.\u00a0<\/span><\/p>\n

Emily and Spencer are able to fundraise, but still pay \u00a3600 each month out of their own pockets. Emily describes the situation as a \u201cconstant juggling act\u201d.<\/span><\/p>\n

\u201cI feel an extreme pressure to be working more than I am because we have this prescription to pay for,\u201d she says.<\/span><\/p>\n

\u201cThe person who suffers from this is Clover because she doesn’t get as much of her mum as she needs.\u201d<\/span><\/p>\n

But despite their struggles, Emily feels lucky they have access to the treatment when so many families in the UK are unable to obtain a prescription even privately.\u00a0<\/span><\/p>\n

There is currently only one paediatric neurologist prescribing<\/a> for children with epilepsy in the UK, and he is not currently taking on any new patients.\u00a0<\/span><\/p>\n

\u201cThere are so many parents who are desperately trying to get this medicine, because they see the results,\u201d she adds.<\/span><\/p>\n

\u201cIt\u2019s an injustice that they can\u2019t access it.\u201d<\/span><\/p>\n

\u00a0<\/p>\n\n\n