Desperate for legal access to medical cannabis, Mother from Hull slams doctors for “playing God” with her epileptic son

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When medical cannabis was legalised in the UK in November 2018, British patients desperate for legal access thought their long wait was finally over.

However, patients like James Walker, who suffers severe epilepsy[1], are still waiting for prescriptions for the medication on the NHS.

Now, Gina, 45, James’ mother, is speaking out about the delay, criticising doctors for “playing God” with her son’s life.

James was diagnosed with a rare form of drug-resistant epilepsy when he was just two-months old. Due to the severity of his condition, doctors told his family that they did not expect him to live past the age of 10. Defying all the odds, James has just celebrated his 21st Birthday.

Due to the severity of the seizures James has endured, he is not able to verbally communicate. James has only been able to communicate from the age of 16 with the assistance of ‘eye gaze technology,’ which allows him the ability to talk via a computer system.

According to Gina, every seizure James endures is “like running a marathon,” but displaying true courage, James has kept his smile going strong, maintaining his “cheeky sense” of humour.

Using Hull Live[2] to share James’ incredible story of bravery and survival, Gina explained how traditional, pharmaceutical, medications did little to help relieve the brave boy’s suffering:

“James has tried every drug going to try and manage his epilepsy, but he’s had so many bad side effects with them.

“He had to start wearing glasses as one of the drugs affected his eyesight, and he’s had anaphylactic shock as well as stomach cramps[3] and diarrhoea with others, and none have really brought his condition under control.

“The only thing that has brought James down from having 100 tonic-clonic seizures a day to around 20 is thanks to his VNS operations.

“The device works like a pacemaker and floods his brain with good electricity when he’s having a fit, but he wears them out fast and has already had three implants in five years, when they’re meant to last much longer.”

I’m so angry as so many people like James need the cannabis oil but aren’t getting it – it’s unfair for doctors to be able to play God and decide who gets a potentially life saving prescription for it and who doesn’t.
– Gail Walker, Medical Cannabis Warrior & Dedicated Mother

After years of suffering, James’ doctors finally realised that his condition was more extreme, upgrading the severity of his condition:

“He was only actually diagnosed at 15 with Lennox–Gastaut syndrome and up until then, he used to glaze over in his eyes and not engage as even though he’s not brain damaged, he couldn’t engage with us as his mind was there but it was trapped in his body.”

Parents of children with James’ condition experience the same pain:

“I spent the first ten years of James’ life planning his funeral, just seeing his life as being on an egg timer.

“I just existed rather than lived which, looking back, made me so angry and upset as it felt like we were just looking out for which seizure would kill him, rather than enjoying life with him.

“So based on the prognosis he was given, we are so happy that he’s got to his 21st birthday.

“People think we must get used to James having seizures but you never do, and they can be terrifying.

“When I get up on a morning, I put the fact that he could have a serious fit that kills him in the back of my mind, but now and again I can still get overwhelmed and teary, mainly out of frustration.

“But then I see James smiling even after his seizures and think it’s him going through it, not me, and if he can be brave, then so can I.”

However, there is a medication which has the potential to help alleviate some of the suffering the Walker family has been living through for the past 21 years: medical cannabis, specifically CBD[4]:

“When I saw that medicinal cannabis oil could be prescribed for Lennox-Gastaut syndrome, I was desperate for James to try it to see if it would help him at all, as one fit could kill him if it pushes his heart too much.”

Unfortunately for James, an apparent medical postcode operates in in the UK, where patients in certain areas are being prescribed medical cannabis on the NHS, while others are left without:   

“We were told that he was top of list in Hull for CBD oil in adults, but now we are getting mixed messages at to whether he can get it.

“I feel like James has just been overlooked because he’s older and that doctors are reluctant to prescribe it because it’s new, but it’s so frustrating as I just want James to try anything that could help him.

“It’s not like it’s wacky baccy that he will be taking, and there are even NICE guidelines to be followed, so I don’t know why some patients are having it prescribed in some areas of the country but not others.

“I’m so angry as so many people like James need the cannabis oil but aren’t getting it – it’s unfair for doctors to be able to play God and decide who gets a potentially life saving prescription for it and who doesn’t.”

Patients like James should not have to beg for access to a medication which has been proven to be safe and effective. Medical cannabis should be offered to all who stand to benefit, especially when all other pharmaceutical medications have failed to help.

References

  1. ^ epilepsy (medicalmarijuana.co.uk)
  2. ^ Hull Live (www.hulldailymail.co.uk)
  3. ^ cramps (medicalmarijuana.co.uk)
  4. ^ CBD (medicalmarijuana.co.uk)

This article originally appeared here in https://medicalmarijuana.co.uk/desperate-legal-access-medical-cannabis-mother-hull-slams-doctors-playing-god-epileptic-son/

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