BY JAMES TWOMEY
A 21 year old woman who has a severe form of epilepsy and suffers up to 200 seizures a day is battling with the Government to gain access to cannabis medication that can help her.
Kayleigh Morris, from Wimbledon, has a “severe and complex” form of epilepsy which can be helped with the drug – but it is not available on the NHS.
Her aunt Dee Morris is part of the End Our Pain campaign, which is trying to persuade the Government to make medical cannabis available on the NHS after it was legalised last year.
Without an NHS prescription Kayleigh needs to raise £5,000 to access the treatment either abroad or privately in the UK.
Dee said Kayleigh has nearly died twice as a result of her epilepsy but medical cannabis has helped in the past.
Dee said: “Her quality of life dramatically improved. She was well enough for me to be able to take her on holiday where she went horse riding for the first time and was able to experience full restful nights sleep in all of her life.
“With Kayleigh’s high level of severe and complex needs as well as experiencing up to 200 seizures a day it has been an absolutely exhausting and tireless fight.
“I see how the system treats our vulnerable members of society and there was no way I was going to sit back and watch someone I love so dearly become a part of that.
“But I do not understand why we are having to fight this way which is why I joined End Our Pain campaign.
“But I won’t give up the battle – I can’t. A young person’s life depends on my fight.”
Two reports looking at removing the barriers to medical cannabis were published last week, one by the NHS and the other by the National Institute for Health and Care Excellence (NICE).
The NICE report suggests medical cannabis should not be offered to those in chronic pain unless in a clinical trial – but the NHS report said the health service must support studies to gather evidence “as soon as possible”.
Dee said: “I have been left totally confused by two separate reports, issued on the same day, as have all the other parents in the End Our Pain Campaign.
“The NICE Clinical guidelines are ridiculous. It is worrying as clinicians rely on these guidelines.
“Myself and other parents from End Our Pain Campaign took part in the NHS review.
Their report after their finding was a positive, forward thinking, modern way of understanding cannabis medicine and reaffirming the need for trials – something us families have been begging them for.”
On March 19 this year, then Health Secretary Matt Hancock told End Our Pain campaigners: “I’ve heard enough to know that something has got to change”.
A spokesman for the Department of Health and Social Care said: “There is a clear consensus on the need for more clinical evidence.
“The decision to prescribe must remain a clinical one, made with patients and their families, taking into account the best available international evidence, the risks and benefits and individual circumstances.
“We will now carefully consider the NHS’s findings, to identify how we can support clinicians in prescribing cannabis medicinal products where appropriate.”
A NICE spokesman said: “The NICE draft clinical guideline and the NHS England report are not contradictory since both point to the need for further research.
Dr Keith Ridge, chief pharmaceutical officer at NHS England said: “Without sufficient evidence, it is clear clinicians are very reluctant to prescribe.
“We heard loud and clear the concerns and frustration the children’s families but these recommendations aim to help us develop the evidence to understand how safe these products are.”
Peter Carroll, director of the End Our Pain Campaign said: “Previously, the NHS was only interested in evidence from Randomized Control Trials which can take years and cost millions.
“For the first time the NHS has signalled trials have a role and, crucially, that they will support trials.
“But families are in urgent need of medical cannabis right now.
“Many are having to raise over £1,500 a month for prescriptions. Others are locked in battles with their local Trusts.
“We will be pressing the NHS to clarify their recommendations such as trials, who will be able to take part in them.
“This feels like a strong step forward, but there’s still a lot more required to help the families – and that help needs to come fast.
“For many of the families, this is a matter of life and death. Not only are they caring for very sick children, they have the added burden of having to raise thousands of pounds a month to pay for a medicine that is legal in the UK – often having to travel overseas to secure a supply.”
Dee is trying to raise £5,000 for Kayleigh to receive a second opinion from another doctor and to pay for a month’s worth of medication.
To donate, search Dee Morris on www.justgiving.com.