She says that without the hemp-based compound Kayleigh Morrisâs fits have increased fromÂ 10 a day to 200 while sheâs been treated at St Georgeâs Hospital, south London.
âItâs a breach of her human rights to deny her thisâ
Her aunt,Â known as Dee, is now in a legal battle with the NHS authorities over who has the final say in the care of the 21-year-old with learning difficulties.
She said medics have put Kayleigh back onÂ anti-epileptic tablets, against Ms Morrisâ wishes, despite her suffering serious side effects while on them in the past.
In May, she was vomiting blood, collapsed and needed a blood transfusion â because of the medication she was on, according to Ms Morris.
She told i: âKayleigh is at serious risk of brain injury or death from having so many seizures.
âThe CBD oil has worked wonders for her. The type I have that the hospital wonât let me give her is legal and classed as a food supplement.
âItâs a breach of her human rights to deny her this.â
Kayleigh has the mental capacity of a child of around 10, due to a lack of oxygen during a difficult birth.
âThe doctors have tried Kayleigh on various anti-epileptic meds over the years and none of them have got her fits under controlâ
Ms Morris, a 43-year-old psychotherapist from London, took on caring for her and her sister Charley â her brotherâs children â when they were seven and three respectively.
Kayleigh was diagnosed with epilepsy at 12 and spent all of her teens suffering uncontrolled seizures â sometimes having up to 50 a day.
âThe doctors have tried Kayleigh on various anti-epileptic meds over the years and none of them have got her fits under control and have come with some very serious side effects.
âTheyâve caused her severe headaches, dizziness and sickness on a daily basis. She completely lost her appetite and lost two stone. She had no quality of life and became very withdrawn.â
Then Kayleigh was prescribed lamotrigine, a drug that hasÂ recognised side-effectsÂ of vomiting and causing a life-threateningÂ blood clotting problem.
âShe was admitted to Kingston Hospital for eight days after vomiting blood, then she needed a blood transfusion.
âIt was then that I told her neurologist I was afraid the meds were going to kill her. I told her Iâd done lots of research and I wanted to try her on CBD. But she was very against this and against taking her off herÂ anti-epileptic medication.
âI was told by anÂ epilepsy nurse who said that she couldnât officially approve of what I was doing but instructed me how to safely wean her off her medication and thatâs what I did. I was very open about what I was doing and why.â
Ms Morris also asked the hospital for their support in applying for a licence to be prescribed medicinal cannabis â a requirement for permission to be granted â but says she was âignoredâ.
âThey didnât even reply to my letter,â she said.
Cannabis prescriptions on the NHSÂ
Earlier this year, doctors were given the green light to legally prescribe medical cannabis products to patients in the UK from this autumn. The decision to relax the rules followed high profile cases involving children â such as Alfie Dingley â whose conditions would have been helped by cannabis oil.
Cannabis plant extracts (known as hemp or CBD oils) are available in high street stores but the tetrahydrocannabinol (THC) content must be below 0.2 per cent. THC is the psychoactive element that gets recreational users âhighâ. CBD without THC does not have the sameÂ effect.
But thereâs no guarantee these over-the-counter products are of good quality or provide any health benefits.Â In 2016, the UKâs drugÂ regulator, Medicines and Healthcare products Regulatory Agency (MHRA), said that cannabis products, if advertised for medical purposes, needed to be licensed.
It is why patients and parents of sick children have pushed for regulated medicinal cannabis to be made available to them.
News of the first handful of people being prescribed medicinal cannabis has recently hit the headlines. Currently, it is only likely to be prescribed for children and adults with rare, severe forms of epilepsy and adults with vomiting or nausea caused by chemotherapy.
However, the first child believed to be prescribed medical cannabisÂ in the UK has been unable to gain access to the drug, it has been reported.Â Jorja Emersonâs father, Robin claims he cannot get the drug because no UK pharmacy holds a licence to sell it.
âSheâs now having over 200 seizures, due to having no CBD oil for a week and because of all the stress and anxiety theyâve caused her through the heavy-handed way theyâre handling itâ
So Ms Morris carried on using the CBD oil â which she says contains no THC â and reducedÂ Kayleighâs fits from 50 a day to 10.
Last week, Kayleigh was admitted to St Georgeâs Hospital, in Tooting, for an assessment because her neurologist had queried if she did actually have epilepsy.
âIt was meant to be a 48-hour assessment to determine her condition and within 10 minutes they were wanting to medicate her.
âKayleigh got upset because she is absolutely terrified of medication because of what itâs done to her in the past. The doctors stood over her and warned her it was illegal for her not to take the medication.
âShe has learning difficulties that are not unlike autism â and sheâs very child-like. The way they have treated her caused her great anxiety and stress and they wanted to sedate her using a drug similar to Valium. Now she has an immense fear of hospitals.â
Despite Ms Morrisâ protestations, the staff putÂ Kayleigh on two new anti-epilepsy tablets.
âSheâs now having over 200 seizures, due to having no CBD oil for a week and because of all the stress and anxiety theyâve caused her through the heavy-handed way theyâre handling it.
âThey want to inject her in the back of her head for the headaches with some medication when I have told them the CBD works.
âBut they have told me I am not allowed to administer it to her. They have us on 24/7 video surveillance on a locked ward â theyâve made us prisoners in the hospital.â
A spokesperson for St Georgeâs Hospital said: âWe cannot discuss any aspects of the care we provide for individual patients due to patient confidentiality.
âHowever, we would like to stress that decisions about the care and treatment our clinicians provide are taken in the best interests of our patients, and the communities we serve.â
âThere is all this talk about parents being given the right to choose treatment for their child â but this is just not happening in realityâ
Ms Morris explained she was awarded special guardianship ofÂ Kayleigh and her sisterÂ which means she had legal responsibility for the day to day decisions relating to a their care and upbringing.Â However, this last only until a child is 18.
The hospital has now applied for aÂ Deprivation of Liberty order, which meansÂ Kayleigh could be classed as lacking the mental capacity to make her own decisionsÂ so doctors can give her the treatment they believe she needs.
Ms Morris says she has only just now found out that her parental rights had expired and that she could have applied for a health and welfare lasting power of attorney.
âI was in bits when they told me about this, they are taking away my rights.Â Kayleigh and Charley are just like my own daughters. I gave up my life for them and they are my world.
âThere is all this talk of cannabis being recognised in the UK for its health benefits and about parents being given the right to choose treatment for their child â but this is just not happening in reality.â