Hope for dozens of families as country’s first medical cannabis charity plans to offer grants to epilepsy and MS patients forking out for private prescriptions
- Sapphire Medical Foundation aims to dish out grants to 20 patients next year
- They will target poor families unable to afford expensive private prescriptions
- It will heap pressure on government as drugs still inaccessible after law change
Dozens of patients needing medicinal cannabis could be given free prescriptions by a charity hoping to help poor families.
MailOnline can reveal the Sapphire Medical Foundation is hoping to launch in early 2020.
The charity – not yet approved by British regulators – plans to dish out grants for the hard-to-access drug to 20 patients in its first year.
Dozens of low income families have forked out up to £2,000 a month for private prescriptions of medicinal cannabis.
Sapphire, which will be the first of its kind in the UK and set up with the help of an MP, said it wants to help families who may struggle to afford these bills.
It said it didn’t want poor patients to be denied the drugs, which advocates say are ‘life-changing’ for alleviating crippling pain and seizures.
The Sapphire Medical Foundation aims to help children like Said el Youssef, nine, who suffers from intractable epilepsy which has plagued him with dozens of seizures a day – but cannot afford private prescriptions
The youngster is in-and-out of hospital due to his condition and can’t get a proper night’s sleep
The charity is hoping to launch in early 2020 and provide grants for 20 patients in its first year. It will be run out of the Sapphire Medical Clinic in London (shown)
Despite a law change to legalise medical cannabis last November, there have reportedly only been two NHS prescriptions written.
A lack of clear guidance on how to prescribe it and issues over funding for the drugs has prevented many patients from getting the drugs they are desperate for.
This means many who are battling severe epilepsy, multiple sclerosis and chronic pain are using costly private clinics to get hold of the drug.
Others have ventured abroad in search of medicines, with some bringing them into the UK illegally and risking jail.
Medicines derived from cannabis are not routinely available on the NHS because of concerns not enough research has been done into the benefits of THC.
THC is the main psychoactive ingredient in cannabis, which advocates claim is what helps the medicines combat crippling pain and seizures.
Campaigners hope the launch of the charity will heap pressure on NICE to make the the medicines available.
Patients who receive grants through the Sapphire Medical Foundation will have access to cannabis medicines through the Sapphire Medical Clinic in Marylebone, London, which is run by the same owners.
MailOnline revealed last month it had become the first practice in Britain to be Government-approved for dishing out medicinal cannabis prescriptions.
The foundation’s grants will cover the entire costs of the drugs for up to a year, after which patients will be asked to reapply for consideration of further funding.
The average prescription for medical cannabis is several hundred pounds a month – but patients with more severe illnesses are paying thousands.
Any patient is eligible to apply through an online application form, but there will be stringent means-testing ‘in order to help the poorest’, the founders said.
One of the founding trustees of the foundation, Conservative MP for Hemel Hempstead, is Sir Mike Penning, who has campaigned in favour of medical cannabis.
‘I was delighted to play a role in achieving the law change of November last year which saw cannabis re-scheduled allowing it to be prescribed by specialist doctors,’ he said.
‘But one year on, the number of patients actually getting access is pitifully small.
‘Private clinics are playing their part in widening access, but it’s essential that everything is done to make sure people on more modest incomes can get access.’
Alfie Dingley, six, is one of only two children in the UK to have an NHS prescription for medical cannabis to treat his severe epilepsy. A campaign run by his family and the families of others with similar conditions was the tipping point for Government to legalise medical cannabis
Billy Caldwell, 13, pictured with his mother Charlotte, thrust the cannabis debate into the limelight when Mrs Caldwell was stopped at Heathrow Airport while trying to smuggle cannabis oil home to her son, who is severely epileptic
The Sapphire Medical Foundation said there was no salary cap for applicants but that income from all sources in addition to capital would be considered.
Dr Mikael Sodergren, academic lead of Sapphire Medical Clinics said: ‘There is enormous pent up patient demand across a whole range of conditions including childhood epilepsy syndromes and chronic pain.
‘But the medical establishment is taking time to adapt to this new treatment option and access via the NHS is extremely tight.
‘We recognise that cost is an issue for many people on constrained incomes. We believe it is the right thing to reduce the financial barriers associated with cannabis-based medicinal products.’
The foundation has applied to the Charity Commission and Fundraising Regulator guidance to become a registered charity and expects to hear back this month.
Sir Mike Penning added: ‘I am delighted to be a prospective trustee of this new charity.
‘It is heartbreaking to meet the patients and their families who are in such desperate need of this medicine but who are having to either go without, struggle to raise enormous sums of money to pay privately or break the law to achieve access.
‘I know that the public continue to be moved by the distressing cases that feature regularly in the media of patients and their carers being denied access to medical cannabis and having to raise thousands of pounds to fund it privately whilst still having to cope with the condition itself.’
‘We want our hearts to stop hurting and our son to live a good life’: Family who can’t afford private prescription for son with severe epilepsy hail charity’s launch
Said el Youssef, nine, suffers from intractable epilepsy which has plagued him with dozens of seizures a day since he was one.
The youngster, from London, is unable to get a good night’s sleep because he is in pain such pain and distress.
His parents say their son is on four different types of the highest dose anti-epilepsy medications but they are doing nothing to alleviate his symptoms.
They said he used to be able to walk and say ‘mummy’ and ‘daddy’ – but his condition has deteriorated so much he is now mute and resigned to a wheelchair.
Said el Youssef, nine, suffers from intractable epilepsy which has plagued him with dozens of seizures a day since he was one
The youngster, from London, is unable to get a good night’s sleep because he is in pain such pain and distress
Said’s eight-year-old sister cries at night because she doesn’t understand why her brother won’t play and doesn’t go to school with her.
The family have tried to get medical cannabis on the NHS but have been waiting months for a decision. It is not known whether a prescription, if written, would be approved.
And they do not have the financial means to afford the medicine privately, as both have given up work to be full-time carers to Said.
Said’s father said: ‘I cannot explain what is going on in my family. No one can sleep and everybody is screaming and in pain watching our beautiful son deteriorate.
‘He used to be able to say mummy and daddy but he has lost the ability to talk and walk now.
‘We cannot put into words how grateful we are that Sapphire Medical Foundation might be able to help us.
‘My wife and children are so happy we don’t have the words to say except thank you.
‘We just want our hearts to stop hurting and give our son the best, most normal life possible’.
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