By Alastair Fee & Ben Moore
A high-profile authorities climbdown which legalised a benignant of cannabis medicine connected the NHS 5 years agone misled patients, campaigners say.
It was thought the instrumentality alteration would mean the unlicensed drug, which treats a scope of conditions, could beryllium freely prescribed by specializer doctors.
But less than 5 NHS patients person been fixed the medicine, leaving others to either wage privately oregon miss out.
The authorities says information needs to beryllium proven earlier a wider rollout.
Legalisation of whole-cannabis medicine was hailed arsenic a breakthrough for patients - giving either NHS oregon backstage specializer doctors the enactment to prescribe it if they believed their patients would benefit.
Medical full cannabis uses the full cannabis works - which includes the compound THC, the portion which tin marque radical consciousness high.
But patients are being turned away, accidental campaigners, due to the fact that doctors often bash not cognize astir the medicine, which is not connected NHS trusts' approved lists. Some specialists who bash cognize astir it accidental determination is insufficient grounds of the drug's information and benefits to enactment prescribing.
The cause would request to acquisition aesculapian trials earlier it could beryllium officially licensed - but these are costly and analyzable due to the fact that of the galore chemic compounds wrong the cannabis plant. Campaigners accidental trials of medicines containing full works cannabis, peculiarly with the purpose of helping children, would beryllium unethical arsenic immoderate patients would person to travel disconnected indispensable medicine to instrumentality a placebo.
Five years aft aesculapian cannabis was legalised, wherefore is it truthful hard to get a prescription?
The BBC has been told that erstwhile specializer doctors bash privation to prescribe the unlicensed products, determination is nary elemental mode to get funding.
They person to inquire NHS England to marque an objection to wage for idiosyncratic cases, but they are astir ever turned down. It is known that less than 5 person been approved.
Licensed cannabis drugs bash beryllium for circumstantial conditions - but they bash not usage the full plant. For illustration 1 called Epidiolex contains different cannabis compound - CBD. It tin beryllium prescribed for epilepsy but does not payment patients crossed the spectrum of epilepsy disorders.
'I felt similar I changed history'
The archetypal diligent to person an NHS medicine for aesculapian cannabis was 11-year-old Alfie Dingley, who has terrible epilepsy.
His mother, Hannah Deacon, from Kenilworth successful Warwickshire, successfully spearheaded the high-profile run which led to the 2018 authorities change.
Before then, Alfie travelled to the Netherlands wherever whole-plant cannabis lipid is ineligible nether medicine for aesculapian purposes.
Following Hannah's campaign, Alfie's GP was granted a licence to prescribe it nether absorption by a specializer doctor, successful a process called a shared attraction agreement.
Alfie's parent believes the attraction has been life-changing - helium has not had a seizure for 3 years. He gets 13 bottles of Bedrolite connected an NHS medicine each month. The outgo would different beryllium £225 per bottle.
Hannah says backmost successful 2018, she felt similar she had changed history, opening up the attraction to radical with a wide scope of debilitating conditions including chronic pain, insomnia and neurological conditions similar Tourettes.
But now, she feels she lone got the cause connected the NHS due to the fact that she made a immense fuss successful the media.
"I deliberation they changed the instrumentality to instrumentality the upwind retired of my sails due to the fact that the run was precise effective," she says.
Senior paediatric advisor Dr David McCormick, from King's College Hospital successful London, says it was "disingenuous" of the authorities to suggest successful 2018 that NHS prescribing was acceptable to instrumentality place.
Ministers "shifted the heat" to practitioners similar him, helium says.
"Parents were clamouring astatine our door, oregon phoning each the time, arsenic they believed we were capable to prescribe and that was not the case.
"The connection went out, 'doctors tin present prescribe cannabis products' and that enactment america successful a hard position, due to the fact that successful information we request to use for that to beryllium approved by NHS England."
£1,600 for a six-week supply
Pre-2018, the lone mode patients could get clasp of cannabis products and usage them medicinally was to bargain them illegally successful the UK, oregon to question overseas to get them. Now, if the NHS volition not pay, they tin legally wage for backstage prescriptions from specializer clinics.
There are present 31 backstage prescribing centres crossed the UK. These clinics issued much than 140,000 prescriptions betwixt November 2018 and 2022.
It is estimated that the aesculapian cannabis marketplace volition beryllium worthy £1bn successful 2024.
One backstage diligent is 13-year-old Jasper Salisbury-Jones, from Brixton successful southbound London, who - similar Alfie Dingley - has a uncommon signifier of epilepsy.
"By the clip helium was 11, helium was having astir 800 seizures a day, which sounds ridiculous but that was wherever we got to," says Jasper's mum, Alice Jones. "The doctors did accidental we were retired of options, truthful the anticipation was that yet a seizure would termination him."
Jasper had tried 9 antithetic different medicines, had encephalon surgery, and an electrical implant was enactment successful his thorax - but thing would halt his fits.
Then helium tried aesculapian cannabis lipid and his parent says his seizures, which erstwhile dominated his life, present lone hap each fewer days.
"It's conscionable jaw-dropping," Alice says. "For this medicine to bash this is incredible."
Jasper has been incapable to get aesculapian cannabis connected the NHS. His parents present wage a backstage session £1,600 for a six-week supply. That outgo is apt to summation arsenic Jasper gets older and bigger.
The mates are utilizing their savings to wage for the medicine and Alice nary longer pays into her backstage pension. While they accidental it is financially precise difficult, she knows they are lucky.
"We're not choosing betwixt this and different medicine oregon a signifier of treatment, we're choosing betwixt this and watching my lad dilatory gaffe into intelligence disablement and past astir apt paralysis and death," she explains.
'Esme's being denied'
But 1 genitor who cannot get an NHS medicine - oregon spend to wage for 1 privately - is Carly Ashton, an ex-social idiosyncratic from Christchurch successful Dorset.
Her two-and-a-half-year-old girl Esme has an highly uncommon signifier of epilepsy that affects 1 successful 600 children worldwide. Esme has been treated with 15 antithetic drugs and presently spends overmuch of her beingness sedated.
Carly has been warned that if her information is not brought nether control, Esme could dice abruptly from a seizure.
"Ultimately they could go much violent, they could origin breached bones, aggregate infirmary admissions, it could origin her to dice successful her sleep," she explains.
She finds the concern precise unfair, knowing determination are children with the aforesaid information who accidental they are benefitting from taking a signifier of aesculapian full cannabis.
"They are astir seizure-free oregon [entirely] seizure-free. It's fixed their beingness back. Esme's being denied that opportunity," she says.
Hannah Deacon says she is heartbroken that authorities she fought for has not led to the hoped-for change.
"I find it shocking that the authorities has virtually conscionable washed their hands of this problem," she says.
The Department of Health and Social Care (DHSC) said successful a statement: "Licensed cannabis-based medicines tin beryllium funded by the NHS wherever determination is wide grounds of their quality, information and effectiveness.
"It is important to cautiously reappraisal grounds connected unlicensed cannabis-based treatments to guarantee they are proved harmless and effectual earlier they tin beryllium considered for rotation retired connected the NHS much widely."
The authorities besides adds that if a backing petition for this medicine is not approved by an autarkic sheet of experts, it cannot intervene successful that decision.
The BBC contacted NHS England but it declined to comment, stating lone that the DHSC effect was "robust".
In Scotland, wellness boards would marque the determination connected whether to money a specialist's petition for a prescription.
NHS Wales said: "Where an NHS healthcare nonrecreational wishes to prescribe these products arrangements are successful spot for the NHS to consider, and wherever appropriate, conscionable their cost."
The National Institute for Health and Care Excellence's (NICE) guidelines authorities it recommended probe into the usage of unlicensed cannabis-based medicines for terrible treatment-resistant epilepsy.
The body, which is liable for deciding which drugs and treatments should beryllium disposable to patients connected the NHS, said determination was insufficient grounds of the medicines' information and effectiveness to urge it for the full colonisation of radical with the condition.
But it added that this should not beryllium interpreted by doctors arsenic meaning they were prevented from considering the medicines wherever clinically appropriate. It says they tin beryllium prescribed connected proposal of a specialist, successful consultation with the patient.