Nine-year-old cerebral palsy sufferer Ben can have up to FIFTEEN seizures each hour
But his mum Joanne said Alder Hey has declined to pay for medication to help alleviate Ben’s condition – even though his own neurologist had recommended it.
Instead his medication was changed, but this led to the seizures becoming so bad that Ben was admitted to hospital.
Joanne, 43, said: “All of this is due to the Trust not wanting to fund this medication as they are worried all the children will want it and it will cost too much money. So my child is left to suffer.
“I have put an appeal in as my son’s life is now at risk due to Alder Hey Children’s Hospital trust not wanting to fund special medicines.
“Ben’s neurologist had no option but to try and increase the epilepsy drug as the Trust won’t let him prescribe the medication that could work for my son, Ben has exhausted all viable treatment options now and has clinical need for this medicine.
“This is so wrong that a child should be left to suffer seizures that could further brain damage him or take his life because of funding.
“The cost of looking after a disabled child with health problems will be far more than the cost of this medicine.”
NHS guidelines on medical cannabis
Can I get a prescription for medical cannabis?
Very few people in England are likely to get a prescription for medical cannabis.
Currently, it is only likely to be prescribed for the following conditions:
- children and adults with rare, severe forms of epilepsy
- adults with vomiting or nausea caused by chemotherapy
And it would only be considered when other treatments weren’t suitable or hadn’t helped.
How do I get a prescription?
You cannot get cannabis-based medicine from your GP – it can only be prescribed by a specialist hospital doctor.
And it is only likely to be prescribed for a small number of patients.
A hospital specialist might consider prescribing medical cannabis if:
- your child has one of the rare forms of epilepsy that might be helped by medical cannabis
- you have spasticity from MS and treatments for this aren’t helping
- you have vomiting or feel sick from chemotherapy and anti-sickness treatments aren’t helping
The specialist will discuss with you all the other treatment options first, before considering a cannabis-based product.
A prescription for medical cannabis would only be given when it was believed to be in your best interests, and when other treatments hadn’t worked or weren’t suitable.
It’s expected this would only apply to a very small number of people in England.
Joanne, who is originally from Formby but now lives in Much Hoole, Lancashire, said Alder Hey were not sticking to NHS guidelines in refusing to supply the medicinal cannabis product, called Bedrocan.
A spokesperson for Alder Hey Children’s NHS Foundation Trust said: “The Trust cannot comment on individual cases.
“Neurologists at Alder Hey will consider whether a child is eligible to take cannabis based medical products taking into account a number of factors.
“This includes the clinical history of the child, the scientific and clinical evidence for use of cannabis based medical products in particular clinical situations, and the published guidance from NHS England and the British Paediatric Neurology Association (BPNA).
“Alder Hey always works closely with families to discuss treatment options.”