The Suffolk parents of a four-year-old girl with a severe form of epilepsy will march on Westminster to demand access to medicinal cannabis four months after the law was changed to help families.
Tannine Montgomery and Anthony Clarry, from Clare, near Sudbury, will converge on parliament today to lobby MPs after being denied NHS access to cannabis oil which has “massively improved” their daughter Indie-Rose’s condition.
Indie-Rose, who has has Dravet syndrome, has seen her seizures fall dramatically after using the oil, which is currently flown in illegally from Holland and costs £1,500 per month.
The Government changed the law in November to legalise access to medicinal cannabis which means specialist doctors are allowed to write prescriptions for cannabis oil containing both the chemicals CBD and THC.
But THC – the chemical compound in cannabis responsible for the ‘high’ – is not legal in the UK and the couple have seen prescriptions blocked by the NHS due to British Paediatric Neurology Association (BPNA) guidelines.
The guidelines cite concerns over the effect of exposure to THC on the developing brain of children.
The parents will be among 16 families marching on Downing Street and their visit coincides with an inquiry by the Health and Social Care Committee into the availability of access to medicinal cannabis.
Miss Montgomery said NHS trust doctors at West Suffolk Hospital in Bury St Edmunds and then Addenbrooke’s Hospital in Cambridge have failed to prescribe the oil containing both CBD and THC since November 1.
“Since using the oil, Indie’s condition has improved massively,” she said. “She has started living and is really enjoying her life.
“She’s started going to Riverwalk School in Bury St Edmunds four-days-a-week and she absolutely loves it. Her seizures have gone from about 40-50 a month to around 0-7.
“It seems insane that she is being denied access to something that gives her such a better quality of life.”
Miss Montgomery added that she will have to continue to fundraise and fly to Holland to get the drug until the policy is changed.
A West Suffolk NHS Foundation Trust spokesman said: “National guidance stipulates that we cannot prescribe the CBD treatment Indie-Rose’s family is requesting.
“National guidance also dictates that all CBD prescriptions should be completed by a specialist tertiary centre, rather than a district general hospital like ourselves.
“We continue to help the family in the ways available to us, including making specialist referrals where required, backing their national license application, and offering to support individual funding requests.
“We do not underestimate the impact that this condition has on their lives, and will continue to provide ongoing care and support as we’re able.”
Addenbrooke’s said it did not comment on individual cases.
A spokesman for NHS England said: “As with any new medicine where there is a need to build the evidence base, the NHS’s normal medicines governance systems apply and are being used to support good clinical practice and safe and effective prescribing for patients whilst the evidence base continues to be developed.
“The decision to prescribe medicinal cannabis is a clinical decision for specialist hospital doctors, made with patients and their families, to determine the most appropriate medication or course of treatment for an individual patient.”
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