Walk to raise funds for medicinal cannabis for Indie-Rose
PUBLISHED: 05:30 20 June 2019 | UPDATED: 08:11 20 June 2019
Fundraisers are to set off on a 20 mile walk in aid of Suffolk girl Indie-Rose Clarry, whose parents have to buy cannabis oil medication in Holland because they cannot get it prescribed on the NHS.
The walk from the abbey ruins in Bury St Edmunds to Clare Castle country park at Clare, near Sudbury, is for Indie-Rose Clarry, aged five.
Indie-Rose, from Clare, suffers from a rare form of epilepsy called Dravet syndrome.
Conventional medicine has not been able to help her but for the last year, and following crowdfunding of thousands of pounds by their community, Indie-Rose's parents, Anthony Clarry and Tannine Montgomery, have been able to buy medicinal cannabis in Holland prescribed by a Dutch doctor.
They say since taking the drug her seizures have greatly reduced and helped her live a normal life.
However it costs around £1,500 a month to buy the medication in Holland and they are campaigning to have it prescribed to her on the NHS.
They have a private prescription for the medication from a UK doctor but it costs around £500 a bottle and Indie-Rose needs seven bottles a month, so they have to use the Dutch prescription.
The walk starts in the old abbey grounds at 10am on Friday June 21 and will conclude in Clare country park with the lighting of the beacon there, along with an evening of activities including live music, drumming and yoga deminstrations.
Giles Bryant of the Clare-based World Healing Project, who has co-organised the event with Indie-Rose's family, said the event tied in with the summer solstice and the Suffolk Day weekend of events.
"Suffolk Day helps highlight how the community here is supporting Indie-Rose and her family on this important issue." he said.
"We are really trying to show how important this is - here is someone who is clearly benefitting from this medication and yet her community are still having to help fund it."
The Government changed the law last November to legalise access to medicinal cannabis.
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Specialist doctors are now allowed to write prescriptions for cannabis oil containing THC, the chemical compound responsible for the 'high'.
However since then only a handful of NHS prescriptions have been granted.
Anthony said the family had applied to the NHS for an Individual Request for Funding (IRF) but this had been turned down by West Suffolk NHS Foundation Trust, their local trust.
An IRF allows doctors to ask NHS England to fund a treatment which would not usually be provided for a patient when they believe their case is different.
Having obtained a private prescription from a UK doctor the family felt they had a case for winning an NHS prescription, but this was turned down by the hospital.
Anthony said: "Our doctor has told us he does not want Indie-Rose to stop using the medication because it has had such a positive effect on her but we our application for an IRF was refused.
"NHS England is looking at our case, along with others, to see if there is a way forward but it is very frustrating."
A West Suffolk NHS Foundation Trust spokesperson said: "National guidance stipulates that we cannot prescribe the cannabidiol treatment the family is requesting via this non-NHS prescription, and because this is a drug we can't provide, the funding request didn't meet necessary criteria.
"Cannabidiol prescriptions should be completed by a specialist centre. As a general hospital we don't fit this category so are not commissioned to prescribe these medicines.
"We continue to help the family in the ways available to us, including making specialist referrals to NHS trusts that are able to prescribe in a way we can't, and backing their national license application.
"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."
In March, Anthony and Tannine were amomg 16 familes who lobbied Downing Street on the issue.
Their visit coincided with an inquiry by the Health and Social Care Committee into the availability of access to medicinal cannabis.
Current guidlines cite concerns over the effect of exposure to THC on the developing brain of children.