Family of nine-year-old campaigns against postcode lottery for FreeStyle Libre access

The family of a nine-year-old is campaigning to get access to the FreeStyle Libre on prescription as her CCG is not offering the technology.
The Libre is a flash glucose monitor and it means Carly Sullivan no longer has to prick her fingers up to 15 times a day to check her blood glucose levels. The Kingsnorth Primary School pupil does not have to leave the classroom anymore to prick her fingers.
Her family say the system has been transformational, but because her local Clinical Commissioning Group (CCG) – which is responsible for care outside of hospital – will not offer it on the NHS, they have had to resort to paying for the system themselves.
In November last year it was announced that local NHS organisations could prescribe the Libre, but NHS bosses in the county have not made it available, saying they are reviewing clinical evidence before making a decision.
Desperate to make Carly’s life easier, her family is paying £910 a year for the FreeStyle Libre, while other people living in different parts of the country are getting it prescribed on the NHS. The differences between which supplies are or are not prescribed by different CCGs is referred to as a postcode lottery.
Speaking to KentOnline, mum Kelli said: “Carly had to finger-prick around 14 to 15 times a day on top of four daily insulin injections. Her fingers are so tiny and sore that it was devastating.”
The 44-year-old, from Kingsnorth, Ashford, added: “I had to wake her up late at night to test her too as I was worried that she would fall into a coma if her sugars went too low. She was half asleep when I had to feed her biscuits because her sugar levels were borderline. Now I can just swipe the monitor and it also tells me the direction the levels are going – up or down.”
Carly’s grandfather is Gary Fagg, plays a prominent role in the local diabetes community as he is the chairman of the Paula Carr Diabetes Trust, located at the William Harvey hospital.
Charity Diabetes UK is calling on every CCG to offer the technology available because successful management of diabetes reduces the risk of diabetes complications occurring.
The charity said: “Diabetes UK is urging local Clinical Commissioning Groups across the county to make this new technology available as soon as possible. CCGs across Kent are presently not prescribing flash, while in neighbouring parts of Sussex such as Brighton and Hove are offering it for free on prescription.”
Matt Hopkins, Diabetes UK’s NHS Influencing Manager, said: “People’s health should not depend on an unfair postcode lottery. Everyone should be able to access the care and treatments necessary to safely manage their condition.”
“It is up to Kent’s eight individual CCGs to decide whether to make flash available locally. We urge them to implement this important technology as soon as possible so people can gain access to it.”
A spokesman representing the NHS in Kent responded by saying: “The NHS has a duty to make sure that all patients get the best support and treatment available and we have collectively made significant investments to improve treatment and education for people with diabetes.
“We also have a duty to ensure that NHS money is spent on items which are clinically effective. That is why we are in the process of reviewing the available evidence on FreeStyle Libre before making a decision on whether it should be made available locally on prescription. A decision will be made in due course.”