Toddler's parents call for prescription payments for Cystic Fibrosis sufferers to be axed
A father from Shropshire is to trek all the way to Westminster to delivery a deeply personal petition to the Government.
Nick and his wife, Amber, are urging more people to sign the petition to ensure that all adults with cystic fibrosis (CF) in England are entitled to free prescriptions, in line with patients who have other chronic diseases.
They want to gain a government debate on the issue, and raise funds for the Cystic Fibrosis Trust because their two-year-old daughter Charlotte is living with the progressive disease.
RAF Squadron Leader, Nick, is based at RAF Shawbury and is originally from Wolverhampton.
When the exemption list for prescription payments was produced in 1968, children with CF weren’t expected to live to be adults – so CF wasn’t included. However, due to advances in treatments and new CF modulator therapies, there are now more adults than children living with the condition.
Charlotte's parents are determined to collect 100,000 signatures on the petition, which can be signed online at petition.parliament.uk/petitions/633794.
Nick said: "We first heard the words 'cystic fibrosis' from the health visitor at what we thought was a routine three week appointment. It was a moment so profoundly shocking that I am still hesitant to even drive past the health clinic where we were informed.
“It is a rare day that an individual is faced with information that truly ends life as they know it in almost every capacity. The life you thought your precious baby was going to lead is simply gone - it is a grief that I still cannot put into words in truth, but my wife and I are learning to accept it.”
Cystic fibrosis causes thick, sticky mucus to build up in the lungs and other organs. This leads to inflammation and constant infections, requiring regular clinic visits, a heavy burden of treatment and often frequent hospitalisations.
It is one of the few life-threatening, chronic conditions where adults are still required to pay for prescriptions, incurring a lifelong financial burden.
Under the current system, many people with CF will continue to incur an ongoing cost for their daily treatments through prescription charges, or will have to pay over £100 for the annual pre-payment certificate. One person with CF described the charges as "essentially paying to stay alive”.
“Charlotte has already had a pseudomonas infection,” said Nick. "For three months she had extra antibiotics and had to use her nebuliser twice daily, to clear the infection.
“It was a scary insight into how quickly the daily medications that people with cystic fibrosis need can increase. Many adults with the disease have to collect large boxes of medicines each month.”
Nick intends to symbolically hand the petition in personally to 10 Downing Street at the end of a planned fundraising event in September. He and fellow RAF serviceman Liam Summerfield , will take on the 'Trek for Charlie' challenge - a 265km hike, from Wolverhampton to Westminster between September 4-8.
Funds raised will benefit the Cystic Fibrosis Trust, which is also calling for a review of the outdated prescription charges exemption list. People can sponsor the trek at justgiving.com/fundraising/trek4charlie.
TV presenter and former Pop Idol runner-up Mark Rhodes has thrown his support behind the campaign.
A family friend, Mark has posted a video on his Instagram page appealing to his followers to get behind the petition. In the video Mark explains that those living with cystic fibrosis have a heavy burden of treatment, sometimes taking up to 30 tablets a day.
“It really seems crazy that only adults in England – not Scotland, Wales and Northern Ireland – have to pay for their prescriptions,” said Mark.
"Cystic fibrosis is one of the few life-threatening, chronic conditions where adults are still required to pay for prescriptions in England, incurring a lifelong financial burden.
It is thought 2,500 patients in England are using disability benefits to pay for prescriptions to get essentials like antibiotics, protein supplements, vitamins and salt tablets.