“Freddie was sports obsessed, he loved music and he loved life.”
Emma Parkes spoke with both passion and pride as she begins to describe her wonderful son, Freddie. A fantastic sportsman, Freddie Kemp made a huge impact on his local sports community in Cornwall, excelling at power chair football and even setting up Cornwall’s first-ever boccia club. Freddie won widespread recognition in the Cornwall Sports Awards 2014, when he was named disabled sports coach of the year, and also bagged an award for disability club of the year. Emma continued: “He was such good fun and mad as a box of frogs! He was just a lovely young man.”
However, life wasn’t easy for Freddie, who was diagnosed with Duchenne muscular dystrophy shortly before his fifth birthday.
Duchenne muscular dystrophy is a severe muscle-wasting condition that affects around 2,500 boys and young men in the UK.
The genetic condition is caused by a mutation in the dystrophin gene, located in the X chromosome. As girls have two X chromosomes, most are naturally protected against the condition, unlike boys who only have one.
Symptoms of the condition usually begin to surface between the ages of one and three years of age and may include starting to walk later than other children, falling more often, or finding it difficult to run or jump.
As a progressive condition, muscles will gradually start to deteriorate over time, and many boys - including Freddie - will find themselves relying on a wheelchair and specialist equipment.
Due to severe muscle weakness, many people also have poor respiratory health, as they are unable to clear their lungs effectively through coughing.
Emma explained: “We were trying to get Freddie a cough assist machine from the age of 17 because chest infections would knock him for six. He wouldn’t get them very often but when he did they would really set him back.”
Freddie had access to a cough assist machine at his residential college, but once he returned home, securing this life-saving piece of equipment became an impossible battle.
“By the time he reached adult health services it was difficult - you didn’t get one without a battle”, Emma said.
“We knew that there were some not being used but people just couldn’t agree on who would have to pay for it.
“It’s just pathetic when you consider the grander scheme of it all. I know there were families who offered to pay for it themselves but they just didn’t listen and they’re still not listening now.”
“He was given a variety of excuses and reasons as to why he could not have one, ranging from plain ‘no’, to no one agreeing on who would do the commissioning.”
Finally, an Individual Funding Request to Cornwall Clinical Commissioning Group was applied for, but Freddie had already taken a turn for the worse.
Emma continued: “While he waited for this he started to develop a chest infection in October and generally felt unwell. Between us as a family we called his doctors and respiratory consultant and anyone else we could think of asking why he had not got a cough assist machine yet.
“We were finally told it would be ordered, but by this point Freddie had really deteriorated. By the end of October he barely left his bed as he was struggling to breathe and was using his bipap machine almost constantly just to keep him comfortable as his breathing was so bad.”
Emma began to fear the worst when Freddie stopped being his usual active self.
“He was always out and about”, she said. “He loved being around people and doing things, so I knew it wasn’t great when he started to cancel going places.
“Things started to get very bad. I was on the phone to the GP, physio, respiratory care just keeping on trying to get this equipment.
“When you know that the equipment is there but people are arguing over who is going to pay for it and there’s someone really ill who needs it you start to lose patience.”
In the middle of November 2014, Freddie finally received a loan cough assist machine. As soon as his lungs were cleared it was discovered that he had been suffering from a serious infection in his lungs, which had gone undetected due to Freddie’s inability to cough.
Just ten days later, on 27th November 2014, Freddie died, aged 21.
“You shouldn’t have to battle for it when it comes to the point when you’re battling for a loved one’s life,” Emma said.
“You’re busy looking after them, you’re scared you’re going to lose that person but at the same time you’re battling for a piece of equipment as well.
“It doesn’t matter how old your child is. We should never have had to spend those last few weeks of Freddie’s life with him not being able to breathe. It’s a right everyone should have - the right to breathe.“
Following her son’s death, Emma embarked on a campaign to ensure anyone in need can get access to cough assist machines.
By telling Freddie’s story, Emma hopes to raise awareness about how important these machines are, and the impact they can have on a person’s life.
Emma said: “We’re not blaming the lack of the machine but Freddie would have had a better quality of life and potentially lived longer if he had it a long time prior to that.
“Early intervention works. It’s been proven that it would decrease the amount of chest infections, increase the quality of life and the longevity. At the moment it’s a postcode lottery still on medical equipment. It’s crazy.“
Now, Emma is joining national charity Muscular Dystrophy UK in calling for cough assist machines to become a standard piece of equipment for CCGs (Clinical Commissioning Groups) across the country.
She said: “I went to meet the health minister with another parent and a man who had lost his sister. People nod and say the right things but I’m not convinced that the changes being made are enough.”
Since Freddie’s death, Kernow Clinical Commissioning Group, which covers the Cornwall and the Scilly Isles, has introduced a new policy that has seen a eight cough assist machines being made available, two of which were out with patients in the community at the time of writing.
Progress has also been made nationally as the number of CCGs committed to the funding of these machines has risen from just four per cent to 11%.
However, Bobby Ancil, neuromuscular outreach manager at Muscular Dystrophy UK, believes much more still needs to be done.
He said: “While ventilators are well known, cough assist machines are not – many CCGs don’t even realise that they are responsible for providing them. Without the machines, people who struggle to cough, including some of those living with muscular dystrophy, are at a much higher risk of chest infections and blocked airways. The repercussions are scary, dangerous and costly.
“The machines cost around £5,000, which is about the same as two days in intensive care, a common destination for someone with muscular dystrophy who gets a chest infection. All CCGs need to establish policies to provide the machines quickly when they are needed – only a fraction currently have such rules in place, and any delay can have tragic consequences.”
Determined to inspire change for other people like Freddie, Emma is continuing her campaign so people just like Freddie can be given the opportunity to clear their lungs and reduce the risk of life-threatening infection.
“These machines are vitally needed,” she argued.
“The long-term benefits of having them early on are huge for people who have life-limiting respiratory conditions. If we can keep their chests clear we’re not going to get to that point where they need medical attention: no GP appointments, no hospital visits - how is that not cost-effective?
“You just can’t put a price on someone’s health or life.”