IT IS often said that you can’t put a price on your family’s health and no one knows that more than John Caudwell. When his then 10-year-old son Rufus started experiencing panic attacks in 2005, John initially put it down to puberty.
But when Rufus’s symptoms grew to include a fear of vomiting, anxiety, signs of depression and agoraphobia – to such a degree that he didn’t leave the four walls of his family home for almost a decade – John knew something was seriously wrong.
“When I describe his symptoms to people, they assume they developed gradually but that wasn’t the case at all,” says John, the billionaire who founded Phones 4u in 1986 and sold it 20 years later.
“It wasn’t a slow change. He became a different person almost overnight. He went from being an amazingly confident, charismatic, sometimes bordering on cocky, 10-year-old lad who would stand on stage at one of my corporate events in a tux and bow-tie and sing to 2,000 people, to collapsing overnight and rarely leaving his room.
“We had no idea why this massive change had taken place in our boy. We knew we had a fight on our hands. We just didn’t know what we were fighting.”
It would be 10 frustrating years before John, 65, who lives in Mayfair, London, would find out the underlying cause of not only his son’s drastic decline but eventually that of 11 members of his family – including John himself.
“Rufus’s symptoms baffled the NHS,” says John, who fortunately had the financial backing to explore private avenues.
In the following months, he made appointments with psychologists, psychotherapists and psychiatrists and flew in specialists from all over the world but they also failed to find an underlying cause.
It was only when one specialist suggested that Rufus could be suffering from Lyme disease that a blood sample was sent to a private laboratory in Augsburg, Germany. At the start of 2015 Rufus – then aged 20 – finally received the diagnosis he had been waiting for.
“I had never heard of Lyme disease,” John says.
“The diagnosis came as a huge relief because we assumed it was easily treated. Once we got that diagnosis, everything clicked into place.”
His daughters Rebekah, now 38, and Libby, 30, along with his ex-wife Kathryn, 62, had also been unwell for a number of years so John sent samples of their blood to be tested and they also came back positive.
“Due to suffering bouts of chronic fatigue I decided to get tested and sure enough, I had it too.”
Out of the 12 members of John’s family who have been tested for Lyme disease, 11 samples came back positive. In Britain there are about 3,000 reported cases a year but the real figure is thought to be several times that.
Lyme disease is a bacterial infection that can be spread to humans by infected ticks. It’s easier to treat, usually with a threeweek course of antibiotics, if it’s diagnosed early enough.
Early symptoms include a circular red skin rash around a tick bite, which can appear up to three months after being bitten and can resemble a bullseye. However, other symptoms, including high temperatures, headaches, tiredness and muscle and joint pain, can often be confused with flu, which can lead to a delay in diagnosis.
If left untreated, some sufferers can develop more severe symptoms months later – especially if treatment is delayed – including pain and swelling in the joints, nerve problems, trouble with memory or concentration and even heart problems.
Two types of blood test are available but are not always accurate in the early stages. John says that doctors still don’t know how 11 members of his family contracted the disease.
“In my opinion, the NHS is somewhere near to useless when it comes to diagnosing Lyme disease,” he says.
“First your GP needs to be able to spot the symptoms, which can present between three days to three months. Then you will undergo a blood test, which may come back negative even if you have Lyme.”
In response, a Department of Health and Social Care spokesman says: “We commissioned a thorough review into the disease in December 2017 and through Public Health England hold regular GP training days on the subject.”
When John started to post on social media about his family’s own struggles for a diagnosis, he received “hundreds of messages a day” from people across the world.
“It made me a vigilante,” he says.
“I became determined to take up the mantle to fight for a diagnosis and one day hopefully a cure.
“I was in the fortunate position to be able to fund private tests and fly in doctors from all across the world to treat my son. In total I spent about £2million on fighting for a diagnosis for him. Now I’m fighting for the families that can’t afford to do that.”
This is why, back in June, John pledged more than £1million of his own money to help fund Lyme disease research, on the condition that the NHS match his investment.
In a letter to the then health secretary Jeremy Hunt, John wrote: “The Government has woefully under-resourced this research for far too long. Thousands feel abandoned by the NHS. Victims of this devastating disease have been totally ignored by their health service, in what is tantamount to negligence and a dereliction of duty.”
The Daily Express can now reveal that the Department of Health has replied to John in a private letter and is reviewing his pledge, saying: “This proposal is currently being considered by staff as it raises some wider issues.
“In particular they are looking into possible research that may improve diagnostic testing for Lyme disease and will get back as soon as they have concluded this piece of work to see if there is a good way forward.”
But John remains sceptical about the Government’s commitment to fighting the disease.
“Successive governments have failed to take urgently needed action to help those suffering from the disease,” he says.
“Despite their response, so far the Department of Health has yet to commit to this urgent action. Until they do, thousands of Lyme patients will continue to feel abandoned and ignored by their health service and I will continue to fight for their right to effective, accessible treatment.
“There is light at the end of this tunnel for my family – the majority of whom have responded really well to antibiotics – but the same can’t always be said for people who are relying on the NHS.
“As well as taking antibiotics we completely overhauled our lifestyles from eating clean, organic food and massively reducing our sugar intake.”
Rufus, who is now 23, hasn’t been so lucky.
“He is currently living in Palo Alto, California, and is slowly responding to treatment under the supervision of doctors in America.”
John recently posted a picture of the two of them on his Instagram account, saying: “This morning he was the best that I have seen him in years.
“His sparkling eyes were back along with his slightly acerbic wit – often at my expense. Well, what are dads for?”
John is determined to keep fighting for his son and others who are affected by Lyme disease.
“I was in a fortuitous position to fight Lyme disease privately. I believe I can fully cure my family using my money and the resources but others aren’t so lucky, which is why they need the Government to fight for them.
“I took the relay baton four years ago. Now it’s the Government’s turn to run with it.
Originally published by Daily Express