Former London Welsh RFC star who suffered ‘very severe’ heart failure helped by experimental drug at Blackpool Victoria Hospital

Robbie Jones, who played for London Welsh RFC from 1984 until 1997, was diagnosed with dilated cardiomyopathy – a type of heart disease which causes the muscles of the heart to weaken, making it harder for the organ to pump blood to the rest of the body – in June 2018.

The 56-year-old, who lives on West Bank Avenue, Lytham, said: “I couldn’t breathe. My lungs were full of fluid, which I only found out after I was diagnosed. I had shortness of breath, a persistent cough, and day-to-day tasks were taking a lot of time because I had no energy.

"I woke up choking in the early hours of the morning and ended up calling NHS 111, and they advised I get to hospital straight away. My wife ended up taking me to Blackpool Victoria Hospital, where I stayed for 12 days.

"When they initally told me I’d had a heart attack, I just laughed. I thought there was no way it could be true.”

Tests showed Robbie’s ejection fraction – a measurement of how much blood is pumped out by the left ventricle of the heart with each beat – had dropped to just 18 per cent.

“I was in very severe heart failure,” he said. “I was in a bad way, and it really was a terrible shock, having been so fit before all this happened. Having never been really ill before, I probably didn’t realise just how sick I was.”

Robbie, a dad-of-two who used to be a P.E. teacher at AKS Lytham, underwent treatment to remove the fluid from his lungs and was put on medication to treat his heart condition.

Two weeks after leaving hospital, he received a phone call from a nurse from Blackpool Teaching Hospitals NHS Foundation Trust’s clinical research centre who asked if he would like to take part in a trial for Omecamtiv mecarbil.

The new cardiac-specific drug is currently being studied as a potential treatment for patients suffering from heart failure with reduced EF.

Robbie said: “My family didn’t want me to do it initially. There were concerns about the trial because it involved taking a medication, but it was phase three trial, which gave me a bit more confidence.”

His condition began to improve soon after starting the trial at the hospital’s National Institute for Health and Care Research (NIHR) patient recruitment centre, which has treated more than 870 patients since opening 18 months ago. His EF had risen to 35 per cent by the end of the trial in 2020, and has continued to rise to around 48 per cent.

He said: “I didnt know whether I was on the placebo or on the actual medication, but I was on a range of other cardiac medictions as well, so it would be wrong of me to say the improvements were purely because of the research medication, although I think it probably did have an impact, in conjunction with the other medication I’m on.

“Gradually I have had more energy. I was able to walk further, and I got involved with the cardiac rehabilitation programme, which helped massively. This was basically a controlled exercise programme, initially done with a physiotherapist and nurse, and then extended to the YMCA Lytham, which I did for about 18 months. It’s difficult to quantify just how much of a difference that made for me.”

He added: “The fact that I’m no longer working is quite significant and I had to come to terms with it. I used to do a lot of running, marathons and the Great North Run, but I’m not allowed to run any more. Being told you can’t do something is difficult.

"While I enjoy a glass of beer or wine every now and then, consumption of alcol has reduced significantly. When I buy things in the shop, I make sure they are of a lower salt content.

“I’m able to do things like go and walk the dog, which is great. While I’m still limited in what I can do, I’m managing the condition much better. I still have good and bad days and you have to pick your battles.”

Robbie is now looking at getting involved in other trials being held by the NIHR and the Blackpool Trust, including one that will examine the effects of cardiac medication on patients’ kidneys.

He said: “I found it really comforting, how often I was seen and assessed, and all the screening that took place.

“I believe it really helped me psychologically to deal with all of this. As a result, I’m very much an advocate of medical trials.

"That’s why I am supporting my cardiologist in reserach trials, encouraging people to be involved, because I think they’re so important.

“I’ve recently been put onto a new medication which is regarded as one of the top medications for cardiomyopathy, and that sort of thing won't happen unless these trials take place, in the same way we wouldn’t have had vaccines for Covid-19 if the trials hadn’t taken place. They will make the patient experience better in the long run.”

“I’m no longer on the medication I was on for the trial because its not yet licenced in the UK, but the reports that came out were very favourable, very positive.

“In many ways I regard myself as being fortunate that I’ve been diagnosed with a condition, and the hospital and Cardiomyopahy UK have been fantastic in the support they’ve given.”