Halford couple launch petition and get 51,000 signatures in effort to boost heart failure services
GARETH Bayliss and his wife, Jen, have a dream – all they want is for Gareth to be given the chance to live longer so he can see his son grow up.
The young couple from Halford were dealt a life changing blow last August when Gareth, then 37, was diagnosed with heart failure due to a dilated cardiomyopathy – a condition that affects thousands across the UK and yet the health care provision for heart failure is not the same as that offered to those who have suffered heart attacks.
So concerned about the lack of national cardiac rehab care, Jen and Gareth launched a petition which initially attracted 823 signatures on 11th February as of yesterday the that figure now stands at 51,727 signatures.
Jen aged 33, told the Herald: “This is a condition that affects thousands across the UK, yet the support provided is not always equal. In south Warwickshire, where we live, cardiac rehabilitation is offered to patients who have suffered heart attacks. However, despite compelling evidence of its benefits for heart failure patients too, it’s not extended to them due to funding constraints or lack of perceived necessity. Often it depends on if you have the right post code.”
In their petition the couple are calling on all NHS Trusts across the UK to mandate the provision of cardiac rehabilitation services for all heart failure patients irrespective of their age or gender.
“It’s time we recognize that everyone deserves an equal chance at recovery and quality life after such diagnoses,” Jen said.
In Gareth’s case his condition leaves him extremely fatigued, unable to look after the couple’s son, Isaac, aged two, by himself because of the effects of his medication. Gareth also gets dizzy due to his low blood pressure and can black out if he gets up too quickly.
“My husband was diagnosed with dilated cardiomyopathy which has caused significant heart failure,” Jen said. “Since his diagnosis he has deteriorated in what he is able to do which has had a significant impact on our lives and our son’s life. There were no initial symptoms but we noticed Gareth had swelling in his ankles, legs and stomach. He was also severely breathless and fatigued. His heart is currently working at around 20 to 25 per cent and he is on several medications to maintain his heart function.
When we do things as a family the next day or so Gareth is extremely fatigued and can spend most of the day asleep.”
Gareth, now 38, describes how his condition affects everyday of his life and everything he does.
“I would say my day-to-day has to be much more planned out, no spur of the moment stuff. We have to think about where we are going and will there be adequate places for me to stop, sit down and take a break? Life has obviously slowed down as well, time has to be taken with everything I do, from the simplest things like standing up to more complicated things like helping out with cooking, household chores and playing with our son Isaac.
Fatigue is by far the worst, as it affects everything I do which then has a knock-on effect to my mental health.”
For Gareth everyday is a major health struggle but he’s eternally grateful to his wife and young son.
“Without Jen and Isaac around to support me through all this so far, I do believe I would have given up,” Gareth said. “They are the reason I keep getting up every morning and going again. It would be amazing to be able to take my son out and run around with him, take him to the park, have a kick about, he loves being outside and exploring and I would just love to be able to do more of that with him and not feel absolutely exhausted after five minutes.
“To other patients going through this I would say, never give up which I know is so cliche when it comes to health issues like this, but even the smallest victory can be a step forward. Your physical health may have taken a beating, but you can fight back. I know it’s a physical condition and I know that will be your focus but remember to take care of your mental health as well.”
His words of support and encouragement will resonate with other heart failure patients because he knows exactly what they are living with.
“You’re never alone. It’s sometimes difficult for others to understand what you’re going through. You carry grief for a life that you had before and you may feel constantly sorry for your inability to support your loved ones the way you used to, but those people are always by your side ready to help and support you when you are ready to let them. To the NHS I would say I still believe in what you do but there is always ways to be better and I feel that as in life, communication is key. If cardiac rehabilitation helps patients in other areas of the country, it helps everywhere in the country and it shouldn’t come down to where you live for you to get the best treatment and support to get you back on your feet.”
Gareth is a huge metal and rock fan and always has been and his favourite bands are, Black Sabbath, Iron Maiden, Trivium, Slipknot and Slayer.
Both he and Jen met at St Johns Ambulance in 2003 during an away camp and stayed friends and in contact throughout the years.
They go married on the 16th August 2019 at Holy Trinity Church, Stratford, and then held their reception at the Other Place where she Jen used to work at the RSC during 2013 to 2016.
Gareth was formerly a carer and Jen is currently a nursery assistant and the couple used to lead very active lives and all enjoyed long walks exploring with their son.
Warwick Hospital does offer cardiac rehabilitation but currently only for heart attack/cardiac arrest patients but not for heart failure patients. However, this could be about to change.
A spokesperson from South Warwickshire University NHS Foundation Trust said: “Our Trust currently provides a cardiac rehabilitation service for cardiac patients. However, following a successful bid, our cardiology department has recently secured 12 months of funding from NHSE to implement a heart failure rehabilitation service at our Trust. We are in the process of recruiting staff to deliver this service.
“Once operational, the Trust’s cardiology team will audit the new service’s success to support future funding.”
In response, Gareth’s said: “I am glad they have received funding for cardiac rehabilitation for heart failure patients. However, my concern is that it is only for 12 months and is a temporary solution to a lifelong problem. Heart failure has a huge impact on the lifespan of the patient and cardiac rehabilitation is something that will be needed throughout the patient’s life. This with medication and other intervention will prolong the patients’ lives.”
A glimmer of hope has emerged this month as Jen explains.
“Gareth now has cardiac rehabilitation starting in April at Atrium Health in Coventry. However, this was down to my mum - Rachel Cooper - who was a nurse at George Eliot and now an assistant lecturer at Coventry University who asked her colleagues if they knew anywhere for cardiac rehabilitation.
Thanks to my mum and Gareth’s heart failure nurse, Fiona Grinnell, he now has this.
We are so overwhelmed and grateful for each and everyone who has signed and shared the petition. My advice to anyone showing the following symptoms of breathlessness, exhaustion or ankle swelling is go to their GP.”
For more information and to sign the petition:
https://www.change.org/CardiacRehabilitionAccess
