NICOR newsletter July 2023 edition
Welcome to NICOR’s July newsletter. As we approach the summer months, we have a lot to be proud of in the first quarter of…Read More
Including quotes from patient experiences, some patients have asked to remain anonymous and some patients are happy for their first name to be used.
“My father had an aortic dissection in February 2022. An ambulance was not available. He was in absolute agony with heart attack symptoms, and I had to drive from my house to his home and have him physically lifted into my car to take him to the local hospital. This was very traumatic for all involved.
“He was monitored for several hours in A&E and then taken off all heart monitors because it was determined he probably had an ulcer… His heart was not monitored until the next morning when he was surrounded by doctors because he had an aortic dissection.
“On discharge a 24-hour blood pressure monitoring was not arranged within 14 days as per the discharge letter and I had to go to the hospital to arrange this. A CT scan was to be done within a month and this was not arranged. Again, I had to make efforts to arrange this. My dad phoned the GP to ask for advice and a GP did not speak to him and instead a receptionist told him to go to A&E which would have been completely unnecessary. The GP is almost impossible to contact…”
“As a survivor of a life-threatening aortic dissection, I rely on annual imaging and cardiology follow-up appointments at my NHS specialist aortic centre to monitor my condition and keep me safe (and alive). This usually works well, but during COVID-19 it all fell apart. In 2022, I thought it would all start working again, but I did not receive my annual invitation for a CT scan of my aorta in September.
“When I inquired, I was told that I had been discharged, because I had failed to keep an appointment (which I never received). My follow-up cardiology appointment in December was also cancelled (by the hospital). I immediately contacted my cardiologist, who apologised profusely and sorted it all out very quickly. I am reassured that my care is now back on track. I wonder if there has been an increase in Aortic patients ‘lost to follow-up’ since COVID-19?”
“I had an extensive dissected aorta and collapsed unconscious in a cab late evening on a Sunday in July 2022. I came round sometime later after having emergency open heart surgery to repair my aorta and spent two weeks in hospital where the care was first class.
“I’ve had nothing but a positive experience both from my GP practice as well as the hospital. I’m having six-monthly scans and appointments, and these are communicated by email and mobile phone. I’ve also always had detailed reports that also go to my GP.
“I’ve been able to email the consultant’s secretary and had very quick responses from the consultant.
“On one occasion I had a pain in my shoulder and contacted the secretary. A registrar called me back and said I really needed to come into A&E and have a scan. I arrived in and was sent straight through for the scan.
“Another time the consultant sent a long letter to my dentist justifying why I needed antibiotics when having dental work done.
“My GP practice has also been excellent, seeing me on the day when I have needed it. I was also referred for genetic testing and I was seen after a couple of months. (My grandfather died of a dissection, so this is now being followed up).
“I am aware of the problems within the NHS, but my personal experience is excellent.”
Phil was diagnosed with heart valve disease after collapsing at work and being rushed to hospital. His valve disease became severe in 2021, and he was scheduled to be treated in August. However, workforce issues at his treating centre meant his treatment was delayed to October, and then November, before he was eventually treated in December. His symptoms had deteriorated, and he was having to take unpaid leave from work to undergo treatment. The delays led to a more complex surgery, a longer recovery time and an extended stay in hospital – all while Phil was on unpaid leave, placing a huge toll on his family finances.
Phil said: “I just needed to be treated. I knew once I was treated, I could get back to my life, and wouldn’t be a strain on the NHS anymore. The strain on my and my wife’s mental health during the delays was like nothing I’ve experienced. This is my heart; it is a serious thing and I needed to be treated. It felt like a ticking timebomb.”
Patricia was diagnosed with a bicuspid valve as a child and had been monitored regularly throughout her life. She was advised in May 2022 that her valve disease had reached a critical stage and she required surgery. After being told it would be a matter of weeks, which turned into months, before she was eventually treated in February 2023.
Patricia said: “In the nine months from my initial appointment where I was told my severe aortic stenosis needed to be treated to when I was eventually treated, I felt like I was in lockdown again. My life just stopped. I know severe aortic stenosis has bad outcomes after two years, so the further I got into that window the more terrifying it was. The mental trauma of that time was so severe, you just live it all day every day.”