NHS backlog: "I thought I had this ticking time bomb in my arm"
How COVID-related delays and mishaps contributed to a woman's nearly 2-year-long wait for a blood clot diagnosis
It took 22 months of delays and hurdles, influenced by COVID-related pressures on the NHS, for Emily Davies - from Oxted, in Surrey - to be correctly diagnosed after suffering a deep vein thrombosis in her right arm in 2018.
Davies, aged 36, first noticed pain and swelling in her arm after practicing yoga while playing with her niece. A trip to the doctor a few days later, revealed she had deep vein thrombosis and was 'lucky to be alive'.
She was prescribed with six months of blood thinners and referred to the hospital for blood tests, ultrasounds and an X-Ray.
"I was signed off in January 2019 with what I now know, was a misdiagnosis. Doctors told me it was deep vein thrombosis that was probably caused by the contraceptive pill and 'excessive weight bearing on the arms' from yoga."
Once off the blood thinners, Emily Davies continued to notice her arm was swollen and discoloured, and was still in a lot of pain.
"I was noticing that my right arm and hand kept swelling up when I was going for runs. Anything kind of above 10k, I was noticing that it was changing in colour, and was swelling, which is obviously a sign of thrombosis."
In February 2020, while a global pandemic was brewing, she returned to her GP surgery and was referred back to the hospital.
"I was supposed to have a face to face appointment but because of COVID this appointment got initially pushed back, and then it got pushed back to a phone consultation. I had pretty visible symptoms and it was something that I needed to show someone, so having to explain that to someone on the phone was kind of the first hurdle."
Davies was told she would need an MRI scan but that the waiting time was going to be at least six months. In August 2020, she had the MRI scan but what followed were another four long months of calls and emails chasing results.
"I don't know why it took so long, but I remember ringing the hospital in floods of tears on the phone because I was just so frustrated and concerned I might have this ticking time bomb in my arm."
"The thing that I found or what I perceived to be the biggest problem in my process personally was the backlog of admin that they NHS staff must have been struggling with, because the lack of being able to ring someone up and find out about my results, or find out about my condition or the process..."
Emily Davies later found out that the results had been sent to her GP surgery, however, over calls she was told that staff were prioritising the treatment of COVID patients and cancer treatments, and her case wasn't a priority.
"I found out that the results had been sent to my doctor surgery and were just sitting there. So even my doctor surgery could have rang me up and told me, but they didn't. And I remember ringing them up eventually, and they were like 'We'll probably have these results, but we have to go and find them' - it felt like I was being a nuisance because I wasn't ringing up about an urgent COVID situation. Or at that point, I had also been told 'you're not a cancer patient' and so you're not a priority."
When eventually she was given her results in December 2020, Emily was also told that she was given the wrong MRI scan and would need another one.
"Obviously that was devastating. They cocked up and gave me the wrong scan so I had to have another one in February 2021. At that time, they also realised that they misdiagnosed what I needed, and what I actually needed to do was to be referred to the cardiovascular department because the scan I needed was an X-Ray with contrasting white blood, which is called a venogram, and I finally had that in May 2021."
In June 2021, Emily was diagnosed with Subclavian Vein Thrombosis (also known as Paget-Schroetter syndrome) - a rare syndrome that is most common with baseball pitchers and tennis players. It happens when a blood clot forms in the subclavian vein, and it can be a potentially life-threatening condition if not treated in a timely manner.
She's currently undergoing sports therapy to rehabilitate her right arm, and strengthening muscle around her back.
"The therapy that I have is to basically manage the condition. I've Thoracic Outlet Syndrome, which is an anatomical defect where my collarbone and my first rib are too close together. A lot of people can have that but if they're not working the muscles in that area too much, they might go through their whole life and never be affected by a subclavian vein thrombosis, which is what I had."
The government's under pressure to address NHS staff shortages and the NHS backlog which is at its highest since records began, in August 2007. As of December 2021, almost 6 million patients were on the waiting list for non-urgent hospital treatment - many of who are in pain.
In October 2021, Chancellor Rishi Sunak announced an extra £5.9bn to clear the NHS backlog, in addition to £5.4bn promised in September 2021. However, according to an independent report by The Health Foundation, around £16.8bn would be needed to clear the backlog and treat the expected rise in patients needing NHS hospital care.
Emily Davies is just one of many people affected by delays and mistakes seen as a result of the impact of the coronavirus pandemic on the NHS.
"I feel that because of COVID I just got lost in paperwork, and there were so many mishaps. I think being given the wrong scans was probably something to do with the stress of people making an administrative mistake at the hospital."
"I think there's an element of fear with COVID, it's almost like everything else is insignificant. But, you know, in my world, actually, the most important thing to me at that time was knowing whether I was at risk of having another deep vein thrombosis, and if therefore, I was at risk of having either a heart attack or stroke or a pulmonary embolism."
"The emotional and psychological stress that it caused, I can't even begin to describe. My condition is an anatomical condition, but it's also related to stress, because I carry a lot of tension in my neck and my shoulder. So if I'm tense in that area, I will be restraining that vein. But the release that I got in June 2021, when I finally got that official diagnosis and knew what it was, I think I then went for about four months without feeling any pain. I genuinely think that was due to the stress."
"It ate into my life. It took over my life for many, many months, if not more than a year. It was extremely stressful, extremely painful. Looking back now, I've probably got more understanding for what the NHS were going through. And, you know, honestly, I know that that they must have been having a horrendous time on the phone, dealing with the admin and dealing with different people. But I think, specifically, in my case, I don't really see why it had to be so complicated, and I don't really see why I got so ignored. I feel like someone could have just looked after me, you know?"