Alex had developed a severe and debilitating headache, and felt so ill and weak he was unable to eat properly or go out – but reception staff had failed to realise that the DJ’s symptoms needed urgent evaluation, say his family
At 25, Alex had his whole life ahead of him. He was finding success as a DJ, having played in Croatia and just booked a trip to perform in America.
But five years ago, he started coming down with something. Alex had developed a severe and debilitating headache, and felt so ill and weak he was unable to eat properly or go out.
He tried going to his GP, and was given an appointment in three weeks time. By the time that appointment came around, Alex had already been dead for a week after contracting meningitis.
Alex Theodossiadis was raised in Hale and had been a student at Manchester Grammar School. He had moved to Leeds and was enjoying life working in the Tribe Records shop, and developing his career as a DJ.
In January 2020, Alex started to complain of earache, suspecting sinusitis, his mum Professor Sue Astley Theodossiadis told the Manchester Evening News. Things grew worse, as he started with a ‘horrible headache’, ‘wasn’t eating’, and eventually ‘couldn’t get out of bed’.
Alex tried to get a GP appointment, but reception staff had failed to realise that the DJ’s symptoms needed urgent evaluation and offered him an appointment in three weeks, say his family.
Alex’s debilitating headache, and feeling so weak he was unable to eat properly or go out, can be symptoms of meningitis in which the three thin layers of tissue that cover and protect the brain and spinal cord become inflamed, usually by an infection.
Sue, who is a medical imaging expert at the University of Manchester, told of medical notes that were revealed at the inquest into Alex’s death: “We strongly feel Alex’s care could have been better, and that his death might have been preventable.
“He was told he had to wait for three weeks for a GP appointment. But after becoming progressively unwell, he went to a walk-in clinic where the first words written by the nurse at the appointment were ‘cough and cold’ symptoms, despite his most concerning symptoms including a new, debilitating headache.
“He was so ill he couldn’t even climb the stairs to his bedroom, but the duration and severity of his symptoms wasn’t discussed at the appointment. It’s likely that his inexperience in presenting his symptoms contributed to a presumption of a flu type viral infection; he left the surgery with painkillers for the headache.”
She added: “The coroner picked up the need for GP receptionists to ask questions and help people to be clearer about their symptoms so they can triage them more appropriately to get urgent appointments.”
Like many people in their 20s who live independently, said his mum, Alex ‘was telling us and a lot of his friends slightly different bits’ of the ‘puzzle’.
‘No one was collecting that overall picture’, said his mum. “When it came to the inquest, you could see how ill he’d really been,” she added.
A record of his Facebook messages to his friends and family, compiled by Alex’s mother, reveals the heartbreaking progression of the symptoms caused by the disease. After posting one message to a friend in Germany which said he was ‘in and out of naps’, another friend took him to hospital.
Alex was taken by a friend to Leeds General Infirmary and then transferred across the city to St James’ Hospital. But while there, he fell from his hospital bed and banged his head on the floor.
Sue says that, before the fall, he could recognise his family and there was no need for extreme intervention like neurosurgery. Afterwards, he couldn’t breathe on his own and the doctors could do little more for him.
“With the extra injury, the neurosurgery wasn’t even an option anymore,” said Alex’s mum. “It was a case of not a lot they could do for him.
“Thank god it happened before Covid, they kept him on a ventilator for three days. It gave us time to understand what was going on.”
Alex’s family were moved by the incredible moment more than 50 friends from across the world arrived at the hospital in Alex’s final hours. They camped out in the hospital cafe, taking it in turns to hold vigil at his bedside, said his mum.
Alex died three days after being first taken to hospital, and his funeral came just one day before the coronavirus lockdown in 2020.
Five years on, mum Sue is wondering where a life in music would have taken him – as she grapples with the turmoil of her youngest child now being older than Alex was at the time of his death.
“Alex was very single-minded in what he wanted to do, it’s not an easy life but he found his circle of people,” said Sue. “Alex was interested in politics, passionate about environmental issues, and was very socially aware. He was such a good-hearted person.
“We went to see him play at Antwerp Mansion once, we had about 10 times as many clothes on as everybody else. One of the doorstaff said ‘you must be Alex’s parents’, and we were so proud.
“It just feels like another world, it’s all photographs now. We shared a lot of happy times.”
Now, the professor is determined to make change.
Alex’s mum has been working with the charities Meningitis Now and the PSHE Association to develop teaching resources for schools in a bid to prevent others from experiencing the same fate.
They consist of two lessons which teach 16 to 18-year-olds how to recognise serious illness in themselves and others, and to have the confidence and knowledge to navigate the healthcare system.
One section includes role playing on how to get a doctor’s appointment.
The pack was part-funded by the Faculty of Biology, Medicine and Health at The University of Manchester, after the professor pitched her idea through a ‘Dragon’s Den’ style event at her workplace, and part-funded by Meningitis Now.
“However educated you are, when going to the doctors it’s difficult to express yourself when you’re not feeling 100% yourself,” explained the professor.
“The only real times he’d been to the doctor was with me when he’d needed a lift there, he’d almost always been with a parent in front of a medical professional. He hadn’t had much independent experience of health care, and most visits had been because of sports injuries.
“He could well have said to staff at the walk-in centre that he had a migraine. If he’d gone into his other symptoms like I’ve been so ill I can’t get out of bed and I‘ve got this severe headache.”
The resource pack aims to help young people recognise serious illness in themselves and others, and to have the confidence and knowledge to navigate the healthcare system. She says all healthcare professionals, including receptionists, need to be aware of the difficulties young people have in explaining themselves.
“Young people need an education on how to get on the NHS app at 16, how to book a doctor’s appointment, when it may be urgent, when to press for that appointment, how to have a discussion with a medical professional, what to do if you can’t get an appointment. There’s so much false information on social media, young people need an education on how to find reliable information,” said Sue.
“And they don’t just need this about meningitis – it needs to be across health care and how to recognise serious illnesses. That includes mental health, sexual health. They need to know how to recognise it in themselves and other young people.
“If a young person gets ill at a festival, it is often not recognised and assumed to be related to drugs or alcohol.
“I think young people are very socially aware and can be worried about taking an appointment from someone else who they think is more important than them. Alex was exactly the kind of person who would have thought he wouldn’t have the right to be at the top of the queue before it’s too late.”
Alex’s mum continued: “One of the sad things about the position I’m in is that I’m a member of a number of Facebook groups for people bereaved by meningitis, and parents of children who have died. It’s a club you don’t want to belong to.
“With this, I hope something positive can come from something negative.”