Heartbreaking final messages from a young DJ who died from meningitis have been revealed to help other youngsters and parents recognise tell-tale signs.
Teenagers could be taught about symptoms of the life-threatening infection in memory of 25-year-old Alex Theodossiadis. He died five years ago after being unable to access a GP when reception staff failed to recognise how ill he was and only offered him an appointment in three weeks.
His mother Professor Sue Astley Theodossiadis is joining charities to highlight how a severe headache should not be dismissed as flu, particularly in the young. When Alex, from Leeds, saw the GP receptionist with a debilitating migraine, he had felt so ill and weak he was unable to eat properly or go out.
Prof Theodossiadis, a medical imaging expert at Manchester University, has worked with the charity Meningitis Now to design the meningitis awareness lesson to be taught in schools. She has released details of harrowing messages and calls Alex exchanged with friends and family as his condition deteriorated, before a final Facebook message saying he was “in and out of naps”.
Prof Theodossiadis said: “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.”
Meningitis sees the thin layers of tissue that cover and protect the brain and spinal cord become inflamed, usually by an infection. Symptoms also include fever, headache, vomiting, diarrhoea, confusion and drowsiness muscle pain, stomach cramps and fever with cold hands and feet, and a rash.
Alex was taken by a friend to Leeds General Infirmary and then transferred across the city to St James’ Hospital where he stopped breathing after falling from his hospital bed and banging his head on the floor.
Before he was hospitalised Sue, from Hale, Greater Manchester, had exchanged messages with her son in which it is clear he is very unwell but he says it is “flu and tonsillitis”.
January 9 – Facebook message to mum Sue
“I’ve been using these drops and my right ear has been totally blocked for 4 days now. Can’t hear anything at all. So I went to the GP but they can’t [see] me for free on the NHS till the end of the month. I’ve booked in for a private appointment tomorrow morning but its £70.”
January 16 – Facebook message to friend
“I’ve been the most ill I’ve been for YEARS. Tonsillitis and flu. Been eating a lot of codeine today. Sorry I lost my train of thought lol! Basically I felt like my body was about to fall apart then Marlon turned up with some codeine and I feel much better now.”
January 17 – Facebook message to friend
“And I’m ooook, feeling a bit better. My lips have chaffed so badly though they’re a proper dry mess.They split in the night and I woke up with blood all over my pillow.”
January 18 – Facebook message to friend
“Just getting to bed. Not much of a flu now just a tight chest and horrendous cough. Managed to play my set and found it quite enjoyable despite being sober and a bit poorly.”
January 18 – Facebook message to mum
“Been really ill this week and have struggled to eat anything the last few days. Have you any tips on how to get nourished. I just have like two bites then can’t do anymore.” Sue advised to eat soup for nourishment and see a GP, and asked if it was flu. Alex replied: “Yeah a combo of flu and tonsillitis.” Sue asked him to keep her posted.
January 19 – Facebook message to friend
“I’m feeling relatively normal again! Got some food cookin and watching the footy.”
January 20 – Facebook message to a friend
“Have you ever had a migraine? (have you been hit by one?) Yeah I thought I was clear and I’ve had the worst headache of all time since 3am lol. “Whhhhyyyy (painkillers/water doing nothing? Only brief respite.”
January 20 – Sue’s summary of phone calls
“Cleared the flu and tonsillitis. Then developed a really debilitating migraine at 3am”. We said that congestion could cause sinus pain and asked him where the pain was – “centre left temple”. We suggested trying a decongestant – “It’s still going on now”. We asked if he had a GP – “I signed up to the local one, there’s no appointments till the 10th Feb.” We advised trying the NHS 111 website and entering his symptoms on the grounds that it would advise him to see a GP and he could use that to bump him up the list, and to go to a pharmacy to seek help. He agreed. Half an hour later he said “Can I take aspirin?” and we advised he could, but stick to the instructions, also suggesting he take a decongestant.
January 20 – Facebook message to friend
“Have you ever had a migraine? I’m having one ATM and want it to stop more than anything in the world.”
January 23 – Facebook message exchange with friend
“Feeling a bit dodge still like.” There is an exchange where he gets the day of the week wrong. When corrected he replies: “Lying motionless all week sure isn’t great for sense of time.”
January 23 – Facebook message to friend
“I’m really struggling to eat atm. I went like four days barely eating and my stomach is just churning up anything I put in there. When asked if he was vomiting he replied: “Nah I got to the yellow bile stage retching then been teetering at the edge of that for like three days.”
January 24 – Facebook message to mum
“Am still incredibly ill. I went to the walk-in doctors just now. They’ve sent me to get some stronger medicine. Naproxen.”
January 24 – Facebook message to friend
“I’ve taken a turn for the worse (somehow) and have cancelled my set. Can’t believe how mentally sh** I’m feeling.”
January 24 – Facebook message to friend
“I’ve been incredibly afflicted with the flu and migraines this week and it shows no sign of letting up. I really don’t know how up for recording radio I am tbh so how would you feel about doing a two hour takeover? Aye I’ve cancelled tonight because I can barely stand up without getting a blinding headache.”
January 24 – Facebook message to friend
“Feeling worse if anything. These extra strong painkillers are doing fook all.”
January 25 – Facebook message to friend
“I’m in and out of naps.”
After posting this final message to a friend in Germany another friend took Alex to hospital, where he died three days later.
Prof Theodossiadis said: “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. This resource pack now draws on Alex’s experience to help young people recognise serious illness in themselves and others, and to have the confidence and knowledge to navigate the healthcare system.
“Until the time of his illness, Alex’s interactions with the NHS had mainly been for sports injuries, and many of those were when he was young, so I was there with him. My hope is that this will help prevent others dying in a similar way. All healthcare professionals, including receptionists, need to be aware of the difficulties young people have in explaining themselves. The resources also highlight when to seek help urgently, either for yourself or for someone else”
Dr Tom Nutt, director at Meningitis Now, said: “We welcome this valuable resource and thank Alex’s mother Sue for her tireless efforts to raise awareness and fight back against the disease that sadly took her son’s life. Young people are an at-risk group of meningitis and research tells us that up to a quarter of 15 to 24-year-olds carry the bacteria that cause meningococcal meningitis in the back of their throats, compared with one in 10 of the general population.
“Common complaints such as a hangover and Freshers’ Flu are often given as reasons for a person not feeling too well – but we are asking young people not to simply assume this is the case. A headache and fever are also common signs of meningitis.
“It’s important that young people have the confidence and the knowledge to understand what may be happening to them when they are unwell and to know when to seek medical help or the help of others. This means taking a few minutes to learn the signs and symptoms of meningitis and septicaemia, and to know that it’s OK to seek urgent medical help if you are concerned that someone maybe unwell and getting worse. This new resource will give young people the knowledge and confidence on how best to go about this.”
Leeds Teaching Hospitals NHS Trust previously apologised for the standard of Alex’s care.