“In January 2020, my healthy 25-year-old son died from meningitis. He had previously had very little interaction with healthcare professionals – when he was at school most of his visits were for sports injuries and accompanied by me.
“Alex lived for electronic music – he was a DJ in Leeds, excited about an upcoming tour of the USA that had been booked. Over Christmas, we shopped for warm clothes and shoes for the trip. I dropped him off at the metro station in Altrincham at the end of December, as he was planning to celebrate the new year with friends in London.
“He told us in mid-January that he felt unwell with quite unspecific symptoms – he had been feeling rather sick as if he had the flu. A few days later he said he’d developed a migraine, and we advised him to see his GP, but when he tried to get an appointment, he was told there was nothing for three weeks. We suggested trying NHS 111 or a pharmacy.
Taken to A&E
“What we didn’t know is that he was also messaging some of his close friends – in Scotland, Germany and Leeds – and each of us had a different piece of the jigsaw. Putting these messages together gives a devastating picture of the development of serious illness, where Alex had a debilitating headache and was barely able to get out of bed.
“On the Saturday, he went to a walk-in clinic, but was assessed as having a decreased appetite, headache and flu symptoms. He was given painkillers for the headache but the following day he was taken to A&E by his flatmate Sam. At that point around lunchtime, he gave my name as next of kin.
“We arrived in the early afternoon and found him not able to speak but he knew who we were and held my hand. He looked bewildered. He was put on antibiotics, and a brain scan was assessed as being normal, and we were told that he was to be transferred to another hospital, to a medical ward as he didn’t need neurosurgery.
Kept on a ventilator
“When we heard he was being admitted we drove over in a hurry, so shortly before the transfer we left the hospital to get something to eat, with the intention of returning as soon as we had sorted ourselves out. But we were rung up in the evening and asked to return as his condition became worse.
“Alex was kept alive on a ventilator until Tuesday, and I remained with him throughout. During that time his friends started arriving at the hospital – I have no idea exactly how many there were, but there were a lot. Our younger son Seb also arrived. They sat in the coffee bar downstairs and came up to sit with him and with us, sharing with us the painful reality of knowing that Alex couldn’t survive, and that life support would be removed.
“We call them Alex’s ‘family of friends’. Somehow, with their support, we survived the following days, and the funeral. Afterwards they played music and danced – a beautiful celebration of his life.
Trust your instincts
“When it came to the crunch, Alex was not able to communicate the severity of his symptoms, or the urgency of his situation, either to the GP receptionist or at the walk-in clinic.
“There’s a need to educate people on meningitis and trusting their instincts about seeking medical help. We have begun to address this need with the help of Meningitis Now and in collaboration with the PSHE association.”
Symptoms of meningitis include fever, headache, vomiting, muscle pain, dislike of bright lights, and a stiff neck. In cases of septicaemia (which can occur simultaneously), a rash that does not fade under pressure may also appear.
If you have been affected by meningitis, contact the Meningitis Now nurse-led Helpline on 0808 80 10 388 or email helpline@meningitisnow.org.
Sue has kindly shared her story in support of our annual Ribbon Appeal.
Every year, we remember those who have lost their lives to meningitis by adorning our Tree of Remembrance at Gloucester Cathedral with ribbon dedications from our supporters. If you’d like to dedicate a ribbon to a loved one or learn more about our Ribbon appeal, you can visit our website.
Sue also shared her story on video which you can watch below.
