Heartbeat: Parents’ meningitis experience prompts better sharing of information

July 29, 2019

Each month a patient or relative is invited to share their story of our care at our public Trust board meetings. In July, the Board meeting was held at The Nishkam Centre on Soho Road, where Board members were introduced to Simon Carswell, a local dad, whose six week old daughter Aubree became seriously ill and was treated at Sandwell Hospital.

Simon explained how his daughter Aubree had become very unwell overnight and, to get help, he and his partner Kirstie called NHS 111 who were able to arrange an emergency appointment at Sandwell Hospital. Aubrey was assessed and moved swiftly to the paediatric ward at Sandwell for further investigations. On arrival they were taken to a bay and several doctors and nurses attended within seconds.

“At that point it turned into carnage from my perspective,” said Simon. “Fear attacked me and Kirstie.  We didn’t know what was going on. I was brought over to try and calm Aubree down. Kirstie had a doctor with her who was trying to update her and I was trying to comfort Aubree. I heard works like ‘sepsis’ and we were being asked lots of questions. We were really scared.

“Things settled after five to ten minutes – it felt like a lifetime. She was given antibiotics and put on a monitor. We were taken to Lyndon 1 to our own cubicle and things settled a bit. I have never experienced anything like that before. I don’t think I ever worried about anything until that point.

“The feedback I can provide is not relating to the care she received – the care was spot on – but instead it was about how the information was shared with us. She had lots of tests and we would be told for instance that there would be a result in 24 hours. Once 24 hours had passed we weren’t always informed of the result and we were left in limbo. Every second that passed 24 hours we became more and more concerned.

“There was confusion about where some of the tests went and when the results would be back. We always had to ask people what the test results were and what was going on. We stayed every night and were up almost all of the time waiting for some form of indication as to what was going on. Aubree improved and was discharged and we subsequently found out that she had viral meningitis. I can’t fault the time and attention the staff gave us but it was frightening not knowing what was going on.”

Paula Gardner, Chief Nurse, thanked Simon for sharing his story, “I agree that healthcare professionals need to be pro-active and communicate continually to parents and carers. We need to take particular care with people whose first language isn’t English. The quality listening time that we have in place in some wards is a really helpful opportunity for relatives to meet with the clinicians and find out about the care plan for their loved one.”

Toby Lewis, Chief Executive, asked Simon whether it would have been helpful to have fixed points during the day where you could find out information. Simon felt that it would have been useful, saying:  “The information would come 90% of the time when the doctors did their rounds so we gave up asking questions we just waited for those moments. It would have been good to have other opportunities.”