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Ben S's meningitis story

13th July 2020

In autumn 2019, Ben set off for the University of Portsmouth to follow his dream of joining the Navy, however during the first term he was struck down with meningococcal septicaemia. Mum, Arlene, tells his story

Ben S's meningitis story

"Ben has always wanted to go into the Navy and become a Warfare Officer. So with this in mind, he started at the University of Portsmouth back in Sept 2019, studying Business & Management.

"He settled into uni life pretty quickly! He joined sports clubs and played cricket for the University's 1st and 2nd teams. He even joined a dance group and grew an impressive moustache to raise money for Movember. Life for Ben was that of a normal uni student.

"However on Saturday 30th November Ben was suddenly struck down by meningococcal meningitis (MenB).

With time of the essence

"Following the quick thinking of one of his flat mates 999 was dialled. The ambulance crew that attended included first year student paramedic Adam who actually knew Ben socially, and had in fact been out with Ben a couple of days before. The ambulance crew noted that Ben was able to name those around him but could not tell the crew his own name. Given the concern Ben was blue lighted to QA hospital. On arrival in ED Ben was already semi-conscious and within 20 minutes of arrival in resus became deeply unconscious and went into respiratory arrest.

"Thanks to the quick thinking of now new ED Consultants Dr Benjamin Short and Anaesthetist/ICU Dr Matthew Taylor they realised that something neurological was going on and as Ben was deteriorating quickly they pumped hypertonic saline into him at speed. This was vital as Ben had already started to cone - this is where the brain starts pushing down into the spinal cord, the last stage before death. To make matters worse Ben had also aspirated his own vomit so his right lung was in a bad way!

In critical condition

Ben S's bacterial meningitis case study

"By the time we arrived at QA Ben was unconscious, incubated and on his way to ICU via CT scanner.

"Dr Matt Taylor (then an SPR) was absolutely brilliant at clearly explaining to us as a family what their findings were and what they were suspecting. He took on board knowledge within our family (I used to be a Sister in PICU) and also agreed to having our daughter who is an F3 on the phone so that she could ask questions. In addition he kindly agreed to speak to a friend of mine who is an intensivist at a London hospital.

"We were told Ben was the sickest patient in the hospital on 30th November 2019. There was also discussion about airlifting Ben to Southampton, however given he was so critically unwell it was felt this was too much of a risk. Instead the ICU department was in constant dialogue with Southampton’s Consultant Neuro-radiologists and Neurologists, between them agreeing the best course of action. A second MRI then revealed that as a result of the coning episode Ben had suffered bilateral strokes to the lower cerebellum. This was a major concern given that the lower cerebellum controls both breathing/bulbar function and motor movements.

Long road to recovery

Ben S's bacterial meningitis case study

"Ben’s road to recovery was made so much harder because of this. He’s had to relearn most things that we take for granted. He had two failed extubations and then needed a trache for 2½ weeks before being able to breathe by himself.

"Dr Peter McQuillan looked after Ben the most during his stay in ICU. Not only an outstanding medic his whole bedside manner was exemplary. He saw Ben through some of his darkest days and formed a close bond with him and Matt in particular. The things that made them stand out was the way that they communicated and took each teams’ viewpoint including family in decision making. Consultant Drs Nick Tarmy, James and Dave were equally outstanding in their delivery of care.

"The neurologist that looked after Ben was Dr Chris Halfpenny from Southampton. His open, honest pragmatic approach is something that Ben always appreciated. His thoroughness again outstanding. Once Ben moved to F1 Dr Halfpenny continued to visit Ben more for a social catch up than a formal consultation. Ben loved his visits and took great pride in showing him his latest achievements.

"All the nursing staff epitomised how nursing care should be delivered. Nothing was ever too much. Ben loved being looked after by all nurses but particularly Jason, Benjamin, Steff, Alex, Jack, George, Fodil, Francesco, Robert, Diego, Simone, Rani, Jean, Jo, Marguerite, Chloe and Arthur. These nurses in particular went the extra mile, not only was the care given exemplary but they went the extra mile to keep Ben fighting and motivated to try harder. Ben enjoyed their banter!

"Sadly Ben’s grandfather passed away whilst in hospital and on the day of the funeral the nursing staff made sure that Ben was kept busy so that he would not be upset. This meant so much to his family.

Incredible support from NHS staff

Ben S's bacterial meningitis case study

"Once Ben had his trache where feasible they always tried to get him outside as he loved fresh air. Getting off of the unit even for 30 mins was so special for him. The Sisters/charge nurses that had the most impact were Claire, Liz, Danya, Jenny and Jim. Each of these was very aware that Ben needed fresh sir and that family was important to Ben. They ensured where possible Ben was able to go out (this required 2 nurses or one nurse and a physio). At Christmas Jenny and Jim tried to make the day bearable by allowing Ben to have all his family around him eating lunch.

"Whilst in ICU Ben also received a tremendous amount of support from the physios. Suzie and her team - Debbie, Lee and Pippa - were just brilliant. As Ben began to move I brought stress balls in and we used to encourage him to throw the balls.

"Suzie was keen to motivate Ben and came up with novel ideas to encourage him to hit targets, we had sharps buckets as goals hanging from curtain rails. Lee borrowed the paediatric basketball stand and ball. Debbie and Lee worked hard on improving Ben’s chest and he gave them a hard time especially in the first two weeks. At every opportunity they encouraged and pushed him to be the best he could be. All this I’m sure is what contributed to the speed at which Ben would recover. Once Ben’s strokes were confirmed the ANT team came to see Ben. Following initial assessment they came to see Ben every day to try and get him moving and continued to see him until his transfer to F1.

Outstanding team effort

"This team are truly outstanding and extremely patient centred in all that they do. Again, nothing was ever too much trouble and they bent over backwards to help Ben. Flora, Michelle, Sam and Fungus are an asset to the Trust. When Ben wanted to gain some control over his care they came up with a whiteboard which had all his activities on it. Hence when anyone came to see him he could let them know what was happening. Providing patient catered care meant so much to Ben and his family Ben formed a close bond with Fungus in particular who would also continue to work with Ben when he was transferred to F1.

"Also whilst in ICU once Ben had a trache he was seen by SLT, Fiona Buck was truly exceptional. Ben was in a bad way when he first met her and given his age all he wanted to do was drink and eat. Ben did everything that Fiona asked of him and when goal setting became an important part of his recovery Fiona was happy to set goals - Ben wanted to eat a teaspoon of custard on Christmas Day, he got two! Fiona also kindly agreed to see Ben through to the end of his journey to normal diet which meant a lot to Ben.

"The therapists on F1 do an amazing job. Goal setting is so important and they epitomise how this should be done. Ben loved his sessions with all his therapists and these were definitely the highlight of each day whilst on F1. The physios Claire and Fungus pushed Ben hard and he needed this. Jess his OT made his day when she allowed him to cook a meal for himself! Rosie, although not his OT, was fantastic and Ben was so delighted, grateful that she offered him the chance to meet the PAT dogs. In his time at the hospital Ben met three, his favourite being Clara.

"A final highlight during Ben's stay was when a final year nurse Dana saw Ben's story on Twitter (we have a Just Giving page fundraising for QA) and asked if Ben would like to meet a warfare officer. Sister Liz kindly arranged this and Ben was so moved and touched by this gesture. Alex Harp is a charming young man and his offer to keep in touch with Ben made him feel so special. Throughout his stay in hospital Ben showed great courage and tenacity, he was determined to smash all his goals and took great pride in going so. All of this was achieved with the tremendous support he received from each person that looked after him.

"We are and will always be indebted to the QA for giving us our son back. Without the interventions of those who work in ED/ICU our son would not be here today. As his mother I was with Ben every day for 76 days and I can honestly say that I was deeply moved by the care that received and as a family we are ever grateful. Ben was in ICU for just under 6 weeks and then a further 6 weeks on F1. In total he was in hospital for 2½ months, originally this was set at 6 months.

"Ben was discharged home on 13th February and since then he’s gone from strength to strength. He has made a full recovery with no deficits. He’s even gone back to work at his holiday job at McDonalds. All being well he will resume university in September."