Amy and her mum Rachel share their story.
The accident happened during a PE lesson at school. Amy and her classmates were taking part in basketball practice and several balls were in play. A child aimed for the basket and missed, the ball bounced off the backboard and struck Amy on the back of the head.
Rachel tells us: “After a short while she felt ‘funny’ and as though she had pins and needles in her head. When I collected her from school that day she seemed a little off balance, so I took her to A&E. We were told she had sustained a concussion but that they didn’t feel it was serious.
“We were told to get in touch if she developed further symptoms, but no one gave us a care plan or emphasised that a minor concussion can have lasting and serious effects. We left hospital with me feeling she was fine. I wish they had warned me that post-concussion existed and that rest following concussion, mental as well as physical, was important.”
The following morning, Amy returned to school but after an hour she became unwell and was sent home. Back at home she was violently sick, so her mum Rachel made an emergency appointment at their GP surgery. The doctor reassessed her and sent her home suggesting a few days rest.
Getting the right support
Over the next few weeks, Amy returned to A&E on the advice of the 111 service three times as she was in so much pain. Each time she and her mum were sent home and told it would be better very soon.
Rachel shares: “Generally, at this stage I felt like an overanxious mother and we both felt dismissed. Fortunately, Amy’s science teacher asked to talk to me at school as he was so worried about her because she was struggling with fatigue, brain fog and concentration. He had spotted something was definitely wrong.
“He advised me to return her to the GP and not take no for an answer! I did so and we were referred to a consultant paediatrician. She was excellent and supportive, and Amy very quickly received a brain scan. There was ‘an incidental finding of a pineal cyst’ but basically the scan was clean. The diagnosis then became post-concussion syndrome.”
Amy and her mum Rachel were advised to see an osteopath privately in case whiplash was a factor. At the follow-up appointment they were given the details of The Children’s Trust and advised to self-refer.
Specialist support
Amy and Rachel began seeing Lois, Community Rehab Coordinator at The Children’s Trust, and Florence, Community Rehabilitation AHP (Allied Health Professional) Nurse through an online platform.
During those sessions, the Virtual ABI Team gave them information that they could share with Amy’s school so that they could put in place the support that she needed, such as adjustments to her timetable. The team also went through what aspects of life Amy was struggling with and gave her coping strategies, including planning, pacing and prioritising activities to manage fatigue.
Amy says: “In my first two sessions we outlined my goal as being ‘to help reduce the impact of fatigue and to increase participation in school’. In order to break this down, we thought of ten little steps to build up to achieving these goals.
“For my guitar goal, the first one was ‘attending one 30-minute guitar lesson once a week, currently unable to play in free time’ which I was currently doing. Two weeks after my sessions, I managed to play guitar for 10-20 minutes in my free time without my headache getting significantly worse. I achieved this through planning, pacing and prioritising.
“Through the fatigue methods I was taught, I managed to increase my guitar lesson in school to one-hour a week and playing for 10 minutes in my free time, without my headache getting significantly worse. I even continued with this during my GCSE exams through effectively managing my fatigue.”
“I would never have managed any of these things without the techniques I learnt from Florence and Lois.” Amy
Ongoing support
Amy tell us: “Since my regular sessions ended, The Children’s Trust have made it clear that my mum and I can get in touch with them whenever we need up until I am 18, so despite not having any more regular sessions, I know support is there if I need it.”
Rachel adds: “We are hugely grateful for all the support we have received from The Children’s Trust. As a parent I found it so supportive to have someone to turn to, to ask questions and someone who took Amy’s situation seriously and offered constructive help.
“It was particularly important for me to feel supported when dealing with school and getting adjustments made which enabled her to cope with sitting GCSEs as well as she did. I think we both probably felt empowered by the support and validated and listened to as well.”
“I honestly can’t imagine how we would have managed this last year without their help” Rachel
The Children’s Trust’s Virtual ABI Team provide a free, goal-directed digital rehabilitation support service for children, young people and families living with acquired brain injury across the UK. Find out more: thechildrenstrust.org.uk/our-services/community-support
