Monica Philpot, a Roald Dahl Acquired Brain Injury Nurse Specialist who works at The Children's Trust, explains what life can be like after a brain injury and what can be done to help
When a child has a brain injury, each family has a major shock in their lives. It can't be undone so professionals including nurses need to acknowledge that families will go through sadness, grief, anger.
Families affected need the acknowledgement that it's okay to be sad - yes they are grateful that their child made it, but life may not be the same again.
Children will face different challenges, and professionals and parents can watch this and do their best to make sure the children are okay. Changes can manifest themselves in many different ways - perhaps behaviourally or cognitive problems.
Some things will work better for some children than others. Cognitive work includes 'scaffolding', where a child or young person may have cue cards. This is just a simple reminder of what they need to do, such as turn up to meet someone. With mobile phones this is easier now - many people set reminders on their phone and that's a usual thing to do. Some children are anxious or suffer from fatigue. Some find it hard to remember things.
I know a girl who had a brain injury who went on to have a baby several years after. She couldn't quite remember what milestones her baby had reached so she took photos of her baby every day to remind herself of what stage he was at. While many parents take frequent photos, there was a practical purpose to this young lady's photos - and it helped her.
Whether a child or young person is age three or age 16 when they have a brain injury, some friends may fall away. A level of patience is needed from friends or family that wasn't needed before, and the child or young person will be different to how they were. One young person fell away from her friends as she would forget to turn up to meet them - we need to think about where support, however small it feels, can make a difference.
As a nurse, my job is to look after the child and the family. Parents hope that we mend children and get them as near to where they were before. Parents know what they want and they want to know how to get there. But challenges lie ahead and there is no quick fix.
Professionals and friends need to try to be supportive. This is one reason why I became a Roald Dahl Nurse. In addition to my clinical role, I will float about calmly and oversee practicalities when loving from hospital to rehab, for example, and I'll also be an emotional support.
I have been a Roald Dahl Nurse for eight years and I am passionate about what this really means. But there are lessons that any professional, friend or family can learn. Roald Dahl was quite a sick man, but he felt that the nurses he saw for his illnesses were not personal, dashing in and out of his home for his checks.
For this reason, when Roald Dahl died, his wife set up a group of nurses that would be funded by Roald Dahl's Marvellous Children's Charity. As well as covering the clinical side, these nurses are given the time to stay with the patient once this work is done, chatting about the condition and how the child is at school, for example.
I am proud to be a Roald Dahl Nurse and being supportive is something we can try to do more of. Whether we are a professional, family or friend, we can look at the gaps we might be able to fill; we can read more information to increase our understanding; and we can hopefully make that difference.