Anna shares her story.
“Harry was diagnosed with a brain tumour when he was nine months old. He had his first brain surgery at ten months old and has since undergone further surgeries and four different chemotherapy protocols over the last few years.
Harry was very young when he first started treatment, so we're still learning what some of the long-term impacts of his brain injury will be.
One of the challenges we have faced, is that following Harry’s medical treatment, we have tended to see specialists in isolation which means you don’t get such an holistic overview. All these professionals that we see, they’re all brilliant, they’re all experts in what they do, but particularly in the community, many haven’t come across a child like Harry before. They haven't got so much experience of the longer-term impact of brain tumours or acquired brain injuries.
The benefit of talking to Flo, Community Rehabilitation AHP Nurse at The Children’s Trust, was talking to someone who had so much experience of working with families like ours. It was so validating, and having access to that experience and wealth of knowledge, being able to talk things through with her, I can’t emphasise how useful that has been.
Specialist support
Harry's balance and co-ordination have been significantly affected, as well as his hearing. Now that Harry has started school, we're finding that managing fatigue is much more of a challenge. When we came to the team at The Children’s Trust, we were looking for practical tools that could help Harry articulate when he was feeling tired, both at home and school.
We were also looking for advice on how to better manage his time outside the structure of school. School have always been good at building in rest breaks during his school day, but we realised we weren't really thinking about this at home or on weekends and school holidays.
We also wanted some support around how best to communicate with people around us the impact that fatigue, and more broadly acquired brain injury, has on Harry.
Practical tools
The support from the Community Rehabilitation Service’s Virtual ABI Team has been brilliant. The team really took the time to get to know Harry and our family, to understand what has happened over the last few years, and what our current needs are. Flo gave us the time and space so we could really focus on Harry's day and week and look at activities and timings to understand where the challenges were.
The use of visual tools have had the most impact for us; both for us to keep notes of when Harry seemed most tired and what might have contributed to it, and a tool for him to be able to show us when we was feeling low or high energy so we knew to plan things accordingly.
Harry has a picture of a battery charger in his bedroom and downstairs at home, so that he can say where he is on a scale is throughout the day. He can tell us if he’s feeling more tired so we can think about what activities we know might give him more energy (sometimes having something to eat or some down time) so that’s been really helpful.
Since the support from the Community Rehabilitation Service, Harry has more awareness of his own energy levels and increased confidence to say when he needs to switch things up if he's feeling tired. We plan our time differently now as a result.
Daily family life
Conversations with Flo helped us take a step back and think about how we structure our day so that we can manage Harry’s fatigue and help him with his emotional regulation.
Half term was a brilliant example; previously we would have different plans for what we would have done during the week, we might have gone to see family and had trips out, but we decided to slow things down and it was just really nice. Instead, we did one activity that he really wanted to do, an early birthday treat, and then we picked a day where we thought about what he had done the days before and after, and it worked really well. Having that knowledge has just really, really helped.
We do try and be led by him as much as possible, but we also now know when to push him a little bit as well. Sometimes, being a typical six-year-old, he does want to just stay at home and play with his toys, but there are times that we need to keep up that encouragement so he can work on his walking and independent skills. The support from Flo has helped us to unpick when he actually is really tired, and when he does just not want to do something.
Wider support
Some of Harry’s disabilities are more obvious, for example his hearing loss or his mobility, but some others are a bit more hidden, like the impact of fatigue. This is quite challenging for Harry and harder for us to articulate to other people. Speaking with the team has given us the language so we can share the hidden effects his brain injury with other people in a way that they can understand. We feel better equipped to explain it so that’s been really useful.
Moving forward with confidence
Having the space to talk about quality of life with a team that are very experienced and can signpost and give us access to information came just at the right time for us, and that’s what was brilliant.
I really felt heard and it was great to work with a team so knowledgeable about brain injury and who had so much experience of working with children and families like ours.
The information on the Brain Injury Hub has also been a really useful resource and has given us a lot more understanding about the impact of acquired brain injury.
We are very grateful for the support the team gave us. It really came at the right time for us as a family.”
