Aidan’s Story: “Hospice care was a game changer for our family”
Aidan is eight years old and lives with cerebral palsy, epilepsy and severe gut dysmotility. Born prematurely, the full extent of his condition wasn’t recognised until he started experiencing absence seizures at two and a half years old. An MRI confirmed cerebral palsy and brain damage, and from that point his needs quickly became more complex. This is Aidan’s story told by his mum, Zoe:
Aidan was born prematurely at 35 weeks. But by the time they had the diagnosis, Zoe was already pregnant with Kylan. Genetic testing later confirmed that both boys carry the same chromosomal abnormality, although Kylan’s needs are not as complex as Aidan’s, she explains:
“At two and a half, Aidan’s epilepsy just absolutely took over. And then he lost his ability to eat, his swallow. He ended up in hospital every month for chest infections and most recently with a twisted bowel. That almost killed him and took six-hours of emergency surgery to put him right, although he now needs to be fed intravenously and we’ve had complications with his digestive system ever since.”
Being referred to Helen & Douglas House was a game changer for our family, a massive game changer. The hospice introduced us to other families like ours and we started going to the parties. For the first time, Aidan was doing the normal things 8-year-olds do.
Zoe, Aidan's mum
Finding the support they desperately needed
As Aidan’s needs grew more complex, the family were referred to their local children’s hospice for more specialist palliative care. Zoe describes the profound impact of being introduced to other families and professionals who saw Aidan “beyond his medical complexities”:
“Being referred to Helen & Douglas House was a game changer for our family, a massive game changer. The hospice introduced us to other families like ours and we started going to the parties. For the first time, Aidan was doing the normal things 8-year-olds do.
“The nurses there are amazing too. They see Aidan as a person, not just for his medical needs and are brilliant at knowing the ins and outs of the various systems we’re currently navigating. They also provide around nine respite nights each year. Aidan’s needs are specialist meaning we prefer to stay overnight with him, but this respite gives us some time to relax and be a family, not just his carers.”
NHS care is overstretched
Aidan also has access to an NHS community nursing team and paediatrician, but their input is “limited” when it comes to any emotional or day-to-day support.
“The NHS community nurse teams are great at helping with some of the medical procedures I manage. But they’re way overstretched and just aren’t readily available for all the nitpicks you get caring for a complex child, or to support with some of the more traumatic experiences we go through as a family.
“For example, when Aidan ended up in PICU for his twisted bowel, we realised that unless you can access a hospice that truly understands what it means to care for a medically complex child, the emotional support on offer can be very limited.
“Kylan too has witnessed frightening moments, and he does have access to sibling support from the hospice, but he can struggle with it because he’s neurodivergent. But at least we have the other parents at the hospice to help with processing those things.”
Services aren’t planned around the whole family
Aidan requires deep suctioning, emergency seizure medication, oxygen overnight, chest physio, and constant monitoring. So the family feel very fortunate to have been granted an NHS continuing care plan that provides funding for his carers five days a week. But that still leaves gaps in provision when the family has to cope alone.
“It doesn’t factor in that I also have a severely autistic child that likes to escape and run wild. So when my sole care is needed to help Aidan’s carer, or my carer goes on holiday and their dad is at work, there’s no cover and Kylan is just left to fend for himself.”
Seeing the whole picture
It’s made the world of difference, says Zoe, but the family have had to fight tooth and nail for it, resulting in Aidan having to spend long periods out of school until his needs could be met:
“My carers now know Aidan like the back of their hand. They’re like a second mum to him. But while the ICB have been fantastic at providing care on an individual level, it really shouldn’t be a battle like it has been.
“The thing is, you’re constantly dealing with people who aren’t experienced in medically complex children or don’t fully understand the medical side of things. As a result, parents like us are often left in a position where, unless you know exactly what to ask for, you simply don’t get it.
“There is an urgent need for someone to help join everything up and take on a coordinating role, someone who can see the bigger picture of what’s going on for my family and help ensure children like Aidan get the support they deserve.”
