What advances have been made in children’s hospice care in the past 21 years?

I’ve been a paediatric nurse for 25 years, working in palliative care for 13 years. Of course, the sector has changed in many ways during my career but the most significant change I’ve seen has been in the complexity of children’s conditions.

Advances in medicine and technology mean that children live a lot longer. Where previously many of those with life-limiting conditions would have died in their primary or early secondary school years, they are now outliving our service and transitioning into adult care.

Whilst these medical advances could be seen as a great victory for science, the impact that complex and invasive care has on a child’s general wellbeing can be very great. When I started working in children’s palliative care, the aim was always to support and enhance life. There has been a change in focus recently to sustaining life. These interventions can be quite relentless for the child or young person, but the burden of care also falls to family and carers who must manage complex care 24/7.

Image above: (left) the House being built in 2002/3, (right) how the House looks now in glorious Spring 

Breathing space

The most transformative change in children’s hospice care is the increase in children receiving ventilation.

We now have 55 ventilated children at Chestnut Tree House. Some of them require ventilation while they sleep to give them more energy and help them enjoy and manage life while they’re awake. We have, however, seen a huge increase in invasive ventilation, where the child or young person is completely dependent on the ventilator to sustain life.

Those children are ventilated through a tracheostomy, and they need significant support and 24/7 care. Often, they have a nurse with them at all times. When I joined Chestnut Tree House five years ago, we couldn’t bring those young people onto our caseload.

We are delighted to be able to do so now, but being able to meet the needs of those children has meant a huge change in service delivery. We brought in a ventilation specialist, Hannah Lines, who was awarded Nurse of the Year at the WellChild Awards in 2023. She works with young people and their parents out in the community and in the hospice, while also training other staff in the care of ventilated children.

But the way we deliver care at Chestnut Tree House is very different to looking after a ventilated patient in hospital. It’s one thing training on a simulation model and learning about how the ventilator interacts with the respiratory system. It’s quite another thing caring for a child who might be running around the gardens, swimming or playing on a swing.

Part of our job is managing that risk, making sure that children stay safe while having fun and having opportunities to be included in activities and use our accessible facilities. When these children are in hospital, they are in a high care setting, so our care team needs to develop many of the same skill sets as nurses in intensive care and high-dependency units.

A high number of children here are tube-fed, but we are now seeing more and more young people receiving parenteral nutrition, which is where they’re being fed into a central line directly into their bloodstream. That has major implications for infection control and patient safety, so there are more clinical skills for care staff to consider. Again, we have upskilled our workforce so they are proficient in this area.

Above: Hannah collecting her WellChild Award

Asking the right questions

Where clinical interventions are increasing and sustaining life, there needs to be parallel planning whereby support and interventions are provided whilst identifying ceilings of treatment and planning for a good death. These conversations are challenging for everyone, but they are absolutely necessary – palliative care is about helping children to live and die well.

Children’s palliative care is still in its infancy – Chestnut Tree House is 21 years old, and there aren’t many children’s hospices that are older than 30 – and those of us who work in this vital field see it as our duty to bang the drum and advocate for the palliative care needs of children and young people. Equity of care, or the lack of it, is a national problem and Sussex is one of the loopholes because we have no specialist paediatric palliative care consultants.

That means some children are falling through the gaps. While children with cancer have provision from specialist regional centres, they make up a minority of our caseload. Many children with non-oncology conditions don’t get specialist support throughout their condition. A young person living with Duchenne muscular dystrophy may be living with pain and respiratory discomfort, while still being managed by general paediatricians who haven’t had special training in the condition.

• Read Andre’s story to find out more about living day-to-day with Duchenne muscular dystrophy.

We need to ensure that children and young people are receiving the right care, at the right time. Advanced care plans are a vital part of that care, and it takes a very skilled and confident professional to open these conversations with families and young people who might be caught on a hamster wheel of constantly ramping up care.

Moving on

When Chestnut Tree House opened, very few children transitioned to adult services. Now, it is increasingly common to see young people living into adulthood and moving on to adult services. We now have 80 young people over 14 who we’re talking to about transition. The care offer and pathways are different in adult hospices but we are trying to be innovative and talk to the adult hospices about ways they can support these young people.

Recently, we identified a need to strengthen our provision in child and family support. We now have a paediatric chaplain here almost full-time as well as a very strong team of social workers and therapists. Together, they can provide pastoral, spiritual and emotional support to young people from the moment they are referred to us.

Children with a life-limiting condition and their families can become very isolated and that’s been even more noticeable since the start of the pandemic. We have worked hard to improve the accessibility and inclusivity of our groups and events, so Chestnut parents and carers and other family members can build a supportive network. If you’re a bereaved mum having a bad day, sometimes only another bereaved mum can understand what you’re going through. Just being able to reach out on a WhatsApp group can make a world of difference.

There are many other exciting developments at Chestnut in this, our 21st birthday year. I’m very proud of the progress that’s been made here, and in the wider sector. But there is still much more to be done. And in my next blog, I’d like to tell you a bit about how you can have a say in how we steer children’s hospice care into the future.