What it’s like being a social worker in a children’s hospice

I joined Chestnut Tree House in the summer of 2024. I’ve worked with children throughout my career but years ago, before I qualified as a social worker, I worked in the play team at a children’s hospice. That was my introduction to children’s palliative care, and it made a big impression on me.  

Supporting the brothers and sisters of children with a life-shortening illness is an important part of what we do here. We host many events for families throughout the year, and they’re a good way for these siblings to meet other children or young people who understand what they’re going through.  

Often, parents worry about the emotional impact on their other children – that they might feel isolated, neglected or forgotten. We can help siblings find greater independence and provide a space for their voice to be heard. We always encourage them to join Young Carers’ groups because hearing about others’ experiences – and having the support of their peers – is invaluable.  

When a child needs a high level of care, the parents do have to prioritise attention for that child at times – they just don’t have a choice. Parents can feel guilty and frustrated, despite going above and beyond for their family.  

Sometimes it can be helpful for us to work directly with the child, using social work tools and approaches, to help them understand their sibling’s condition and the impact on them.  

We also work with schools to support children with complex needs and their siblings. For example, a child might come into school tired and find it difficult to concentrate. They might be displaying certain behaviours or struggling to complete homework. 

We can provide parents and schools with information and advice about how best to support the child. This can include resources on how to speak with a child when they ask questions about their sibling’s health condition. Often the social work team supports in providing resources to help adults speak to children about death and dying in an age-appropriate way. 
 

Our unique social work role is to offer therapeutic collaborative support – working with and alongside our Chestnut  families while promoting the safety and wellbeing of all family members. 

We can advocate on their behalf in areas such as Education, Housing, Benefits and employment. For a lot of families, finding the right education provision for their child can be stressful and daunting. We can attend SEND (Special Educational Needs and Disability) meetings and support them, while our key workers can give clear details about how their health might affect their education.  

Life is complicated. Having a child with a life-limiting condition makes it more complicated still. Simply juggling their care needs and the many different agencies involved in that child’s life is a full-time job, but then a parent might be having issues with housing, or perhaps they’ve just had a baby, and they don’t know how the benefit system works.  

We can arrange to visit them at home or chat over the phone and provide them with the information they need. We can help point them in the right direction to get additional support.  
 

As a team, we focus on the lived experience of the child – their own knowledge of their condition and situation – and focus on what we can do to address any difficulties they’re having. Benefits and finances, for example, are so important, because they affect the whole family – but they take time and energy to sort out, and they are in short supply when you have a child with additional needs.   

For example, we might have cared for a baby who sadly died, leaving behind a bereaved parent who is also a vulnerable adult. In that kind of situation, we’d be setting up a package around them to keep them safe and protected. 

We’d recommend therapy with one of our counsellors and if we had concerns about their mental health, we’d refer them to a psychiatrist and their GP too. They might be worried about paying their bills next month because they’re off sick, telling family what happened or supporting their other children. 
 

When families are referred to us, they are often reeling from a shock diagnosis. They’re stepping into a new world; one they know nothing about. 

We know that the cost of raising a child with a disability can be three times higher than families with a non-disabled child. Coupled with the cost of living, this can create significant barriers for families. Helping families understand what benefits and grants they are entitled to can make things just a little bit easier.  

We work closely with both families and our Local Authority partners to advocate for children, young people and families and help them to navigate the complex systems of health and social care.  

For all children’s hospices, one of the most significant changes of the past decade relates to the fact that children are outgrowing our service. Medical advances mean that children are living far longer, and with more complex conditions, than ever before. It can be very scary for them to be faced with the transition away from children’s hospice services and preparing them for that is a significant part of our work. 

It can be a time of anxiety about what the future holds, but it is also a time to celebrate improvement in health and quality of life. 
 

We will shortly be providing workshops to aid with what we call ‘transition’, providing young people with information around managing their own finances and health, where possible, so they can have more independence when they reach adulthood. 

It’s about enabling them to embrace that autonomy and control of their lives. We work with young people through our transition offer ‘It’s all about you’, to enable them to feel reassured and confident in their transition to adulthood.  
 

Of course, this job comes with difficult days. Children’s hospices are wonderful places, full of love and joy, but there are also moments of great sadness. I deal with that by remembering that feeling sad is part of being human. 

We all bring our own personal experiences with death to this job as well, so there might be some things that trigger us, and I think Chestnut Tree House is very good at providing us with support.  

I feel so privileged to be a part of Chestnut Tree House and stand beside our families.  

Working with Chestnut families – whether that’s with the children, their parents or their siblings – you have the opportunity to make someone’s life a little bit easier. We can also help them get as much as they can out of life, and that’s a wonderful thing.