“At the end of the day I am so happy to have had the support to complete an Advance Care Plan for Kacper.  It gave us Time, Space and Peace.”

This is Kacper’s story, told by his mum Anna…

Kacper was referred by his community paediatrician to the Lancashire and South Cumbria Kentown Support programme in 2023.  His mum, Anna, met with Victoria, one of the Kentown’s Children’s Palliative Care Community Nurse Specialists.  Kacper had a life-limiting condition and attended a special school where his mum Anna also worked.

The role of an Advance Care Plan (ACP) was discussed but at that point in time, Anna did not feel ready to take the conversation further.  She had been used to Kacper going in and out of hospital and felt able to manage the situation as she always had.

“Things changed in 2024”, said Anna “when Kacper was admitted to The Royal Preston hospital and was subsequently rushed to Alder Hey.  I was told to say my final goodbye to Kacper because his condition had worsened, but, by some miracle, he improved and made it home. 

What a fighter!”

It was at that point that Anna revisited the Advance Care Plan which she worked on with Kacper’s disability nursing team.  “Once the ACP was completed and in place I wanted to forget about it” said Anna, “and hoped it wouldn’t be needed any time soon although I was aware when creating Kacper’s ACP that the inevitable may happen. It was just very hard to think about.  It’s not in the right order of things if a child dies before the parent.”

Anna remembers having a conversation with Victoria about whether there were any wishes she may like the Kentown Support team to expedite.  She thought long and hard and it was only when she was listening to some classical musicians playing in the town before Christmas in 2024 that the idea came to her.  Kacper loved classical music so Anna contacted the Preston Philharmonic orchestra with her idea – for a musician to play for Kacper at home.  In March 2025 a cellist played for Kacper.  “He absolutely loved it,” said Anna.  “I made it happen for him.”

Things changed when, in January 2026, Kacper was rushed to hospital as an emergency and was diagnosed with pneumonia and sepsis.  Anna was able to tell the health professionals in the A&E department about Kacper’s ACP which, she said, made things much easier for her and the staff at the Royal Preston. Anna remembers the respect shown to her by the staff and how they did their best to make things as easy as possible for her and Kacper at the end.

“Completing the ACP really opened my mind to things I hadn’t thought about before.  There are so many important things to think about, so many things to plan.  Through the whole ACP process I had time to think.  I had time to learn how to think about things that needed to be in the ACP without feeling guilty that I was wishing Kacper’s life away.  The whole process gave me clarity.  I wish I had done it earlier.”

Anna believes that if Kacper had been referred to the Kentown Children’s Community Palliative Care programme earlier, she would have benefited from wider support especially with regards to the ACP.  “I would love to have prepared myself and my family earlier. It would also have meant that I didn’t need to keep repeating Kacper’s story to every professional because I would have had a coordinated Kentown team around me all sharing the information around Kacper.”

Sadly, Kacper died a few days later with his family at his side. “We were given Time. We were given Space and we were given Peace.

But the support did not end there. The Kentown Support team organised for a grocery delivery to be sent to Anna.  “I couldn’t believe my eyes when the delivery arrived.  It was just what I needed at a time when I did not want to go out and face the world. Thank you.”

Anna wanted to share her story with other families of seriously ill children who may, like her, not want to explore the idea of an ACP and hopes that her story has helped to highlight how the journey of putting an ACP together, can really help in the most difficult of times.