Charlie’s Story

We know the words children’s hospice are frightening when you have a life-limited child, especially when you’ve never stepped foot inside one. That’s why we always open our doors to any parent who needs our support before they even start the referral process. There are lots of misconceptions around children’s hospice care, and often it’s only by coming in to Brian House that our parents can truly get a feel for who we are and how we can help.

But throw Covid-19 into the mix, and a referral into our care is all the more daunting.

But for Laura, our work with her family made her son Charlie’s first stay with us much easier for the whole family.

Our nurses spent time with Charlie at home, getting to know him and his routines. And because we worked hard building a relationship with him, and his twin sister Daisy, Charlie was really excited for his first stay with us in January.

His night away from home gave Laura the chance to spend some quality time with Daisy, who quickly learned her brother’s Short Bowel Syndrome meant he needed more time and attention 24 hours a day. It also gave Laura some much-needed rest.

She said: “Charlie is well known at the assessment unit at Blackpool Victoria Hospital, and the nurses had mentioned a referral to Brian House a few times, but I resisted. I just thought Charlie is my child; I am his parent. It’s my job to look after him. But the nurses saw the strain on my face and mentioned that Brian House could be there for Daisy through sibling support as much as they could be there for Charlie.

“So in August, we went to have a look around. I just kept looking at Charlie, and thought as long as he was happy, it was something we could start doing. Well, he absolutely loved it. So we put in our application and the staff at Brian House started coming to our house for support visits.

“Charlie just fell in love with them and he was so excited to start going to Brian House.”

Laura said it wasn’t until Charlie wasn’t there that she realised just how much care he required.

“After Daisy went to bed that night, I just sat there. I didn’t realise how much I do for him at night, and then I had nothing to do,” she said.

“I was anxious about leaving him there, but the staff had done so much with him to get him used to them that Charlie wasn’t worried or upset at all. He was so happy to go in, and that put me at ease.

“The staff at Brian House were amazing. I knew he would be fine, but they said I could call as many times as I needed to. I did well, I only rang once. When I went to pick him up the next day, he had the biggest smile on his face, and he told me everything they’d done with him.

“He’s already asking me when he can go back.”

 

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