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Hospice is a lifeline for family of young adult using service

Lee Clark, aged 22 from Hebburn, began using our Children’s Service aged 10 in 2004, just a year after the service opened. Lee has used service for 12 years, which is more than any other child. His mum, Donna, explains why coming for short breaks at the Hospice is so important to them, she said:

“My son, Lee, comes for short breaks at St Oswald’s for 5 nights a month. For us, the Hospice is a lifeline and keeps our head above water.

“Lee has a condition called Adrenoleukodystrophy, which affects the nerve cells that allow him to think and to control his muscles. This means he needs round the clock support. I am his main carer so when he is at St Oswald’s I get a break.

“We first came to visit in 2004 when the service was still very new. At the time, Lee was using a service in Hartlepool, so the thought of coming somewhere that was on our doorstep was really exciting. On visiting St Oswald’s we got a really good feel about it; we were impressed by the facilities and the fact that the service is led by nurses.

“Lee gets a lot out of coming to the Hospice – he gets all his therapies, including physiotherapy, and he loves the Jacuzzi baths! He just loves being around people, and coming to the Hospice means he is around his peers. He can’t take part in activities but he still gets enjoyment from interacting. When we are coming to St Oswald’s, he now understands where we are going and has a big smile on his face.

“And for me, when Lee comes to the Hospice, I get a chance to recharge my batteries and can relax knowing he’s comfortable and in good hands.”

We extended our service to care for young adults aged 18-25 years old in 2012, just as Lee was approaching his 18th birthday. Prior to this, we could only care for children up to the age of 18. Donna explains how important it was that we extended our service:

“It was a huge relief when we found out that St Oswald’s were beginning to care for young adults. Now we have experienced the expert care at the Hospice, we felt that there wasn’t going to be any other services that could match their standard of care. We began to look at other places but I panicked.

“I can’t express the happiness I felt when I found out that Lee could continue to be cared for until his 25th birthday, I don’t know what I do without the Hospice’s support.”