Emergency call outs on Christmas, trudging medical equipment through the wind and rain and traveling great distances, CHAS at Home nurse Sue Stanworth does everything in her power to help families across Scotland who need her.
Sue and her team care for children and young people in their own homes when they are in between hospice visits or are too ill to travel. For families who live in isolated areas in particular, this service can be a lifeline.
"The CHAS at Home service is really important to a lot of families," says Sue. "It gives the parents some much-needed respite. Sometimes we're just at home with the children, playing or doing an activity so that mum and dad can either go out together or maybe focus on one of the other siblings. Parents with an ill child can miss time with each other. Things like catching up on housework or going to the dentist can be extremely difficult with an ill child but the CHAS at Home service allows the mums and dads to do those things. We cover a big area so some days we do little visits in Inverness, say, and other days we might be travelling to Fort William or Orkney. Unfortunately, not all of our children live on main roads so we have been seen to carry equipment down farm tracks with snow up to our knees!"
One person who has found the CHAS at home service offered by CHAS invaluable is Natasha Wilson. Her six-year-old boy Sonny has a rare and complex congenital heart and lung disease. "We'd be lost without Sue and the team at CHAS," says Natasha. "And Sonny would really miss them."
Sonny lives with Natasha and dad Stewart in Elgin although Natasha is often left alone with Sonny due to her partner working off shore. "Sonny has a complex illness and some people don't realise just how ill he is because he doesn't look unwell," she says. "He's on so much medication that I could never ask family members to look after him. He needs medication up to midnight every night and then again at 6am, it would just be too much to ask. Using the CHAS at Home service means that I can get things done and I know that Sonny is being well looked after. Sue has been in his life for around two years now and he really looks forward to her visits, although sometimes they fall out with each other! Sue and the team understand his cheeky personality."
"Using the CHAS at Home service means that I can get things done and I know that Sonny is being well looked after. Sue has been in his life for around two years now and he really looks forward to her visits, although sometimes they fall out with each other! Sue and the team understand his cheeky personality."
Although most of Sue's call-outs are from families she knows and has worked with before, emergency calls happen too, at any time day or night. Sue's dedication to her job wouldn't keep her from a call-out even on Christmas Day.
"Most of the visits we do are pre-planned but we do have the capacity to react to urgent calls as well," she says. "On Christmas Day we received a call from a family whose child had unfortunately died and we were asked to go and provide something called a cooling blanket which allows the child to stay at home for a week before the funeral. We hadn't met the family before but we went there on Christmas Day to make sure they had what they needed. We also did some daily care over the week to make sure the blanket was working and that the family was okay. It made a huge difference to them and for their grieving process."
Sue is one of the many CHAS at Home nurses supported by CHAS who are invaluable to families across Scotland. Few people realise that, as a hospice charity, CHAS would offer such a service but it is something that's relied on by many. For Sue, as well as helping them cope, it's all about bringing fun into the lives of children and families. "I think the word hospice is difficult because when people think of hospices they think of an adult hospice which are often for people who are acutely unwell or at the end of their life," says Sue. "But our hospices and services are a lot more than that. It's for fun, it's for a break and it's quite difficult to get the opportunity to explain that to people because they hear the word hospice and don't want to engage. I would love to explain to everyone what we're really about and how important CHAS is to countless families."
For Sue and the team at CHAS, one of the biggest challenges is informing the public about the services on offer and ensuring they are able to reach every family that needs them. "All families are assessed the same way and anyone can refer a family," she explains. "CHAS then seek information about the child's diagnosis and condition and go about the process of contacting the family and having discussions about how we can help. We can dip in and out of their lives as much or as little as they would like us." Ultimately, we aim to expand the CHAS at Home service to enable us to reach more families across Scotland and Sue is urging the people of Scotland to donate to this much-needed service.
"CHAS is keeping the joy alive, right across the whole of Scotland. I have colleagues all over Scotland, determined to help families in any way they can, no matter where those families live, the time of day or the weather. We just wish there were more of us, so we could be there for every family in the country."
For over 25 years, CHAS has been offering a full family support service for babies, children and young people with life-shortening conditions.
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