As part of our Children’s Hospice Week celebrations, we caught up with our longest serving team member, Jen Plews about her role as Health Care Assistant, how we’ve evolved over the last 26 years, and what we can do for families who need our services… 

Tell Us About Your Role? 

Ah well, my role is vast. I’m here to take care of the children, but that covers everything from the care side, to the play side, to the well-being side. Just being here for them through the days and nights that they stay with us. Every day is different, even if you’re looking after the same children that you’ve looked after many times before, every day will be different, so we just go with the flow with our children to ensure that we meet their needs.  

A kind of typical day would be you come in, we have a hand over, we find out what’s gone on through the night, whether the children have slept well, tolerated their medication and feeds well and basically find out everything that’s happened so we can plan for the day ahead. Some children may have been supported with feeding already and some may be ready to be supported with feeding. Once that’s completed, we then support the children with either a shower or a bath, dependant on their needs, abilities and preferences. Although bathing can be tiring for some of our children, it’s also really therapeutic – it’s a chance to get out of their wheelchair, feel the warmth of the water, and we can give them a nice head massage and just a bit of pampering. Then after lunch, we will do something fun, either a craft session, or play session. If the weathers nice we’ll go in the garden or on a nature walk around the local area.  

It’s just such a privilege to work with our children and their families. 

Who Uses Our Services? 

The children who use our Hospice usually have the most complex conditions, which are often life-limiting. Currently, apart from one child, they are all wheelchair users and all require specialist equipment for bathing, eating, and sleeping. All the children and young people require the administration of medications and have other personal care needs that we take care of, or support them with. The care plan for each child is hugely important as it outlines their exact needs and guides us in the care we deliver, and importantly as well as their clinical care needs, it also tells us more about the child, what they like, don’t like, activity preferences and just about them as a person, which is so important when a child is visiting us for the first time. We want it to be like a home away from home.  

How Do People Access Our Services? 

A child is usually referred by someone from their professional clinical or social care team, that could be their GP, Consultant, Community Nurse, or Social Worker etc. We then set up the initial visit, where we meet the child and their family. During this visit we can assess the child’s needs to ensure that we are the right placement for them, and it gives the family the chance to see what we can offer them and their child. We can also assess how many sessions and overnight visits the child can access dependant on their local authority commissioning. Once that’s all sorted, we put their care plan together, this can take quite a while so we will do a fun activity with the child while their parent/carer is working with us in putting their plan together. We will have all of their clinical information from their clinical team, so will know at this point what the child needs, things like what kind of equipment is required for support with feeding, sleeping, mobility, as well as their medication routine – everything goes into their care plan. As well as the clinical side of things, it gives us an opportunity to get to know more about the child, what they like, what they don’t like, if they have any aversions to certain sounds or activities, and what they enjoy doing, this is so important because most of the children we care for are non-verbal, so although we can follow lots of other cues from the child, its good to have certain information from their families before they stay with us.  

What Does Butterwick House Give to Patients & Their Families?  

What we offer at Butterwick House is holistic respite care. If the child’s family are happy to leave their child in our care for respite stays, then they can do so – that means that the families can have a break, and their child can have a break in a happy, loving, safe and warm environment that is catered to their exact physical, mental, emotional and social needs. We offer a home-like environment for the children we care for, so that their parents can feel comfortable leaving them with us for the duration of their stay.  

We also have our self-contained accommodation upstairs, which offers a place for family members to stay on site, but not on the unit, so they’re close by and can come and see their child whenever they want – this is particularly great for parents whose child is new to the hospice, who might not yet feel comfortable being away from their child. We recently had a Dad of one of our children stay in the accommodation as he didn’t feel comfortable leaving his daughter, he’d never been away from her for any length of time before and it’s a big deal leaving your child in this brand new place for the first time. After a couple of visits, he was comfortable to leave her with us overnight, and she now stays 3 nights per visit and the family is obviously comfortable and happy with that, which is amazing. It makes us feel trusted and like we’re obviously doing a good job for parents to feel comfortable with us looking after their child.  

We’re always at the end of the phone too, so parents can call or message us any time and the Nurse in Charge will respond 24/7.  

In terms of our facilities, we have our main playroom which has a soft-play area, interactive specialist equipment and music and television, we also have our Sensory Room and Sensory Garden, and an arts and crafts area. Each bedroom is set up with specialist equipment so we can safely move children to where they need to be and sleeping equipment that meets the child’s needs. We have self-contained accommodation for family, which is currently undergoing a refurb, that we’re very excited about. 

Our Sunflower Room is a place of rest and care for children who have sadly died. Its use isn’t limited to children who we have cared for so any child or young person who has died can use the Sunflower Room. Families can come and stay, and be with their child for as long as they are able to stay in the Sunflower Room, which is usually just before their funeral service. 

You’ve been here for 26 years, how do you think we’ve evolved over that time?  

The main reason for our existence is the same. We’re here to care for children with life-limiting conditions. But the breadth of care and provision of care has of course changed over that time, because we know more, we understand more, the levels of best practice have changed since 1999, and we have evolved to keep up and excel wherever we can in delivering the best possible care to the children who use our services. I also think that the level of holistic care we provide has evolved over that time, the things that makes us so vastly different from a medical setting is the elevated levels of wellbeing care that we provide not only for the children we care for, but really importantly, their families. It’s all of those extras that make a huge difference to a family, that medical settings aren’t designed to provide.  

I think one of the best things to have happened in the last 25 years is the length of time we can care for a child, we have our Young People’s wing on the Unit, which is in a separate area and is set up to care for children right up until the age of 25, that’s a major difference as it used to be 18, and then the local authority funding would just stop.  

You personally knew Mary Butterwick very well, why do you think she expanded our services to provide care for children?  

I just think it was a continuation of the adult’s services, Mary recognised that there wasn’t much Hospice care for children out there and wanted to expand what we were already doing for adults to children who required it. Mary cared so much about people, she really was amazing. She was incredibly enlightened, and way ahead of her time!  

We want to take the opportunity to thank Jen, and the rest of the Children’s Hospice team for their hard work, dedication and commitment. What you do makes a huge difference to the lives of local children living with life-limiting conditions.