Head of NI Children’s Hospice Services Grace Stewart talks to Audrey Watson about helping families make the most of every moment
A quote on one of the pages of the Northern Ireland Children’s Hospice website reads: ‘We firmly believe that each day is about living, not about dying. Even if we know that the process of dying has begun, we still look for opportunities to live life to the full’.
The words are from Grace Stewart, a nurse and now Head of Children’s Hospice Services, who has worked at the charity since it opened its building, Horizon House in Glengormley, almost 21 years ago.
“People automatically assume that the Children’s Hospice is a very sad place and it’s anything but,” says Grace. “Of course, there are times when it’s sad and when it’s difficult.
“But our philosophy is to live life to the full, whether that life is just a few minutes or a number of years.
“For children who come here, it’s very much about making the best of every opportunity, regardless of their medical or nursing need.
“We have a swimming pool, a multi-sensory room, a soft play area, a ‘den’, a large cinema screen so that those with visual impairments, or who find it difficult to focus, can watch DVDs, and we have an ‘art room’ which is a very special place where families can generate memories by creating art together or painting feet and things like that.
“Plus, we have beautiful grounds where the children can get out and about in their wheelchairs and enjoy outside space.
“It’s very much a place where we value the experience of the family as a whole. Where it’s about creating a space where mum and dad can step back from the caring responsibility — step back from being the mum or dad with a nurse hat on, and just be plain mum and dad. Not just to the child who is ill, but it also gives them a bit of space to be with their other children who may sometimes feel a little left out because so much care and attention (and rightly so) needs to be placed on the child with the medical condition.”
Grace, who lived in Bessbrook until her family moved to the Newtownabbey area when she was six, always knew that she wanted to work in healthcare, but wasn’t sure where.
Describing herself as a very quiet and very shy child, it was her mum Hilary who suggested nursing after spotting an advertisement back in 1988.
She says: “My dad Michael was a primary school headmaster, and we grew up in an environment at home where we were taught to be objective about things and be very appreciative about things, and were encouraged to help anyone and anywhere that we could.
“I’d always been drawn to looking after people. I was the oldest of four children and the only girl. One of my younger brothers, Grant, died when he was only 15 and I was 18.
“He had a congenital condition and I suppose that did perhaps put the notion of working in healthcare in my mind. However, I would never have dreamed that this is where I would end up, but admittedly my childhood has given me a bit of an insight into what families go through.”
Grace spent three years training to be a Registered General Nurse (RGN) — one of the last groups to train for that qualification — and then worked in Belfast City Hospital for 10 years, during which time she gained a Diploma in Children’s Nursing.
In 2001, when the Children’s Hospice opened Horizon House, she began working night shifts as a Staff Nurse.
Since then, Grace has held the Deputy Manager’s role, the Care Team Manager’s role, the Clinical Services role and is now Head of Children’s Hospice Services.
Does she miss working hands-on with the patients and their families?
“I still do the odd shift now and again,” she says. “In my earlier career, it would have all been very clinically focused and I do still miss that. The best way to counteract that is to jump in and do a shift. It helps you connect with the care team and the children and families again.
“I work with a fantastic team of people and it’s always lovely to work with them directly again.”
There is one particular team member who is vital to Grace when it comes to keeping connected to staff and young patients — Winnie, a two-year-old golden retriever.
“Winnie is pretty much a full-time worker at the Children’s Hospice,” she laughs. “She’s a therapy dog.
“She lives with me and ever since she was about eight weeks old, she’s been coming to the hospice, where she parades up and down the corridors, goes into the bedrooms to visit the children and steals food wherever possible.
“She enjoys the kids, and they enjoy her. And she cheers everybody up — the adults and the children.
“A couple of times a day, Winnie and I will do the ‘rounds’ of all the bedrooms and she’ll provide cuddles where needed.
“The Head of Children’s Hospice Services role is very much about being responsible for the delivery of services — here in the building and in the community (Hospice at Home) and also a family support service. It’s also about looking out for opportunities to develop the service.
“I do enjoy trying to make a difference for the future, but the part that I enjoy most about my job is, and always has been, the interaction with the children.
“I have less opportunity to do that now, but I make the most of any chance to interact because it does your heart good and puts what you are doing into focus. Winnie definitely helps me do that.”
Currently the Children’s Hospice has 10 beds, but throughout Northern Ireland at any one time, Grace and the team are caring for around 270 children who are living with a life threatening or life limiting condition.
“We would also be supporting about 70 families who have been bereaved and whose children have sadly died,” she says. “And we continue support for bereaved families for up to two years after a child has died.
“The Children’s Hospice is a regional service, that covers the whole of NI and not just the Belfast area.”
What were the challenges back in 2001 compared to almost 21 years later?
“It was a challenge back then because you’re a new service and anything new obviously takes people a bit of time to get used to,” recalls Grace. “And children’s palliative care has changed dramatically over the course of 20 years.
“When we opened at first, a ‘Peg’ tube — a tube that administers food directly into the stomach — was very uncommon and now that’s basic routine care.
“The complexity of the children we care for has changed dramatically over the years. The number of children with a life limiting condition are growing and the complexity of the medical and nursing care that they live with on a day-to-day basis is getting more and more complex.
“A lot of the children that we would see now really are dependent on us for every aspect of their life.”
Despite the support and positivity offered by the hospice and its staff, the emotional toll such a job takes on workers must be immense.
How do they protect themselves mentally? How do they not break down constantly?
“That’s the million-dollar question,” replies Grace. “I was always taught in my early nursing career that in order to give, and in order to care properly and be effective in your care and to build that true connection, you have to give a little bit of yourself. You have to give something into that relationship.
“I’m not sure that I protect myself, but rather what I do is I find satisfaction. And it sounds a bit weird to say, but even reward, in the service that we provide and the support and help that we can give to people.
“Losing a child is one of the hardest things that a human being can ever face, but as professionals working within this service, we can provide a choice.
“We can’t change what is happening, but we can provide a choice about where and how it happens.
“Families tell us over and over again that when they get that opportunity, it allows them, when they look back on the situation, to have no regrets.
“They feel that they didn’t want that to happen, and it wasn’t OK, but I couldn’t change that it was going to happen and I’m glad that we did it that way.
“There’s great satisfaction in being part of the team that can facilitate that and provide support to families.” Has the job ever really got to her?
“Yes,” says Grace. “A few years ago, I had a bit of a rough patch and I needed to just rebalance myself.
“There are three things that really keep me going. The three ‘F’s I call them — my faith which is really important to me, and which brings me perspective and brings me rest, my family who bring me fun and fulfilment, and my free time.
“I’m really conscious about how I spend that and make sure that I have time for ‘me’.”
Grace still lives in the Newtownabbey area with her husband Geoff, a finance manager, and their two daughters, Bethany (22) who is in her third year of studying to be a midwife, and Judith who will be 18 in another couple of weeks and is studying for her AS levels.
“We are very lucky to live out in the country and I just love being outside,” says Grace.
“We have a little foster pony called Rupert and I go out and take care of him.
“Then there’s Winnie, of course. And we have another dog called Maggie and a cat and all sorts of other things. We have a bench in the garden from where there are beautiful views and I can just sit on my own on the bench and while away half an hour appreciating nature and grounding myself.
“Previously, I’d have packed every moment with doing something, but as I’ve got older, I’ve got better at stopping and just breathing.
“If you work in a place like this and you don’t absorb some of the sadness, not just when a child dies, but also when you see some of the challenges that families face on a day-to-day basis...
“The title of this article is Lives Less Ordinary, but in actual fact, the lives less ordinary are the lives lived by these families, and the love that they have for and pour into their children.
“If you didn’t absorb some of that, there would be something wrong with you.”