I’m Grace Stewart and I lead the nursing team and family support service here at Northern Ireland’s Children’s Hospice.
Here, at our purpose-built Children’s Hospice in Newtownabbey, we’ve been caring for children for almost 20 years. Over that time, we’ve become a unique charity, the only one in Northern Ireland looking after local children who are in the last stages of life; but who still need intensive nursing support to make the most of every month, week or day.
We know that the number of very young babies who now need our help is increasing. Children born with palliative care needs, who just a few years ago would have been expected to pass away in hospital shortly after birth, are now living for weeks, often months. The medical conditions these babies are living with are incredibly complex – and they need round the-clock expert care.
Often the only option for these children is to stay in a specialist hospital environment. So, these wee ones and their parents are stuck there simply because there is nowhere else for them to go.
More and more, families are split apart as parents juggle the needs of other children at home and having to work to keep money coming in. All this, while dealing with the huge uncertainty of how long they have left with their baby.
With the arrival of a new-born, we can’t wait to take them home, introduce them to their brothers and sisters, cuddle and feed them – to be a family. That overwhelming desire doesn’t change when the baby has highly complex healthcare needs and life is counted in days; in fact, the urge is all the stronger.
We knew that the situation simply wasn’t acceptable. We had the skills, the knowledge, the experience to help. We had to act. And so, last September, we created our brand new I’m Coming Home bed – to bring babies and their families home where they need to be. The bed is staffed by a team of highly trained and experienced paediatric nurses – who can stay with the family, providing care 24 hours a day.
The bed ‘moves’ with the child. Most of the time, the baby will need to come to the Children’s Hospice first. That’s so we can take over the medical care from the hospital staff and support the parents as they grow in confidence in caring for their little one – sometimes even hold them for the first time. If we can get the baby’s condition stabilised, we’ll then ‘move’ the bed out of the Hospice and into the family home – and the whole nursing team goes with them.
Now, I have to be honest with you here. Quite often, the medical challenges are so huge, the child is so frail, that they simply can’t make that final journey home. In these cases, the family will spend their final days or hours here at the Children’s Hospice – with us giving their baby the care and attention they deserve in the last moments of their life.
So, the I’m Coming Home bed is a brilliant innovation. But, we have a huge problem – and that’s why I’m writing to you today. The I’m Coming Home bed costs £350,000 per year. That’s the cost of staffing an expert team of nurses for 24 hours, every day of the year. We worked on the plan for this bed with the Health Board and the Public Health Authority and they agreed to give us half of the money. That means we must find £175,000 per year – starting right now. But we just don’t have that money.
How you can help
Our need to find £175,000 per year breaks down to a cost of £479.52 per day – or £19.98 per hour. When you look at the amazing, utterly transforming experience our care gives to a family, I think that’s brilliant value for money – I hope you agree.
Please, today, could you make a donation to keep our I’m Coming Home bed open for the rest of this year? You can give as much as you feel is right for you – because every £19.98 we receive guarantees that we can keep this vital bed available for one more hour.
The best way to explain how vital this bed truly is to families with a life-limited child, is to tell you about wee Caitlin from Belfast – who we managed to transfer out of hospital and into the I’m Coming Home bed in February of this year.
Thank you, once again, for your fantastic support. And thank you, in advance, for anything you feel able to contribute today. We will, of course, keep you updated on how we’ve got on.
From all of us here at Northern Ireland Children’s Hospice, have a wonderful summer with your friends and family.
Head of Northern Ireland Children’s Hospice Services