Harry spent the first six months of his life in hospital. Now 12, Harry has chronic lung issues, a severe curve in his spine, epilepsy, severe developmental delay and is registered blind. He is non-mobile, is tube-fed and requires oxygen throughout the night. For his mum Sam, from Kent, caring for Harry is a full-time job. Throughout Harry’s life, he and his family have benefitted from the hospice at home care that their local hospice, ellenor, provides.
“When I first heard the word ‘hospice’ I thought, ‘oh my god, my child is going to die.’ But I quickly came to learn that hospices aren’t always about dying. ellenor were there before we were even discharged and I’ll never forget the first time we met them. It was Christmas Eve and there they were, with a hamper, things to make a Christmas dinner with and presents for both Harry and my daughter. Since then, they’ve been the one constant in a very uncertain life and I don’t know what I’d do without them.”
A helping hand right at home
As a single mum with two children, having hospice care directly delivered at home allows her to keep her family together. Every month, their nurse Tina visits for a check-in. She is always at the end of the phone to support Sam when she is worried, or simply needs someone to talk to.
Before Harry, I didn’t know that this whole world existed. Having hospice care at home is a blessing.
“Tina rings me all the time to check in. When Harry has a chest infection, I will ring her and she will come right over. Not only does she do a full set of observations, she’ll call the GP on my behalf to get him antibiotics or tell me to take him to hospital.”
Lifeline care and a source of comfort
Over the years, Sam and Tina have formed an incredible bond.
“Tina is bubbly, reassuring and always calms me down if I am panicking. Tina is Harry’s nurse, and she is my friend. As soon as she comes through the door, I know everything will be okay. Because as well as being able to look after Harry, she is a huge source of comfort to me and my daughter too.”
As well as nursing care at home, ellenor has helped Sam, Harry and his sister make countless memories over the years. From music therapy and a visit to Disneyland Paris, to countless days out and introducing Sam to some life-long friends, ellenor has supported them every step of the way.
“I do everything for Harry, but as a single mum with another child, it can be isolating, even lonely sometimes. My children are absolutely everything to me, and that is why I will be forever grateful for everything ellenor has, and continues to do, for us all.”
Saving the NHS bed spaces and money
Hospice at home care helps keep children like Harry out of hospital where possible, saving the NHS bed spaces and money.
“ellenor is the step between a stay in hospital and staying at home. If those services weren’t available, and we didn’t have wonderful nurses like Tina, I honestly don’t know what I’d do. They are invaluable and are my lifeline. They are so important to me and my family and keep us together.”
Sam is joining our campaign to save the vital £25 million Children’s Hospice Grant, which is due to end this year. If that happens, it means that children’s hospices in England will be forced to make cuts, which will have a devastating impact on families like Sam’s. You can help – add your voice and let the Government and NHS England know that the grant must be saved.
To think that there could be a world without hospice at home care breaks my heart, because I know first-hand how much of a difference it has made to me and my family.”