Children's Hospice Week: Mum of Baldock boy with Hurler syndrome backs new research into whether seriously ill children's care needs are met
PUBLISHED: 16:58 24 May 2017 | UPDATED: 17:07 24 May 2017
A mum from Baldock is backing research that will investigate whether seriously ill children's care needs are met as she fights to get the support she needs for her son.
This week, May 22 to 28, is being marked as Children’s Hospice Week by national charity Together for Short Lives.
And Jen Carter, mum of four-year-old Jacob, has thrown her support behind a three-year University of Bedfordshire research project to explore the barriers that stop families from accessing palliative care services.
Jacob has Hurler syndrome – a rare and serious genetic disorder – and Jen said she and the rest of the family were struggling to get the right support.
“Like many families, we’re struggling to get the care needed and we’re exhausted,” said Jen.
“We’ve been trying to get money to get a carer at home to give us a small break. It’s important we employ someone Jacob is comfortable with as he has extreme anxiety, but we’re just coming up against a brick wall to get the support.
“I’m delighted this research is being undertaken and hope it will shine a light on problems families like mine are facing every day.
“Palliative care can transform people’s lives and the support you get is something every family with a child like Jacob needs.”
The research will be carried out by University of Bedfordshire PhD student Georgina Constantinou – who will be based in Luton at Keech Hospice Care, which is funding the research.
Georgina said: “Children’s palliative care is an area where research is limited so this study is incredibly worthwhile.
“It differs vastly from adults’ because there are challenges specific to younger people’s development that reinforce the need for this type of research.
“I’ll be working with families at Keech Hospice Care and studying the experiences of parents like Jen to find out if needs are being met, and to what degree improvement is needed.”
Keech chief executive Liz Searle said the research was a first for the charity.
She said: “Taking on a research student to better understand how palliative care works in the UK is an innovative step for us.
“As a leading hospice, it’s key we generate new knowledge to share at a national level. This research will help Keech Hospice Care to review what we can do better as we work to understand how best to care for children with complex conditions as they live longer.
“We are pleased to be working in partnership with the University of Bedfordshire this Children’s Hospice Week, as we can only be really good at what we do if we have the best and most up-to-date evidence so we can make sure no-one has to face a life-limiting illness alone.”
Gurch Randhawa, director of the university’s health research institute, added: “This PhD is vital as it is one of only a few studies in the UK to explore the perspectives and experiences of parents of children receiving end of life care.”
Findings of the research will be released at key stages over the three-year period.