A mum is backing the launch of a free 24-hour phone line which will provide more families like hers the round-the-clock advice they need to care for children like her life-limited son.
Jenny Alger, 40, said she’s delighted Keech Hospice Care is launching the service which will provide specialist support to parents and carers of children with terminal and life-limiting illnesses seven days a week.
The new children’s advice line will enable the charity to reach more families out in the community, not just those who already access Keech’s services, as well as professionals.
“My son Jacob, 3, has Dravet Syndrome,” said Jenny. “This means he can have a seizure at any time. The longest we have been without a seizure in his whole life is about six weeks and so making sure we have the support we need on hand is essential.
“Jacob can be fine one minute but he’ll become ill really quickly the next. We have grown more confident in learning how to deal with it but having Keech on call 24 hours a day is a lifesaver for us and would be for any family like ours too. Just being able to speak directly to the nurses’ station and get advice on what to do straight away is amazing.
“I’m delighted this service is being launched and hope it will support families like mine across Bedfordshire, Hertfordshire and Milton Keynes with the problems they are facing every day. The support you get from Keech Hospice Care is a lifesaver,” said Jenny.
The 24-hour children’s advice line will connect families to the hospice in Luton and will be answered by a qualified nurse no matter what time of the day or night. Advice from a specialist nurse will also be available when needed.
Sonya O’Leary, Children’s Lead Nurse at Keech Hospice Care, said the new advice line will allow the charity to support more families by signposting to other services who may be able to offer further help, or just by providing a listening air when they’re in need.
“Launching this new service is an innovative step for us. Access to specialist advice on palliative care over the phone 24/7 is not widely available in the UK, so we want to reach out to as many families in our local community as we can, as we believe anyone facing a terminal or life-limiting illness should receive excellent care and support.
“Most of our families have several consultants, doctors and nurses involved in their child’s care – all looking at individual aspects of their illness. We look at that child and family’s needs as a whole, take a holistic approach and try to reduce the need for them to go to hospital as much as possible,” said Sonya.
The 24-hour children’s advice line will be available to parents and carers of children with terminal and life-limiting conditions and professionals across Bedfordshire, Hertfordshire and Milton Keynes by calling 0800 035 6497.