Terminally Ill Children Just Can't Wait!
An innovative service that aims to give terminally ill children essential equipment within 72 hours has been launched by the UK’s leading children’s disability charity, Newlife Foundation.
Currently, one in three disabled UK children are living without a piece of essential equipment at any given time, and terminally ill children are particularly at risk of dying before they get what they need. These children may have to access hospice care early, due to lack of home-use equipment.
Newlife Foundation for Disabled Children has created the Just Can’t Wait! service to combat the delays that hamper children getting the equipment they need, when they need it most. The Just Can’t Wait! service is specifically designed for children in the end stage of their life, who need equipment such as specialist beds, wheelchairs and hoists.
Newlife Nurse Manager, Karen Dobson RGN, says: “This service means a special bed costing around £6,000 can be released and, when no longer needed, will be collected quickly, professionally refurbished, clinically cleaned and made ready to benefit another child. This means one bed can help four to six children.
“Good for children, families and the environment, we hope that this service will help to support more children by front-line professionals being able to offer this free priority equipment loan.”
Newlife currently spends over £1.25 million each year providing equipment grants to children across the UK. However, because stock has to be ordered, the process of a child getting the right equipment can still take time. By holding equipment ready to go, the Just Can’t Wait! service answers that problem by loaning specialist equipment to those most in need at just the right time. With a delivery time of around 72 hours from agreement, it can keep pace with the changing requirements of the child.
There is no cost to the family or statutory services and professionals involved in the child’s care can, with the support of an occupational therapist or physiotherapist to define the specification, apply for the service via telephone. There are no long forms to complete and the terms of the equipment loan are dealt with by Newlife direct with the family, so it’s easy for professionals to access.
The new service complements Newlife’s existing activities, which include a national Nurse Helpline for families and Equipment Grant Service which provides a whole range of equipment to help disabled children and young adults across the UK.
Newlife has been partnered in this service with leading suppliers such as Chunc, Theraposture and Midshires, who will not only provide, install and train families about how to use the equipment but will also manage delivery and collection.
Catherine’s story, Aged two - Cornwall
“In the last four months of Catherine’s life her Newlife buggy allowed us to take her out and enjoy memorable moments that otherwise wouldn’t have been possible. As a three year-old with a very painful, degenerative condition Catherine was unable to walk and suffered from terrible spasms. Having outgrown her old buggy, her Newlife buggy with its large, reclined seat and inflatable tyres that cushioned the ride made a huge difference to her quality of life. Cramped up in her old buggy, she had been uncomfortable. In the new, bigger buggy she was happy and relaxed. This meant we could take her out in the fresh air and sunlight for trips that she loved. Having a service that would offer this kind of equipment on loan with virtually no delay I know would make a huge difference to children like Catherine.” – Catherine’s mum.
ACT* Chief Executive, Lizzie Chambers, says: “ACT welcomes this innovative and much needed new service from the Newlife Foundation. The supply of essential equipment within 72 hours will remove a huge burden from the shoulders of families caring for terminally ill children at a point when time is so precious to them.”
* The UK-wide charity working to achieve the best possible quality of life and care for every child and young person who is not expected to reach adulthood.
Children’s Hospices UK** Chief Executive, Barbara Geld, says: “We applaud the establishment by Newlife Foundation of the Just Can’t Wait! service for children and young people who are nearing the end of their lives. The provision of much needed equipment – within a tight turnaround of just 72 hours after a request is made – will be hugely welcomed by children and their families at a critical time in their lives.”
** Children’s Hospices UK is the national charity that gives voice and support to all children’s hospice services.