FAMILIES with chronically-ill children will be given a helping hand by a new specialist nurse – the first role of its kind in Lothian.
The charity WellChild has funded a new post within NHS Lothian to provide a children’s nurse who can help youngsters with exceptional health needs receive the specialist care and treatment they need at home.
Our target is for every seriously-ill child to have access to a children’s nurseLinda Partridge
Senior charge nurse Xanthe Baker will be based within the Lothian Exceptional Needs Support Group, supporting families in Edinburgh and the Lothians by working to reduce the time children have to spend in hospital by arranging and coordinating the care they need at home and providing emotional and practical support for the whole family.
She said: “I will be working closely with families already in the service as well as families who will be going through transition from hospital to home and transition from paediatric to adult services.
“I hope to improve the experience for all families and look forward to the challenges this will bring.”
The WellChild Nurses programme was established to address a clear gap in the provision of care and support for sick children with long-term serious illness and complex conditions.
Ms Baker will help to plan for a child’s transition from hospital to home, as well as providing nursing care at home and training parents to use equipment such as ventilators.
She will also help to organise respite care for parents and provide emotional and practical support for families.
In addition to keeping families together and benefiting a child’s development, the charity has also found it is often more cost-efficient to care for a child at home than in a hospital setting.
Julie McGill, clinical nurse manager for community at WellChild, said: “The WellChild nurse in Lothian will provide a single point of contact for families in relation to the agreed package of care for their child and when required lead and support the transition of the young person and their family into adult services.
“She will ensure each family is fully engaged with and involved in all aspects of the agreed outcomes in order for families to feel confident and supported to care for their child at home.”
Each nurse has a caseload of up to 50 families, but there are hundreds more who could benefit from access to this kind of support.
Linda Partridge, director of programmes at WellChild, said: “We have worked to make sure that the essential service now provided by WellChild children’s nurses in regions of the UK have a long-reaching impact.
“Our target is for every seriously-ill child or young person to have access to a WellChild children’s nurse, and I am delighted that we have now been able to extend that support into this part of Scotland.”
The charity’s pilot Children’s Nurse programme began in 2006, and its success has already resulted in a number of posts across the UK.
The first WellChild nurse in Scotland was Aileen Crichton, who took on the role for Ayrshire and Arran in 2006.
Specialist nurse can act as an ‘advocate’ for families
ONE child benefitting from the extra support is 15-year-old Laurel Reid, who has an undiagnosed neuropathy which leaves her with very limited movement as her muscles are weak.
The Newhaven teenager was only nine months old when she was rushed to hospital with pneumonia and doctors realised she had damage to the casings of her nerves.
Laurel now needs round-the-clock care and she is dependent on a ventilator to breathe.
Laurel’s mum Susan said: “There are so many healthcare professionals involved in Laurel’s care that it can be quite confusing and intimidating.
“It is great to have someone medical involved like Xanthe who can bring it all together but also be an advocate for Laurel and our family.”