Clinical Nurse Specialist (CNS) for Neuroblastoma
Access to specialist support and care for children and families affected by neuroblastoma, an aggressive childhood cancer, is crucial. The CNS will provide specialist care to children and support their parents, in particularly, to navigate the clinical trial pathways for their child.
April 2017 - March 2018
Charity information: Solving Kids' Cancer Europe
Approximately 60% of children with cancer access clinical trials as part of their cancer therapy; and while clinical trials are research experiments, they also represent treatment options for children, which give hope for a cure. But navigating clinical trial pathways is difficult for parents, and the burden of decision-making weighs heavily on their shoulders. Parents need easy access to clear and objective information and help to evaluate the options to be able to make informed decisions.
The CNS will be a dedicated support for children and families affected by neuroblastoma across the UK. They’ll have extensive knowledge about the disease and of all the treatment options available at a given time. They’ll help parents to question and evaluate the clinical trials applicable to their child and to understand the implications and risks. Having visited all treating centres, the CNS will better prepare families for treatment and liaise with local clinicians to enhance communication.
Provide specialist support to children and families affected by neuroblastoma in the UK
Activities» Ensure the CNS has expert knowledge on neuroblastoma and treatment options in the UK, Europe and further afield, and is provided on-going training
» Establish the CNS service as a central resource for key health professionals, organisations and families
» Create information resources on neuroblastoma diagnosis and treatment options, and make them available to families
What success will look like
Families and informal carers will say they feel listened to, informed and confident that they are making the right decisions regarding care and treatment for their child
Raise the standard of nursing care for children with neuroblastoma in the UK
Activities» Provide support to the professional community/shared care settings to develop skills and knowledge to deliver appropriate specialist care
» Actively contribute to the development, production and evaluation of neuroblastoma best practice guidelines
What success will look like
By teaching, research and clinical practice, raising the knowledge of neuroblastoma among staff who rarely nurse children with the disease
The project aims to help and empower parents to make decisions about their child’s treatment, reducing feelings of being overwhelmed and confused. We will measure this through parent feedback on their interactions with the CNS.
The project aims to improve the knowledge base of health care professionals who rarely come across a neuroblastoma case. We will measure this through the interactions the CNS has with hospitals and the feedback we receive from parents and informal carers.
Fostering close working relationships with treating centres, health professionals and families will mitigate against the CNS being on leave or the post being vacant.
Basing the CNS at a centre of excellence (Great Ormond Street Hospital (GOSH)) and the provision of continual training will mitigate against the risk of the post holder not having the required knowledge.
The CNS will be fully supported by the hospital and charity so that they don't feel isolated in this UK-wide role.
We would be delighted to provide quarterly email reports to donors and facilitate an annual visit to introduce them to the CNS and to help them understand the impact the role is having on the lives of children and families affected by neuroblastoma across the UK.
Budget - Project Cost: £68,069Loading graph....
Amount Heading Description £59,369 Salary Year 3 salary top point Band 7 CNS £8,700 Other Expenses Training, mobile phone (12-month period) and UK-wide travel to see children and families
Children and families affected by neuroblastoma can be from anywhere across the UK, and therefore the remit of the CNS will be UK-wide. While the CNS will be based at GOSH, the post holder will travel across the UK to visit families at home or in hospital.
There are approximately 400 families affected by neuroblastoma at any one time in the UK, each can benefit from the specialist support and care provided by the CNS. Because there is no proven curative treatment and families have to navigate the clinical trial pathway which is difficult and overwhelming, the CNS will assist families to digest and evaluate information, empowering them to make informed decisions. Staff in non-specialist hospitals will also benefit from improved knowledge.
Over the past 10 years, we have established ourselves as the leading support charity in the UK for families affected by neuroblastoma and therefore, already have an extensive network of families and professionals which will aid the implementation of this post. Further, as a parent-led charity, we possess the understanding necessary to be able to meet the needs of families through the CNS service, and the passion to successfully deliver the project.
Read more about the Charity running this project.
Solving Kids’ Cancer
Supporting the CNS and helping establish the role as a central resource among its network of neuroblastoma families and professionals, and beyond.
Driving forward establishing the CNS as a central resource for neuroblastoma families and professionals.
Dr Daniel Morgenstern, Consultant Paediatric Oncologist At GOSH
Supporting the CNS, overseeing the project and helping establish the CNS as a central resource for patient families.