Roald Dahl’s Marvellous Children’s Charity Evaluation Project

This week’s Blog is written by Dr Candice Pellett OBE, RN, DN, Queen’s Nurse,Project Manager, Roald Dahl’s Marvellous Children’s Charity. You can follow Candice on Twitter at @candpel.

Roald Dahl’s Marvellous Children’s Charity (RDMCC) recently announced an educational partnership with Sheffield Hallam University to undertake an evaluation project to demonstrate the value and impact of 20 Roald Dahl specialist children’s nursing posts.

RDMCC exists to make life better for children and young people with serious life-long conditions. Roald Dahl’s stories were known for being about children undergoing serious challenges and Roald Dahl himself was known for his imagination. These are the two lynchpins of the work of the charity; supporting groups of children who have considerable challenges and developing or supporting innovative approaches to healthcare using the imagination of children, their families and healthcare professionals.

The charity defines serious life-long conditions in the following two ways: progressive conditions without curative treatment options (e.g. Batten disease, mucopolysaccharidoses etc.); and irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death (e.g. sickle cell disease, epilepsy, various neurological conditions, haemophilia etc.). The charity is particularly interested in specialist nursing posts focusing on these under-supported conditions and also posts that are seen as innovative, examples of this are the establishment of posts supporting the transition of care of young people from paediatric to adult services and our first ever Roald Dahl SWAN Nurse who cares for children with undiagnosed conditions.

Our nurses bring their specialist knowledge into home and community so that hospital visits are minimised. They teach their young patients and families’ resilience in handling their illness. They build confidence and strength. They innovate. They explain and co-ordinate the child and young person’s healthcare which can often be complex and confusing for the families. They even save the NHS money. One grateful mother put it in a nutshell. “We feel nothing is impossible with our Roald Dahl Nurse on our side.”

Since 1992, when life began as The Roald Dahl Foundation, the charity has helped improve the lives of thousands of children and young people with serious illnesses. There are now more than 70 Specialist Nurses working across the UK providing expert help and support to families affected by serious long-term conditions.

The charity believes that specialist nurses play a vital and under-appreciated role in the healthcare of seriously ill children, and thus the charity has decided to independently evaluate their role. The evaluation project led by Sheffield Hallam University aims to demonstrate the outcomes delivered by Roald Dahl Nurses through their work and the impact this has on the children and young people and their families. It will also show the cost savings made to the NHS, in turn, highlighting the real difference made to beneficiaries and the NHS Trusts in order to help fund additional nursing posts in areas with the greatest need. The project will seek to evaluate the effectiveness of the Roald Dahl Nurses by reviewing the social and demographic profile of their caseloads, the conditions they treat, as well as the age groups of the children and young people in their care. The project will also examine each nursing post from the perspective of the post-holder, the Head of Children’s Nursing, the multi-disciplinary team, as well as the children and young people and their families who form the caseload of the Roald Dahl Nurse. A busy year of work lies ahead with project completion expected in 2020.

 

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