Measuring the value of Roald Dahl children’s nurses and their marvellous medicine

The charity is asking patients and families about the NHS care its specialist nurses offer

The charity is asking patients and families about the NHS care its specialist nurses offer

Roald Dahl specialist children’s nurses care for seriously ill children and young people
and support their families to navigate often complex care pathways

There are a number of charities that fund nurses into the NHS. I am currently working as a project manager for Roald Dahl’s Marvellous Children’s Charity, where I use my nursing experience to help evaluate the value and impact of the Roald Dahl specialist children’s nurses.

The aim of the charity is to ensure that every seriously ill child has the best possible healthcare, by creating and funding specialist children’s nursing posts in the NHS. The focus is on placing expert nurses specialising in health conditions that are underfunded into the areas of greatest need or deprivation across the UK.

Our specialist nurses provide care and support to seriously ill children, young people and their families at home, in school, in the community and in hospital. The nurses are senior clinicians with expert knowledge in their specialist area. In addition, they provide training and education to teachers and health and social care professionals, including other nurses, who are involved in the care of the young person.

Challenging times

Where needed, support can be provided from birth and in the child’s early years, but certainly from diagnosis. During this very challenging time, the Roald Dahl specialist children’s nurses make the complexity of a young person’s healthcare pathway much less alarming for parents and families.

The charity also believes that the trusting relationship that families have with their nurses has a positive impact on the everyday lives of the children and their siblings. But it is often difficult to prove the value of a nursing role.

Roald Dahl’s Marvellous Children’s Charity has decided to independently evaluate the value and impact of its specialist children’s nurse role because it seems an often under-appreciated one in the healthcare of seriously ill children.

Demonstrating outcomes

With little published evidence in this area, the project, led by our educational partner Sheffield Hallam University, aims to demonstrate the outcomes delivered by Roald Dahl specialist children’s nurses and their impact on children, young people and families.

By using a mixed methods approach, the research team are evaluating what is, in effect, a ‘complex healthcare intervention’. 

Roald Dahl: beyond specialist nursing

In addition to direct nursing care, Roald Dahl’s Marvellous Children’s Charity provides grants to families of children with long-term health conditions that are facing hardship. These grants are often a lifeline for families and fund practical items such as specialist equipment, the cost of travel to visit their child in hospital, and art, music and play therapy not available on the NHS.

The charity also invests in other health professionals, including occupational therapists and a play therapist.


Monitoring outcomes

In addition, the project will examine each nursing post from the perspective of the post-holder, the head of children’s nursing, the multidisciplinary team and the children, young people and their families who are included in the nurse’s caseload. 

It will review the social and demographic profile of the nurses’ caseloads, including the ages of the children and young people in their care and the health conditions they treat. We expect to complete the project in 2020 and I will be sharing more information as we progress with the research.

Roald Dahl nurse Kirsten ​​Johnson

Learning to demonstrate value

Recently, I met Kirsten Johnson, a Roald Dahl Sapphire Nurse who works with children who have epilepsy. Ms Johnson took part in the RCN’s Demonstrating Value Programme, and her work illustrates how the principles of economic assessment can be applied in practice to demonstrate value.

During the programme she learned new skills, including how to demonstrate her value. In today’s economic climate it’s an important skill to have gained. Her case study from the programme is a fascinating read and well worth accessing. 

We hope the findings from our evaluation will help us to secure more partnerships with NHS trusts and gain more funding from companies, foundations and individuals.

At a time of economic uncertainty and increasing pressure on healthcare resources, it has never been more important for nurses to demonstrate the value of what we do. It isn't enough to believe we are making a difference – we have to provide the proof.

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Candice Pellett is a Queen’s Nurse and project manager at Roald Dahl’s Marvellous Children’s Charity

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