We are delighted to announce that a HWB team, led by Dr Robin Lewis and Professor Julie Nightingale, has been successful in winning a prestigious two stage tender to evaluate the role of the Roald Dahl specialist nurse. Up against quality opposition, the two principal investigators put together a winning proposal which clearly impressed the Charity’s Trustees.

A little bit about the Roald Dahl specialist nurses

The Roald Dahl specialist nurse role  is aimed at improving the care of children and young adults with a variety of chronic conditions including blood disorders such as Thalassemia, chronic epilepsy, acquired brain injury and neuro-muscular conditions such as dystonia. The posts are funded in the first instance for a period of two years by the Roald Dahl Marvellous Children’s Charity (RDMMC) and thereafter the employing Trust commits to fund the posts for a further period of three years.

Since the first Roald Dahl specialist epilepsy nurse was appointed in 1991, there are now 70 Roald Dahl specialist nurses all over the UK working in both hospital and community settings. Each specialist nurse costs the Charity around £100,000, and consequently there is a clear need to ensure that the Charity’s funds are being spent wisely

The second stage proposal

In addressing a very detailed and complex specification, the second stage proposal submitted by Robin and Julie was unanimously judged by the charity to be the best and most innovative approach to the evaluation. Their distinctive take on the study includes three of the Child Branch Lecturers from the Department of Nursing and Midwifery to undertake the fieldwork.

Suzie Hodgson, Helen Monks and Tanya Urquhart-Kelly are all highly experienced child field lecturers and their knowledge, skills and expertise with children and young people mean that they will be uniquely placed to give the study a perspective that other teams would not be able to provide. They will be able to fully engage with the children, young people and their families, and work with the Roald Dahl specialist nurses from a position of credibility.

The team will be ably supported by Mubarak Ismail, who is an experienced research fellow here in the faculty,  involved in a wide range of research evaluations and consultancy activities. Mubarak brings a multi-cultural perspective to the project with his extensive experience in working with diverse populations.

What will the study look at?

Over the next eighteen months, the team will carry out research on behalf of Roald Dahl’s Marvellous Charity to review the effectiveness of their specialist nurse role, and will specifically evaluate the impact of the specialist nursing services for seriously ill children for the twenty nursing posts that have been appointed jointly by Roald Dahl’s Marvellous Children’s Charity and the NHS from 2016 to date. The study will evaluate the impact of the role upon:

• The nurses themselves
• The employing Trust
• The team that the nurses work with
• Most importantly, the children, young people and their families

The project will consist of a number of inter-related work streams. These will provide the Charity and the participating NHS Trusts with a clear and unambiguous picture of the costs and benefits of the role. It will include talking to the children, young people, their families and carers about the Roald Dahl nurses and interviews with the Roald Dahl nurses themselves.

The timing of the Trust visits will be scheduled up to 18 months after the initial appointment; just before the two year funding from the Charity comes to an end. We will provide the Faculty with regular progress reports and updates over the course of the project, and at the conclusion of the project, we are planning a day conference in partnership with the Charity and key stakeholders to disseminate the findings from the study and to outline the key messages that the Charity may take forward.

Watch this space…