A parent of a seriously ill child commented: "Our Roald Dahl Nurse has been a beacon of light in our darkest of hours."
Roald Dahl Nurses support children and young people across the UK, who are affected by complex, lifelong illnesses that are under-funded and under-resourced by the NHS – including epilepsy, rare diseases, sickle cell anaemia and neuro-muscular conditions. The nurses also help young people as they transition into adulthood.
The report finds that the third sector is playing an increasingly important role in supporting and maintaining the UK’s health and social care system, particularly in finding the funds to cover activity that would otherwise be considered ‘desirable but not essential’ by senior NHS management.
The report identifies four impact areas of the specialist nurses:
- Improved quality and experience of care: providing families with information about the nature of the condition, and prognosis and treatment options related to their child’s conditions. The nurses act as the ‘one point of contact’ into the service for both parents and health professionals alike
- Provision of holistic family-centred care: family-centred care is a core component of the care given by the nurses and presents a shift from traditional patient-centred care to ensure it supports individuals within their family unit
- Improved efficiencies and cost-effectiveness: the nurses present themselves as ‘active change agents’, introducing a suite of interventions that they feel could lead to reduced waiting times, A&E visits, hospital admissions and duration of hospital stay. They focus on increasing efficiency, reducing wastage and improving patient experience
- Demonstrating leadership and innovation: many aspects of the work of Roald Dahl Specialist Nurses are synonymous with practice at an advanced level
The independent evaluation, Marvellous Nurses: the role, impact and contribution of Roald Dahl Specialist Nurses, was undertaken to better understand the contribution of Roald Dahl Specialist Nurses to children’s healthcare from the perspectives of multiple stakeholder groups.
The nurses achieved a score of 9.47 out of 10 for how satisfied families are with the care they receive.
One parent commented: “Our child has been transformed since our initial visit with the Roald Dahl Specialist Nurse and consultant; we were in a state of crisis, unable to manage pain, sleepless nights etc. and now our life has been so settled and that is 100% down to the service we received from the Roald Dahl Specialist Nurse and the [clinical team].”
The research has established that Roald Dahl Specialist Nurses exhibit a high degree of insight into their role beyond the clinical care they provide. While these nurses express their core attributes as patient advocacy, being passionate, empathetic and motivational, the parents they support express these qualities as “a willingness to go the extra mile”, a friendly and impartial person, providing emotional support and advocating for the parent and child.
It finds that Roald Dahl Specialist Nurses work across professional boundaries and outside the traditional scope of nursing practice, expanding their role to include supporting families in every possible way, including helping families to get access to social services, financial aid and housing benefits, amongst other services.
The research project was led by Professor Julie Nightingale, supported by a Sheffield Hallam research team of registered children’s nurses – Helen Monks, Tanya Urquhart-Kelly and Lesley Saunders. Dr Nancy Ali, Rachel Ibbotson and Dr Robin Lewis also supported the project.
Professor Julie Nightingale, head of research for the allied health professions department at Sheffield Hallam University, said: “With complex and lifelong children’s conditions, clinical care is so often fragmented and difficult to access. This requires parents to navigate multiple complex systems within and beyond healthcare to ensure even basic care for their children. The Roald Dahl Specialist Nurses are vital care navigators, reducing the need for unscheduled hospital visits and crises, and allowing parents to spend more time being ‘mums’ and ‘dads’. The difference they make to children and their families is huge, with parents describing them as ‘amazing’, ‘a godsend’, ‘invaluable’, ‘incredible’ and ‘worth their weight in gold’. It is not an unreasonable ambition for all children with complex and lifelong conditions to be able to have access to family-centred care such as that provided by the Roald Dahl Specialist Nurses.”
Louise Griew, chief executive at Roald Dahl’s Marvellous Children’s Charity, said: “As an organisation that provides specialist nurses and support for seriously ill children, we are so proud of the work our Roald Dahl Specialist Nurses do in improving the healthcare outcomes and life quality of these children. The Marvellous Nurses report showcases and evidences how important Roald Dahl Nurses are to families - we hear that from parents of seriously ill children all the time. The work Sheffield Hallam University has done really exhibits the impact our nurses have on their healthcare systems and we will use this valuable information to create more partnerships with NHS Trusts and Health Boards across the UK as we believe that every seriously ill child deserves a Roald Dahl Specialist Nurse. A big thank you to Sheffield Hallam University for undertaking this study and to all of the nurses and families who participated.”
Roald Dahl’s Marvellous Children’s Charity was established in 1991 by Roald Dahl’s widow Felicity, shortly after his death. There are currently 82 Roald Dahl Specialist Nurses caring for over 24,000 seriously ill children and young people across the UK. Roald Dahl Nurses are specialists at providing support, information and practical care for seriously ill children and young people, working in NHS Trusts and Health Boards across the UK.
Sheffield Hallam University has recently launched its Civic University Agreement that includes a commitment to expand its research programme to improve health outcomes for people in the region.