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Roald Dahl’s Marvellous Children’s Charity is working in partnership with Sheffield Hallam University on an evaluation project to demonstrate the value and impact of Roald Dahl Specialist Children’s Nurse posts. Project manager Candice Pellet gives us a progress report

Roald Dahl’s Marvellous Children’s Charity is working in partnership with Sheffield Hallam University on an evaluation project to demonstrate the value and impact of Roald Dahl Specialist Children’s Nurse posts that have been established since 2016. There are now more than 70 Roald Dahl Nurses, working across the UK and providing expert help and support to children and young people affected by serious long-term conditions. The aim of the charity is to support groups of children who have considerable challenges and to develop or support innovative approaches to healthcare using the imagination of children, their families and healthcare professionals, in the spirit of Roald Dahl’s much-loved stories.

The charity’s focus is establishing specialist nursing posts for children and young people with under-supported conditions. Its interest also lies in setting up posts that are innovative such as roles supporting transition of care of young people from children’s to adult services and its first ever Roald Dahl SWAN Nurse who cares for children with undiagnosed conditions.

One of the charity’s nurse specialists currently has a young girl on her caseload who had a stroke at birth and was diagnosed at 1 year old with complex epilepsy. She is also partially sighted. The child could be very unkind and violent to her sibling and was often very aggressive due to effects of her medication. Her sibling became very withdrawn whereas she was usually an outgoing little girl. Mum found this hard to witness as her eldest daughter wasn’t old enough to understand why her sister was violent towards her.

In July 2017 the Roald Dahl Nurse was asked to support the family as the child’s behaviour was having a huge impact on everyone. Before the Roald Dahl Nurse was involved, the child was supported by a keyworker who made sure that the professionals involved in her care were working together. However, there was no specialist support from an epilepsy nurse. The Roald Dahl Nurse identified the impact of the diagnosis on the sibling and was able to help by signposting and referring the family to services to enhance the life of the sibling. She was referred to Young Carers, a psychology service, and attended the epilepsy support group run by the Roald Dahl Nurse at the hospital. These activities all helped to enable the sibling to understand more about her sister’s condition and not to be so scared. With support, the sibling has grown and flourished; singing in the school choir, joining the British Gymnastics Association, attending the support group with other children and making new friends along the way.It has taken months of treatment to realise that her sister loves her, and she has even been taught how she can save her sister’s life in an emergency.

The Roald Dahl Nurse Specialist has also supported the family with the transition of their younger child starting school. She visited the school to meet with staff and developed a care plan to ensure they were all fully aware of the complexities of the child’s epilepsy. All the staff have now completed the epilepsy training. This has also helped to reduce anxiety for the whole family as well as the school staff.

The charity believes that specialist nurses play a vital and often under-appreciated role in the healthcare of seriously ill children, therefore the charity decided to independently evaluate the nurses’ role. The project, led by Sheffield Hallam University, aims to demonstrate the outcomes delivered by Roald Dahl Nurse Specialist roles. and the impact this has on the children, young people and families. It will also show the cost savings made to the NHS and accentuate the real difference made to beneficiaries and NHS Trusts in order to help fund additional nursing posts in areas with the greatest need.

The project will evaluate the effectiveness of the Roald Dahl Nurse Specialists by reviewing the social and demographic profile of 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, and the children, young people and their families who constitute the caseload of the Roald Dahl Nurse Specialist. Completion of the project is expected in 2020/21.

Dr Candice Pellett OBE, RN, DN, Queen’s Nurse is Project Manager at Roald Dahl’s Marvellous Children’s Charity