Meet Roald Dahl Nurse Peter

On International Nurses Day, nurses are celebrated across the globe. Across the UK, there is a growing network of Roald Dahl Nurses whose specialist support is changing children's and young people's lives. We met with one of our Roald Dahl Nurses, Peter, to find out more.

Peter has been making a difference to children for most of his working life. He dropped out of university to join the army but working as a volunteer for a disability charity he realised his vocation might be in health and social care rather than in the military and went back to college to do a nursing degree. What followed was time and training in roles at Great Ormond Street Hospital in London, and in specialist education and brain injury centres across the UK.  Today, Peter is a Roald Dahl Nurse, offering an individualised bespoke, holistic way of nursing to children and young people diagnosed with any one of that group of rare, progressive conditions like muscular dystrophy or spinal muscular atrophy.  "It was when I was doing some work in Bradford I met and worked with a Roald Dahl Nurse and saw what was possible in this specialist role," remembers Peter. " It allows me to get to know and share the journey with these families in a way that might be outside the remit of other nurses.”   In practise this means the freedom to work in a very bespoke way with families. Getting to know them and helping them navigate the complicated health journey they are on throughout their childhood, co-ordinating appointments  and being a point of contact families can call on to join them at meetings with specialists, or to talk them through their concerns afterwards. They work as part of a team in hospitals and in the community to help families access the services they need.  “When a healthcare journey is this tough and complicated, we know families’ voices can go quieter, their challenges remain unseen,” says Peter. “By offering support at home as well as in hospital I can help them access the support – say in their community, home or school - they need and deserve.” Working in child development, Peter saw children with neuromuscular conditions come through and explains this is a very specialised area and, for a long time, had been focused on young children with very complex life-limiting conditions.   “The outlook is changing,” says Peter. “Treatments for this group of conditions (from improved cardio and respiratory care to gene therapy) have changed dramatically in the years I've been a nurse.”  Peter’s team now have around 450 young people under the service in the regional centre in Leeds and stresses every child is different and can have a range of medical needs and face tough ability changes to their muscles and the loss of mobility. “But whatever their situation, they want to be understood for who they are, and where they are and what they want to be. Young people living with these conditions go off to secondary school, go off to university, move into jobs, going away with their friends. What our children and families all have in common is the desire to feel valued, and heard, to understand what is happening to them, and to have the chance to participate in the best way they can to live their lives.” says Peter.

"There are so many amazing professionals in the NHS, and I work alongside brilliant people in this Trust,” says Peter. “In this role, though, there is something special and important about being on the whole journey with families working to remove some of the stress and anxiety they might feel, and the barriers they might face to the life they want and deserve.” “Sometimes it’s hard for families to talk about the future. But we hope we can support them and work with them as treatment and therapies change and improve. What strikes me with every one of them is their resilience. This isn't a life they choose but they get on with stuff, and they do amazing things. I am amazed every day by the young people who, in hospital or with significant health difficulties at home or school, are still so positive and strong, looking out for others and wanting to thrive. Seeing and supporting that is a privilege." Roald Dahl's Marvellous Children's Charity fundraises to establish more Roald Dahl Nurses like Peter, across the UK. If you can, please donate today.