Vuzion and Cobweb are supporting the Do Something Marvellous campaign – run by Roald Dahl’s Marvellous Children’s Charity – because of employee David Barnsley Parsons, who has first-hand experience of epilepsy through his daughter Harriet.
Harriet had her first seizure last summer when she was two and a half years old and has since had a further four prolonged seizures.
Epilepsy is the most common significant long-term neurological condition of childhood, with an estimated 112,000 children and young people diagnosed with epilepsy in the UK.
“Each time Harriet has a seizure it involves an ambulance trip to hospital and monitoring to make sure she is recovering from the episode as expected. This is followed by a review of her medication dosage.
“Harriet’s seizures to date have happened whilst she is asleep, which adds another layer of concern and worry around monitoring her.”
Roald Dahl Specialist Nurses are located all around the UK in areas of greatest need and support seriously ill children and their families. There are currently Roald Dahl Epilepsy Specialist Nurses at Southampton General Hospital and Queen Alexandra Hospital in Portsmouth (where Harriet is being supported).
“Rebecca and Liz [Roald Dahl Nurses] have been simply amazing at helping us as parents feel more in control with what is ultimately an out-of-control experience. Their support and compassion has been invaluable.
“Whilst it’s never going to be easy as a parent to see your child having a seizure, knowing there’s a plan in place to deal with it and to follow up on next steps afterwards, helps us to know we’re doing all we can for Harriet in that situation.
“As she grows, her medication will need to be under constant review to make sure it’s at the right level to prevent her seizures ongoing, but Roald Dahl Nurses will be there to support us all along this journey.”
In the past month, the company has raised over £3,000 and plans to continue fundraising to meet the growing need for more Epilepsy Specialist Nurses in the NHS.
Roald Dahl Nurse Rebecca Case, who is supporting Harriet and David at Queen Alexandra Hospital in Portsmouth, said:
“I love the variety in my work and meeting different people, like Harriet and David. The most important aspect for me is the chance to make a real difference by providing timely and evidence-based advice and support to help children and their families manage and live with epilepsy. It is a great honour to be part of their team.
“Managing their epilepsy is a balancing act, which involves working out the interplay between their medical conditions, their physical and emotional needs and their treatments and then working with the child and their family to manage their epilepsy and provide support and information that is relevant to them.
“Epilepsy is much more than a seizure and can affect emotional wellbeing, mental health, behaviour, education, interpersonal relationships and physical health.”
Research has shown that specialist nursing can improve patient safety and health outcomes, as well as deliver significant emotional benefits to families. The Roald Dahl Nurse role includes organising and co-ordinating tests, treatment, and care in a holistic, individualised way, to improve the quality of life and outcomes for the child or young person and their family.
Louise Griew, Chief Executive at Roald Dahl’s Marvellous Children’s Charity, said:
“Too many seriously ill children and young people experiencing epilepsy do not have access to a specialist nurse. We want to change this.
“We’re extremely grateful to David and everyone at Vuzion and Cobweb for their fundraising efforts and would encourage other people and businesses in the area to #DoSomethingMarvellous and help us fund a new specialist nursing post in the NHS.
“This will provide a vital lifeline to hundreds of children and families – like Harriet and David – supporting them both clinically and emotionally.”
A recent study by Sheffield Hallam University found that Roald Dahl Specialist Nurses, regardless of their speciality, location, organisation or service focus, have a ‘profoundly positive impact’ on patients, their families and other stakeholders around them.
Do Something Marvellous and help fund a new children’s nurse. Give a vital lifeline to seriously ill children and their families. Please donate at www.roalddahlcharity.org/marvellous.