Friday, 19 April 2024
Friday, 19 April 2024

Mother leads campaign to fund more specialist nurses in the NHS

The mother of a child with epilepsy and other serious health conditions is leading a campaign to fund more specialist nurses in the NHS, following the ‘life-changing’ impact of a Roald Dahl Children’s Nurse at Ashford and St. Peter’s Hospital.  

Suzannah Goodchild (52) is the mother of Max (8), who is diagnosed with a GRIN2D-related disorder and epilepsy. Max is unable to walk, or talk and is dependent on a tube for feeding. He is also registered blind and suffers regular seizures.

GRIN2D-related disorders can cause a range of neurodevelopmental conditions, with the symptoms a child experiences and the severity of the disorder varying widely. 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.

Suzannah said:

“Max goes through so many difficulties and so many challenges, yet his bravery and lust for life shine through all the time.”

Max and Suzannah are supported by Lisa Smith, a Roald Dahl Children’s Nurse at Ashford and St. Peter’s Hospital in Surrey. Roald Dahl Children’s Nurses are located all around the UK in areas of greatest need and support seriously ill children and their families.

Suzannah added:

“It is hard to put into words really what Lisa does, and what Lisa is, to us. She is the foundation that holds so many things together for us.

“We have to communicate with between probably ten and 20 specialists each week, but with Lisa, she can co-ordinate all that care. Never has she ever let us down.

“She has taken us from a place where we were very isolated and struggling to get on top of his health, to a place where we know we are going to be okay.”

Suzannah is backing the Do Something Marvellous campaign – run by Roald Dahl’s  Marvellous Children’s Charity – to fund a new specialist Nurse in the NHS.

“Too many seriously ill children across the UK do not have access to a specialist Nurse, like Lisa. I want to help change this, because I know first-hand the life-changing impact they have and believe that every seriously ill child deserves a Roald Dahl Children’s Nurse”.

Dr Kate Irwin, a consultant at Ashford and St. Peter’s Hospital, said:

“Since Lisa has been with our service, I cannot express how much she has done for that little boy.

“I think there is a lack of understanding about how much extra work goes into caring for children with very complex needs. They need help accessing the right equipment, the right drugs and the right support. I cannot stress strongly enough how  much Roald Dahl Children’s Nurses bring to the care of children.”

Speaking about the care provided to Max and Suzannah, Lisa said: “Max is amazing. He is an absolute joy to be around.

“When I first met Suzannah and Max, it was apparent that if she continued to have the lack of rest that she was having, she was going to end up making herself ill.

“I can take some days more than 40 phone calls, and then I could have a call to say that I have got a new diagnosis on the children’s ward. It is a busy day, although there is never a day that I wake up and think that I do not want to go to work.

“I will always be there for them. I know Suzannah feels I am part of the family, and it is a real privilege to be part of their journey.”

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 coordinating 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:

“We are encouraging people and businesses to #DoSomethingMarvellous and help us fund a new specialist nurse in the NHS, just like Lisa.

“This will provide a vital lifeline to hundreds of seriously ill children and families, 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.


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