The paediatric nephrology department at Southampton Children’s Hospital has appointed its first youth worker for patients with chronic kidney disease.
Andy Beeson will work alongside Dr Arvind Nagra, consultant paediatric nephrologist, to develop new and innovative ways of supporting young patients aged 11 to 18 with long-term health conditions as they transition from children’s to adult services.
This initiative has been made possible through funding from Kidney Care UK and the Wessex Kidney Patients’ Association, who have been working in partnership with University Hospital Southampton NHS Foundation Trust to develop the role.
Chronic kidney disease describes the gradual loss of kidney function over a period of months or years. Most patients with the condition are either on dialysis on have had a kidney transplant.
“As well as the medical impact this – or any other long-term health condition – can have on our young patients, there is a wider social impact that also needs to be addressed,” said Dr Nagra.
“Care doesn’t just stop at providing the correct medical treatment. We know through a number of recent research studies the importance of employing a youth worker specifically to support this group of people with the challenges they face.
“Difficulties can include falling behind with education, struggling to find and retain employment and problems with developing and maintaining relationships with potential partners and friends. Studies also show that these patients often have a feeling of isolation, poor self-image, depression and anger.
She added: “Some have difficulty maintaining diet and fluid restriction and trying to co-ordinate taking various medications at different times, resulting in poor compliance and poorer outcomes.”
The new role will form part of the trust’s pioneering Ready Steady Go programme – developed by Dr Nagra – which aims to support young patients as they transition from children’s to adult services by helping them gain the skills, knowledge and confidence to manage their condition.
“I’m absolutely delighted to be working with Dr Nagra and her team in this new and vital role,” said Andy. “I have 12 years of experience as a youth worker and know the importance of supporting young and vulnerable people with information, advice and guidance both in groups and on a one-to-one basis.
“I have been in this role for three months now and we have already seen the incredible benefits this kind of enhanced care has on our young patients. It helps them to feel empowered and, by developing a good relationship and trust, I can also act as their advocate when they feel they need a little more support with wider issues.”
Suzan Yianni, hospital grants manager at Kidney Care UK, said: “Being a teenager is hard at the best of times, facing changes to education, possibly finding a job for the first time and forming new relationships.
"To throw chronic kidney disease, dialysis or transplantation into the mix means this is a really vulnerable group of people and we’re delighted to be able to help them by working in partnership with the Wessex Kidney Patients’ Association to co-fund Andy in this new role.”
Richard Lee, of the Wessex Kidney Patients’ Association, added: "To us this is a vital project and we look forward to seeing it flourish and the positive impact it will have on young kidney patients."
Posted on Monday 9 July 2018