Young kidney patients 'let down' by a lack of mental health support
By Ben Mitchell, PA
A leading children's doctor has said young patients across the UK with kidney disease and their families are being "let down" by a lack of mental health support and therapy.
Dr Arvind Nagra, a consultant paediatric nephrologist at Southampton Children's Hospital, said current provision was "not fit for purpose" and the creation of a national standard was "imperative".
She is now working with parents and charities to secure funding for a family therapist to be based within the service in a role she hopes to see introduced nationwide and formally "as a matter of urgency".
Dr Nagra said: "While so much focus is required on the medical aspects of this - or any long-term health condition - there is a much wider impact that can be overlooked and that is the case with mental health support and family therapy.
"At a time when mental health is so high on the agenda nationally and within the NHS, current provision across the country for this particularly vulnerable group is not good enough.
"We simply cannot continue with a situation where this support is patchy and not fit for purpose when the consequences can affect the lives of all members of a family."
Judy May, whose three-year-old son Asher has undergone a kidney transplant, said: "The chronic kidney disease journey is a hard one as it cannot be cured and it is so unpredictable and siblings and parents live every moment of that.
"This is the situation for many families caring for children with long-term conditions and I believe the availability of counselling and therapy to support families would transform how people cope and help to ease the strain."
Chronic kidney disease is a lifelong condition in which the kidneys can gradually stop working over a period of months or years.
A significant number of patients with the condition are either on dialysis or have had a kidney transplant.
Dr Nagra has launched a Ready Steady Go programme to help the transition of children to adult care and has also created the Patient Empowerment, Self-Esteem, Employability and Resilience (PEEER) project which has received more than £100,000 of National Lottery funding to improve the mental well-being and confidence of young people with a long-term condition.
She said: "For those with life-long conditions we must do more to find a way of standardising how we help to care for the needs of the whole family - siblings and parents alike - and consider the pressures on them too."
Dr Nagra is now working with parents and charities Kidney Care UK and the Wessex Kidney Patients' Association to launch a family therapy service.
She added: "This is an important step as we work towards introducing and evaluating the impact of this work and I hope it will act as a driver for change nationwide so families receive the support they need when experiencing difficult and challenging times."