A leading children’s doctor has said 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 development 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”.
Chronic kidney disease is a life-long 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.
“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,” she explained.
“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.”
Dr Nagra has developed an international reputation for improving the transition of care for children to adult services through her Ready Steady Go programme, which supports young patients by helping them gain the skills, knowledge and confidence to manage their conditions.
She has also launched the pioneering 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.
“We have made great progress in Southampton for patients through Ready, Steady, Go and the PEEER project, which were both necessities given the fact double the number of kidney patients suffer mental health problems compared to the general population – and this is true for many other long-term conditions too, such as diabetes, heart disease and epilepsy,” said Dr Nagra (pictured right).
“However, 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.”
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.”
Dr Nagra is now working with parents and charities Kidney Care UK and the Wessex Kidney Patients’ Association to launch a family therapy service for three days a week - but warned it would not “negate the need for system change”.
“We are looking at different ways of working to be able to deliver high quality, sustainable care locally and nationally to meet the needs of patients and families,” she said.
“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.”
Banner image by Toimetaja tõlkebüroo via Unsplash
Posted on Wednesday 28 August 2019