UK first of its kind paediatric bladder service launched at Evelina London

Evelina London Children's Hospital has launched the UK's first paediatric bladder neuromodulation service.

The service will offer specialist procedures for children and young people with rare bladder conditions, who haven't responded to standard treatment.

Bladder neuromodulation, otherwise known as sacral nerve stimulation, is a treatment where the patient has an electrical stimulator device, similar to a pacemaker, surgically implanted into their lower back.

Electrode wires run from the device to connect to the nerves from the base of the spine. Once the device is switched on, it sends electrical impulses through the wire to the nerves, to change the nerve messages going to the bladder. These changes prevent incorrect or unwanted nerve messages in the bladder which cause urinary incontinence or a young person not being able to empty their bladder without a catheter.

Thanks to funding from Evelina London Children's Charity, this is the first time in the UK a bladder neuromodulation service has been set up for children and young people.

Jenny Allan, 17, from East Kent, was the first teenager to undergo the procedure in the new service at the specialist children's hospital.

Jenny has a condition similar to Fowler's syndrome, a rare condition that typically causes urinary retention in young women. She's unable to pass urine without self-catheterising, and has been under the care of Evelina London for the past 8 years.

Arash Taghizadeh, consultant paediatric urologist and lead for the bladder neuromodulation service at Evelina London, said: "Bladder problems in children are common, and the majority can be simply and effectively treated to improve symptoms. However, there is a small minority of children and young people who do not respond to standard treatments. They may be left with either distressing urinary incontinence or they may not be able to able to empty their bladder without passing a tube (catheter) into the bladder.

Bladder neuromodulation is a specialist procedure that has been available to adults for more than 20 years.

 

It's great that we're able to offer it to children and young people to improve their symptoms, giving them greater independence over their daily lives.

Jenny said: "I'm a very outdoorsy person and will be studying ecology at university in September, and hope to get a job in that field. If I'm lucky I could end up trekking through a rainforest or counting penguins in the Antarctic! This operation has meant that I won't need to self-catheterise 6 times a day. Doing so is quite difficult even on a day hike in the Kent Downs where there aren't toilet facilities every few hours, let alone in the middle of a rainforest or up a mountain!

The operation has allowed me to have a whole new freedom and be able to do what I want in my life.

"It's quite cool to be the first person to have this procedure in the new service at Evelina London. I'm loving my new-found freedom of not being reliant on carrying catheters with me all day."

Evelina London is the largest centre in the UK performing standard and complex bladder investigations, known as urodynamics.

The specialist children's hospital also has wider expertise in using nerve stimulator devices in children, including running the oldest and largest paediatric deep brain stimulation service in the world.

Barbara Kasumu, Executive Director of Evelina London Children's Charity, said: "At Evelina London Children's Charity we are committed to supporting the hospital to provide the latest innovative models of care. We are so proud to have funded the new bladder neuromodulation service which for the first time in the UK will help offer children and young people, like Jenny, a new sense of freedom."