Specialists in Bristol co-create invaluable resource for Deep Brain Stimulation patients and their families
Bristol Royal Hospital for Children has been instrumental in the creation of a booklet which will support the families of young people across Europe who have undergone Deep Brain Stimulation (DBS).
DBS is a neurosurgical procedure which involves placing a medical device, called a neurostimulator, under the skin in the chest, which sends electrical impulses through implanted electrodes to specifically targeted areas in the brain.
Bristol Royal Hospital for Children is the regional centre for the South West for DBS, which is provided as a treatment for movement disorders like dystonia and epilepsy.
As DBS device settings are individualised to what works best for each patient, it’s important that this information is easily available and regularly updated, and that families have a copy of this so they can make other relevant parties aware, such as other caregiving providers or schools.
Boston Scientific, who created the DBS device, approached the clinical team at Bristol children’s hospital to work with them on a DBS Passport. This booklet will be used by all of the DBS centres across Europe, and can hold the details of the patient’s DBS settings and how these have been updated, as well as their medication and the contact details of their clinical team.
Rachel Smith, complex movement disorders physiotherapist at Bristol Royal Hospital for Children, said:
“The DBS Passport helps facilitate effective communication between children, their families and the clinical professionals within the DBS team.
“Anyone within the DBS team can fill out the Passport, and it can be used if your child needs emergency health services, or if you need to share this information with other organisations involved in your child’s care.
“Creating this booklet with Boston Scientific has been such a great opportunity for us to be able to help not only our own patients, but DBS patients all around Europe.”
Kim Hazelton-Chard, whose daughter Willow has a DBS device and is treated at Bristol Royal Hospital for Children, said:
“The DBS Passport will be great for us, as Willow has an extensive team of professionals caring for her at different hospitals, and this keeps them all up to date at a glance, at any appointment. This is really important, as we hope the DBS will improve Willow’s speech, feeding and movement.
“As DBS’ aren’t run-of-the-mill, the passport will enable us to share this information with Willow’s school, as it’s not something they’ve had experience with before.
“It’s also great to have the current, previous and future program settings in black and white, to know where we have progressed from and what we’re working towards, as it’s a lot for parents to remember.”
Anna Passmore, New Northern Cluster DBS Product Manager at Boston Scientific, said:
“We want to give confidence to our patients, families and carers and confidence comes with information.
“The DBS passport allows important information about their DBS device to be stored in one location which can easily be shared with other relevant organisations.
“We are really pleased that we were able to work closely with Bristol Royal Hospital for Children to create a DBS passport that can support both clinical professionals and their patients”