New health passport gives children a voice

My Health Passport is a new way for children and young people with learning disabilities or complex health needs to share important information about themselves when accessing care in Hywel Dda University Health Board.

Developed by Donna Richards, Wellchild Nurse, Janet Millward, Senior Paediatrics Manager, and kindly produced by WidgitHealth, My Health Passport is a simple but important document that will empower children and young people and their families to communicate their needs, wishes and values to those caring for them.

Using Widgit symbols, the passport contains three sections; things you must know about me; things important to me; and my likes and dislikes.

George Owen from Llandysul is four years old and suffers from a very rare gene mutation which causes medication resistant epilepsy. Along with other problems, as a result of the seizures, George also suffers from temporary paralysis.

George, mum Kirsty and dad Stephen are one of the first families to receive the new health passport. It is theirs to keep and show hospital staff when they meet George.

Kirsty, said: “George’s condition is rare and this passport will help staff understand his condition and treatment but most importantly it will let them learn more about George and what is important to him.”

Lilly Kendall from Llanelli is 12 years old and has lived with complex heart and lung conditions since she was 10 days old, resulting in a heart and lung transplant last year.

During the course of her young life, Lilly has needed care and treatment at many different hospitals including Glangwili Hospital, Bristol Children’s Hospital and Great Ormond Street Hospital.

Lilly has been presented with one of the first copies of the health passport to keep with her whenever she visits hospital.

Lilly, said: “This will help everyone know a bit more about me and know what I’ve been through as I am pretty unique. This passport will help me have my voice in hospital and be 100% involved in decisions that involve me, because I know so much about my condition and I’m happy to talk about it.

“I want people to know that I’ve got a story to tell and I’m always happy to share it.

“I hope that when I am admitted to Great Ormond Street, Glangwili and University Hospital of Wales that everyone knows that I literally like to know everything.”

Cai Griffiths from Glanamman is eleven years old and lives with Spinal Muscular Atrophy (SMA), a genetic disorder that results in the loss of motor neurons and progressive muscle wasting.

Cai, said: “I enjoyed filling in this passport and I think that the benefits are doctors, nurses and play staff understand me and my needs.

“This passport will help me have my voice in hospital and not have decisions made for me.

“I hope that on future admissions to hospitals that the team know that I like to know what’s going on and want to be prepared for procedures.”

Janet Millward, Senior Paediatrics Manager, said: “We are thrilled to be able to provide children and young people accessing our services with their very own passport, something driven forward by our learning disability champions. 

“Letting our staff know their wishes, values and daily routines will help us do what we can to meet their needs which we hope will make a significant and positive impact on their time in hospital.

“Anybody who feels their child may benefit from having a passport of their own can download it free of charge from WidgitHealth’s website.”

Whilst My Health Passport is designed with hospital services in mind, it can also be shared with other support used by the child or young person, such as schools and community support.

Maria Battle, Chair of Hywel Dda UHB, said: “Children and young people with learning disabilities and complex health needs often visit hospital for planned and emergency reasons, meeting many different staff in many different services.

“Sharing the passport when visiting hospital will help our doctors, nurses and other healthcare professionals know what they need to do to make the visit as comfortable as possible.

“I’d like to thank Donna and Janet for their work to get this invaluable resource in place and to WidgitHealth for their generosity and support throughout its production.”

My Health Passport is available as a free download in English and Welsh from https://widgit-health.com/downloads/my-health-passport.htm