How I use MyGOSH: A parent perspective

Lorraine Hodsdon is the Head of Nursing for Research and Innovation at Great Ormond Street Hospital and mum to Astrid, who is a current GOSH patient. Lorraine shares with us how she has found using MyGOSH; a tool developed by the Trust to help young people and families manage their health and care online.

Lorraine's daughter Astrid, aged two and a half, has viral wheeze and premature lungs. Lorraine shares the first symptoms they recognised and how Astrid came to be a patient at GOSH: “Astrid was a premature baby and came 10 weeks early. For her first year of life she was fine but once she started nursery, we noticed she kept getting coughs, colds and getting wheezy. Within the space of a month she’d had three admissions to our local hospital with a viral wheeze.

“A year ago she then went back to our local hospital and was found to have RSV (respiratory syncytial virus) and bronchiolitis and was really quite unwell. She was there for a week before she got transferred to a paediatric intensive care (PICU) bed at GOSH. She was a patient here for 5 days and then discharged back to our local hospital.

“We were put into the respiratory services at GOSH so she has 4-6 monthly follow-ups for her respiratory care.”

Great Ormond Street Hospital launched MyGOSH in March 2019, a safe and secure online portal that enables children, young people and families to have access to specific parts of the electronic patient record at GOSH. Lorraine was keen to use it when it first came out: “We signed up in April. It’s great because it means we can access all of Astrid’s patient letters with us wherever we go. It’s really good from a family point of view - her dad is a stay-at-home dad so if he has to go to the GP or hospital alone he has all of her information and doesn’t just have to rely on me!

“We’ve also been able to share the info with her local respiratory consultant, which can you do via sharing a link as well as simply showing the app in person.

“It just makes things loads easier and makes me not worry so much – when going to the GP or hospital I know we have all of Astrid's information in one place.”

Explaining what features she find useful in the app, Lorrraine shares: “It’s great having a central port for all the patient information to be in. Even if you don’t have the app you can log onto a computer to access the online portal to pull up the information.

“I haven’t used the messaging feature yet but I like knowing there is this capability. Our research teams have a central email address and its useful that if you wanted to, you could write to them via the message centre in the app.

“MyGOSH gives you the opportunity to hold all the patient information, follow up with results, and have letters and appointments all in one central place. And you’re not going to lose them. As a parent knowing all the information doesn’t have to sit in my head is very reassuring!”

As the Head of Nursing for Research and Innovation at GOSH, Lorraine also gets to see the staff benefits of MyGOSH: “In January we will be looking at how to roll out MyGOSH in the Clinical Research Facility and encouraging families to sign up for their research care as well as their clinical care. Having all the information in a central patient record is really useful and I’d like our families to be able to communicate with our nurses via the app.

“At GOSH we have many patients that come through via five or 6 different specialities so to have all those clinical appointments, letters and investigations in one place is really handy. Families no longer need to come along with big binders of all their letters."

Find out more about MyGOSH and how you can access it