App to help children in adrenal crisis earns award nomination
Sally Tollerfield has been shortlisted for the prestigious Nursing Standard Nurse Awards for designing and creating a free training app called My Cortisol, that helps parents give life-saving injections to children in adrenal crisis.
She will find out if she has won the Liverpool Victoria Innovations in your Specialty Award at the Savoy Hotel in London on May 1.
Sally Tollerfield, who is nominated for a Nursing Standard Nurse Award for her app 'My Cortisol'. Picture credit: Tim George
Adrenal crisis is a significant cause of morbidity and mortality for patients who are cortisol deficient. Around 700 patients at any time are being treated for cortisol deficiency for varying diagnoses at Great Ormond Street Hospital (GOSH) alone. There are many more across the country.
The life-saving injection has to be drawn up and administered using a needle and syringe, and Sally was concerned that this was a complex task for a distressed parent faced with their very sick child. ‘Because the injection is given in an emergency, it is only ever done in a stressful situation,’ she explains.
‘Previously we gave parents a leaflet and a quick training session on diagnosis, with updates when they requested them in the outpatients clinic.
‘However, sometimes we only see one parent in clinic. We are also aware that many other people look after the children who can't be in clinic for training, such as grandparents, childminders and family friends.'
Sally decided to develop a simple training video so that parents and carers can view the injection in real time, to either refresh themselves or guide them if needed.
Showing the process in real time was considered easiest for the parent or carer to follow. The video is silent so families can concentrate fully on the content. ‘In an emergency, there is a lot of panic and shouting,’ says Sally. ‘And it ensures the video can be used by everyone, no matter what language they speak.’
The video was embedded into the endocrine pages of the GOSH website and the response from parents in clinic has been overwhelmingly positive. However, it relied on a 3G signal being available, so Sally began to focus on developing an app.
The My Cortisol app can be downloaded for free. Sally could only use five tabs on the app, so she had to prioritise the essential information for parents and carers. The first tab is a real-time instruction video showing how to give an emergency intramuscular injection to a child using a glass vial of medication with a needle and syringe. There is a direct link at the end of the video that goes through to the emergency services number 999.
The second tab is a pictorial version of the instructions. The third tab gives instructions for the administration of glucose gel. The fourth has text boxes for parents to record medication doses and hospital contact numbers. The final tab has instructions for any receiving doctor, with details of the recommended treatment for these patients in an emergency situation.
The original filming was funded by donations to the endocrine department. When it was decided to develop an app, a £1,000 budget was agreed. Sally ensured the app was regularly reviewed by the endocrine team to ensure everyone was happy with the content.
The app was released in November 2014. Since then Sally has worked with GOSH’s clinical audit department to devise a simple satisfaction survey that parents and carers can fill out either online or on paper. Posters have been put up in the relevant clinical areas throughout the trust, and parents and carers are being shown the app in clinic and on the wards. It is also discussed during telephone contact and was presented to the parents’ support group. In addition, it has been presented at national paediatric endocrine consultant and endocrine nurse meetings.
Head of paediatric and adolescent endocrinology at GOSH and University College London Hospitals (UCLH) Professor Mehul Dattani says the app is a ‘fantastic innovation’. ‘It will benefit families of children with cortisol deficiency immeasurably,’ he says.
Once it had been developed for Apple, My Cortisol was presented to the GOSH directorate board, which agreed to fund it for android. This work has now been completed. Reviews from Google Play Store include: ‘Very useful. Good to keep up to date and reminded of what to do. Recommend’ and ‘Really helpful. This is great, no more carrying an A4 print out, this has all the information you need. Will be getting all the family to have it on their phones, clear simple instructions’.
Sally hopes the app will continue to support patients and their families after they leave the paediatric service. ‘It is already helping with adult transitions,’ she says. ‘We see our patients until they are about 13 and then they transfer to the adolescent services at UCLH – at about the same time as they start senior school, walking to school on their own and wanting more independence from their parents, which generally terrifies the parents. This app means that anyone who feels capable should be able to give the injection.’
Kirsty Burgoyne says the app has changed her life. ‘When I wake up at 3am worrying about whether I can remember what to do in an emergency, I can sit in bed and watch the video. It is about reassuring me when it is not an emergency as much as when it is. And when it is an emergency and you are under pressure and you can’t breathe, the app is there so I know I will do it right.’
Kirsty is sure it will make a difference to all parents who, like her, panic about whether they will be able to give the injection. ‘I might have been able to give the injection without the app, but it means there is someone holding my hand – and available 24/7,’ she says. ‘And that makes all the difference.’