Respiratory experts at the Great North Children’s Hospital (GNCH) in Newcastle have launched a new website to help improve asthma care for children and young people in the North East.
The Beat Asthma website will provide information and education to help families, schools and health professionals to work together to ensure children and young people living with asthma receive the best care and support.
Almost 5.4 million people have been diagnosed with asthma in the UK, making it the nation’s most common lung disease.
Dr Jen Townshend, consultant paediatric respiratory physician at GNCH led the project to create the new website, she said: “Asthma rates in the North East are amongst some of the highest in the UK and there are a significant number of children with asthma whose family have little understanding of the disease and the risk it poses.
“People do still die from asthma so it is essential that children, young people and their families, as well as the healthcare professionals involved in their care are able to access clear information to educate and empower them to manage asthma.”
Dr Townshend worked alongside consultant paediatric respiratory physician Samantha Moss, Sally-Anne Hails, children’s respiratory nurse specialist and other childhood healthcare colleagues from across the region to develop the new website. The team also consulted with patients and their families to create a website with all the information they would need.
As well as providing advice on diagnosis, management and referral criteria for healthcare professionals, sections of the Beat Asthma website have been designed specifically for families, children and young people. Dr Townshend said: “Children, young people and their families will have access to the information and support needed to manage asthma. There is information on how to recognise when asthma is less well managed, easy to follow flow charts about how to manage an asthma attack, as well as seasonal messages such as prompts to get the flu jab and reminders about arranging asthma reviews.
“There is also an asthma advocacy tool kit to help support children with asthma when they are at school and those with housing concerns.”
Funded by the Great North Children’s Hospital Foundation, the development of the website follows the publication of the National Review of Asthma Deaths in May 2014. The report, published by the Royal College of Physicians highlighted a number of areas where improvements to asthma care were required.
The report showed that an avoidable lack of education was a potential factor in 94% of the children and young people who died from asthma in 2012. Reversing this lack of education is one of the key aims of Beat Asthma, Dr Townshend explains: “Effective self-management has been shown to improve outcomes of care, but we can only do this if everyone involved in providing care and supporting those with asthma has the right knowledge and support. Beat Asthma has been created to address this.”
Olivia Ramshaw, from Chapel House in Newcastle was six years old when she was diagnosed with mild asthma, mum Michelle explains: “Olivia was diagnosed with mild asthma about two years ago and while she regularly used her blue inhaler she never used the brown one as she didn’t like the taste.”
Now eight years old, Olivia had very little trouble with her asthma, until May 2017 when she developed a cough. Michelle said: “Olivia developed a cough and while she wasn’t poorly, she wasn’t quite herself. One evening the cough became relentless and Olivia asked to stay off school the next day as she wasn’t feeling well.”
Michelle took Olivia to their GP who referred them to the emergency assessment suite at the Royal Victoria Infirmary to be checked. Michelle continues: “We hadn’t realised that the cough was a sign that Olivia’s asthma was deteriorating and she became very poorly, very quickly. Olivia was admitted to The Great North Children’s Hospital while the doctors tried to get her infection under control. It was a really worrying time especially when we were told that we might lose her.”
Following her three day stay in hospital Olivia is back to her usual, happy self. Michelle said: “Olivia loves to be busy, she goes to Brownies, taekwondo and swimming lessons and while I think now we’re a little more careful, her asthma certainly doesn’t hold her back.”
Michelle believes Beat Asthma will be an important tool for families of children with asthma. She continues: “I think the website is a brilliant idea, especially as all of the information you need will be in one place. It’ll be especially helpful for families like us who weren’t sure which symptoms to watch for that might mean Olivia’s asthma is deteriorating or who think that mild asthma is nothing to worry about.
“We’re really lucky as Olivia’s asthma is now under control and it’s now just a case of trying to manage it and help her live with it. We’ll be able to recognise the signs of deterioration now but having Beat Asthma there as a point of reference is going to be a huge help.”
Samantha Berry from Consett in County Durham was diagnosed with asthma after being admitted to hospital with bronchiolitis as a baby. Her mum Linda said: “Samantha was really poorly with bronchiolitis when she was a baby. There is a history of asthma in our family and she was diagnosed with when she was only three months old. Samantha had frequent visits to hospital when she was younger and we were referred to the asthma team at the Great North Children’s Hospital when she was eight.
Samantha, now 18, has recently made the transition to the adult asthma service at the Royal Victoria Infirmary and has worked closely with Dr Townshend and the team during the development of Beat Asthma, acting as one of the editors of the website.
One of the key areas of the Beat Asthma website provides information and advice to schools that are looking after children with asthma, something that is important to Linda and Samantha. Linda explains: “Sam has always had a good understanding of how to manage her asthma but when she was 15 she had a severe asthma attack at school. The staff were brilliant but they didn’t have the experience to deal with an asthma attack of this scale.”
The severity of the asthma attack meant that Sam had two weeks off school but before she returned her asthma nurse visited the school to offer guidance and practical advice about what to do should Samantha have an attack like that again. Linda continues: “Unfortunately Sam did have a second attack at school but this time they knew what to do and how keep her calm and this is one of the reasons why I’m so pleased to see the development of Beat Asthma.
“The website is brilliant; I only wish there had been something like this around when Samantha was initially diagnosed. Leaflets are great but once you’re given them they tend to go in a drawer and aren’t looked at again. With the website you can access the information you need right away and wherever you are.”
Samantha is full of praise for the team who looked after her at the Great North Children’s Hospital, she said: “I’ve been under the care of the asthma team for 11 years and have developed strong bonds with the doctors and nurses who are just exceptional. They always made sure that I understand what each of my medications does and what it actually means to have asthma.” Mum Linda continues: “The whole team have been brilliant, they have taken such good care of Sam and we’re so thankful to them for everything.”
Samantha is now studying for her A-levels at Consett Academy and hopes to go to university to train to be a nurse, she said: “I have had such amazing care from the doctors and nurses who have looked after me, by training to be a nurse, I hope I can give a little something back and care for people the way I have always been looked after.”