Families across Essex and Suffolk have helped to show where changes could be made to improve asthma care for children and young people in our latest report. The research by Healthwatch Suffolk and Healthwatch Essex was funded by the NHS in Suffolk and north east Essex to support better planning of asthma care, now and in the future.
Key findings and learning
More than 140 people shared their experiences in a local survey, interviews, and as a part of engagement within local hospitals.
• People had an inconsistent experience of getting a diagnosis, and some people had found it very difficult.
• More than a third of parents said they either did not have an asthma plan in place for their child or were ‘Unsure’.
• Only half of respondents felt children and young people’s asthma was monitored regularly enough.
• Parents, carers, guardians, children and young people were generally ‘somewhat confident’ about managing asthma attacks, indicating that confidence could be improved with more information, help and support.
• Just over a third of parents, carers and guardians had not had a follow-up review of their child’s asthma after being admitted to hospital.
Whilst areas of improvement were noted, it was also clear that many had received excellent care and support. One respondent said:
“I have a good relationship with the asthma nurse at the GP surgery and I feel really listened to and engaged with. All asthma reviews take place over the phone, which works well with school and work, and I appreciate these more.”
The importance of having an asthma plan
An asthma action plan supports patients to take the right actions at the right time and lowers the risk of a potentially fatal asthma attack. In fact, it is known that people with a written asthma plan in place are four times less likely to have to go to hospital for their asthma.
Yet, our findings indicate that almost two out of every five (39%) children and parents were unsure or did not have an asthma action plan in place.
One parent, carer or guardian reflected this in their feedback:
“We’d have loved to have had that asthma action plan a little bit earlier in his life, because that’s the important thing. I think as a parent, and as a child, to start to understand what good looks like… and when you go away from good, what do you need to do and when.”
Wendy Herber (Independent Chair, Healthwatch Suffolk) said:
“Our findings show why having an asthma plan in place is so important for every child or young person, and we would like to see systems and services promoting them much more. The conversation about having an asthma plan should start at the point of diagnosis, with patients and families fully informed about why having a plan in place is so important – ultimately, to keep children and young people out of hospital.
“For them to be most effective, the plans must be portable and updated by people responsible for the care of children and young people at school, in hospitals, and in primary care (e.g., by GPs and asthma nurses). Continuous review of the child or young person’s plan across each of these settings can only lead to better local care and reduced admissions to our hospitals.”
The report includes other key areas of learning, including improvements that could be made to increase people’s confidence around managing asthma attacks, and to support better awareness of how professionals and families can work toward easier diagnosis.
One parent, carer or guardian said:
“Everything [my child] knows about asthma has come from me. I feel lucky to be in the position I can teach her this stuff because no one else has offered to do that.”
“The feedback we received is both important and insightful. It shows how experiences are not currently consistent across Suffolk and north east Essex, but how that could be changed to ensure every child receives the help they need. We hope our local NHS leaders and services will take the time to reflect on what people have told us and use the feedback to make improvements to care and support for all children and young people with asthma.”
Sam Glover (CEO, Healthwatch Essex) said:
“We would like to thank everyone in north east Essex who took part in the survey and interviews, helping improve asthma care for children and young people.
“It is great to see that young people’s experiences in hospital were mostly positive but follow up GP appointments need to be scheduled more consistently for ongoing support. Families expressed they would benefit from more guidance in their asthma plans about potential asthma triggers and when to go to hospital if their child has an asthma attack, so that young people feel more confident in managing their asthma.
“Getting a diagnosis was difficult for most families in our area for many reasons so this should be an area of focus going forward. Appointments should be offered outside of school and work hours to improve access to monitoring and support. We are pleased local NHS leaders and hospital consultants are already exploring how these findings can improve asthma care for children and young people across the East of England.”
How the reports will be used
The reports have been shared with the NHS in Suffolk and North East Essex. They will also be shared with leaders responsible for children and young people’s asthma planning in the east of England. Our hope is that NHS leaders will use people’s experiences to drive improvements and local change in how asthma care is provided to children, young people, and families.
Responding to the report, Garry Joyce (Deputy Director of Transformation: Children & Young People, NHS Suffolk and North East Essex Integrated Care Board) said:
“We know that asthma can have a detrimental impact on the quality of life of those who live with the condition and it is important we do all we can to support and empower them to best manage their condition.
“We greatly appreciate the input given by all the children and young people and their families and carers. This report provides valuable insight and will help us and our partners further develop the right support services so young people living with asthma can live happy and healthy lives.”
Find local and national help and support
For more information about asthma for children, young people and families, please visit Healthwatch Suffolk’s dedicated web page about support. It features posters that can help children to learn about managing their inhalers as well as useful links to organisations, services, apps and more.
To read the report, click here.