Learning from an asthma death in Waltham Forest

By Korkor Ceasar, North East London Clinical Commissioning Group


We all need to be vigilant around any child with asthma. The designated nurse for safeguarding children in Waltham Forest, Korkor Ceasar, tells us about lessons learned after a well-loved boy in Waltham Forest sadly died, and how we need to ask about asthma to avoid another tragedy.

Let’s not allow this to happen again. Let’s all raise our game and make sure everyone in contact with a child with asthma – and the child or young person themselves – know how to keep them/themselves safe.

The pseudonym Khalsa was chosen by his father, in recognition of his cultural heritage, his identity and strong commitment to his Sikh faith.

In Khalsa’s case, the serious impact of his asthma was missed. He often presented as ‘well’ to professionals involved, this could have been because of him not wanting to make a fuss. His mother had died when he was seven years old, and his father tried to do the best for him and his siblings.

The family were understandably devastated and faced a huge transition in their lives, and many medical appointments were cancelled or rescheduled.

However, there had been two significant incidents where emergency medical services were called because Khalsa was struggling to breathe in the lead up to his death. It should have been possible to connect the dots for anyone looking out for him. Sadly, at the third time even though they tried very hard, the emergency services were not able to save him.

So how could the dots have been connected? That has been the subject of a Child Safeguarding Practice Review for the health and care system in Waltham Forest. We set out to learn the lessons, understand and challenge ourselves to improve pathways and services to make children safer and prevent something like this happening again.

Reviews are not about apportioning blame, but about improving practice for the future. Khalsa’s review was published in January 2021, accompanied by a Khalsa CSPR 7 minute briefing to promote system learning. The main findings of the review included:

  • There were challenges with systems communication between multiple NHS professionals/teams working with the family, which meant that the right people did not always have the right information at the right time
  • The need to create systems that enable young people to have a voice, to influence and participate in their own health plans
  • The false perception of asthma as not being potentially life threatening which could potentially impact on how some professionals engage in professional curiosity, specifically in the context of safeguarding.

There was recognition that some practitioners do not understand the safeguarding pathways within their own agencies, including but not exclusively, in health. So a series of events were held locally to promote learning about asthma. Child and family friendly messages about the correct use of inhalers were tweeted on world asthma day to promote awareness, and a week of asthma awareness sessions were held at Khalsa’s local hospital.

This case highlighted the importance of culturally competent practice. This practice places children’s well-being and protection within their cultural context. Absence of cultural competence and cultural humility can lead to inaccurate assessments and decision making.  Evidence from practice reviews nation ally suggests that the impact of culture on parenting is not always overtly considered or evidenced.

So how are we improving matters in Waltham Forest?  We agreed to develop this blog as part of the information to be used in the #AskAboutAsthma campaign in September 2021, and to signal that a group of Youth Champions who are 14-16 years old in Waltham Forest will be developing a video about asthma in October 2021.

The video will look at inhaler types – relievers & preventers, technique and the use of spacer devices. It will also look at over use of inhalers, pollution – which is a local issue – and ties in with the Asthma Friendly Schools initiative and triggers, to support and empower young people and their families.

The videos will be short and impactful. They will be shared with all secondary schools in Waltham Forest, and services for 0-19 year olds, presented by the Youth Champions at the North East London Babies, Children and young People forum and also included in the national NHSEI Asthma Toolkit.

Please look out for the video, share widely and have discussions. Meanwhile if you are or know a child or young person with this often misunderstood condition, please Ask About Asthma – it could make the difference to a child’s life.


See more from #AskAboutAsthma 2021