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New NHS Guidance for listening to parents of sick children


    Lucy Norton considers the new framework for managing the care of sick children at risk of deterioration, and the importance of doctors working with parents and responding to their concerns.

    By Lucy Norton

At last there is new NHS guidance (Safe system framework for children at risk of deterioration) which highlights the importance of listening to parental concerns of sick children which has been published by NHS Improvement, together with the Royal College of Paediatrics and Child Health. I made reference to the fact that this was something that the medical profession needed to address in my earlier blog.

My child is ill and getting worse, why is no-one listening?

Whilst children can bounce back quickly from illness, they also have the contrary problem in that they can deteriorate very quickly and die if they do not get the right treatment fast. Illnesses that are widely publicised that require urgent treatment include Meningitis and Strep A which can lead to septicaemia (blood poisoning) and death in babies and children if they do not rapidly get antibiotics or the appropriate treatment they require.  According to NHS Improvement, research shows that more than a quarter of preventable deaths in children and adults happen because they are not properly monitored so a change in their condition is not noticed.

The people who do notice though are the parents of these children and babies. It is very difficult to continue to say “My child is ill… is getting worse… has new symptoms” if no-one accepts that the parent can see an objective deterioration.

Information obtained from parents

It is therefore good to see that NHS Improvement prepared their recent report with the input from parents who have very sadly lost a child. They can then understand the difficulties parents need to overcome to be heard on behalf of their children.  One mother set up a support group called Mothers’ Instinct following the death of her 21-month-old daughter and she participated in the preparation of the report.  She is reported in the news as saying that parents who joined the support group all had in common the feeling of “knowing something was very wrong and not feeling their concerns were properly responded to”.  It was the view that there was an over-reliance on the results of tests and the monitoring of vital signs such as temperature and blood pressure which were then being misinterpreted as being reassuring.

Whilst observations and test results have their place, so do parental concerns and these need to be taken into account. Not only that, NHS Improvement goes further by saying that parents’ concerns should carry more weight than these results.  The guidance sets out a safety framework for caring for sick children which includes “developing a culture which is committed to overall improvement in patient safety, prioritising safety, leadership and executive accountability, and monitoring and measuring patient safety”.

My experience

During my career as a medical negligence solicitor it is invariably the cases involving the avoidable death of a child that stay with me. It became even more poignant when I became a mother myself and I have certainly been on the end of the “you look like an over-anxious/first time/over-tired* mum” (*delete as appropriate) look from a doctor or nurse.  This makes you feel like a bad mum even when you are doing your best and you know your child is not right.  However, even saying “my son/daughter is just not right” after detailing their symptoms means something.  “Not right” therefore must mean that something is wrong, not normal for the child, is making them unwell and should be listened to.

Provided medical professionals take on board the guidance from NHS Improvement, I can only see this being a good and much needed approach to diagnosing and treating children and babies.

This can be seen in these two contrasting cases that I have acted in over the last few years:

  • The first case was approximately 7 years ago where a 16 month old child died after deteriorating over hours in an A&E waiting room, with Mum repeatedly saying she was getting worse.  The child had sepsis as a result of a Strep A infection.  The hospital admitted liability and changed their procedures for triaging children.  The fact Mum was not listened to featured in their investigation report.
  • The second case I recently investigated related to a 2 year old where in contrast, I was heartened to read in the medical records that whilst objectively some tests were normal, it was actually recorded “but we need to take parental concerns seriously if seems weaker than yesterday”.  Therefore further monitoring and tests were carried out which revealed meningitis and the child was treated and survived.

There obviously needs to be a balance between a medic’s expertise and the inherent knowledge of a parent as to their child’s health and hopefully this will be embraced by the medical profession following this new guidance.

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