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Why is there still an unacceptable level of delay in diagnosing childhood brain tumours?

In Childhood Cancer Awareness Month, Clinical Negligence solicitor Fiona Huddleston discusses delay in diagnosis of brain tumours in children

Brain scan
Fiona is an associate solicitor in the clinical negligence department.  You can follow her on twitter as @FEHuddleston
Diagnosing a brain tumour in a child is not as straightforward as one might think. This is because they are relatively rare and have a very varied presentation. There is of course the added difficulty that young children in particular are unable to communicate effectively to describe the symptoms they are experiencing.

In 2007 Children’s Brain Tumour Research Centre produced a guideline advising healthcare professionals on the identification, assessment and investigation of children presenting with symptoms and signs that could be caused by a brain tumour, as a result of concerns raised by parents that health professionals were failing to recognise and act upon their child’s symptoms. The following year this guideline was endorsed by the Royal College of Paediatrics and Child Health (RCPCH) and in 2011 it received NICE NHS Evidence accreditation. 

Following the development of the guideline HeadSmart launched a campaign to spread awareness of the symptoms of child brain tumours amongst both parents and health professionals.

Initial statistics showed that the launch had been a success with the interval between onset of symptoms and diagnosis reducing from 9.3 weeks to 7.5 weeks however there remained a lot of work to be done. A survey carried out by HeadSmart in November 2011 (post launch of their campaign) produced alarming statistics with only 55% of paediatricians and 8% of GPs confirming that they would be confident in their ability to recognise when a child might have a brain tumour.

HeadSmart have worked tirelessly trying to educate health professionals, with their efforts including the development of an online education module for health professionals. However as a charity they can only do so much. In order to bring about a real change greater engagement is required from medical practitioners.

In 2014 a joint report was published by the RCPCH and the National Children’s Bureau which recommended that Health Education England and relevant professional associations ensure all frontline health professionals involved in the acute assessment of children and young people utilise resources such as the ‘Spotting the sick child’ web resource and complete relevant professional development so they are confident and competent to recognise a sick child.

My own impression from case work and also from speaking to health professionals is that the existence of the resources such as “Spotting the Sick child” or HeadSmart online tools remain unknown to many primary care providers, as does the existence of the RCPCH guideline.

I recently represented a family at the inquest into the death of their two year old daughter; sadly neither her paediatrician nor ENT doctor recognised the symptoms of brain tumour. It also emerged that neither doctor had previously had sight of or even heard of the RCPCH guideline. If they had considered the guideline, or even the quick reference guide, they would have been aware that a brain tumour should have been considered.  Unfortunately occurrences such as this are common place.

More often than not GPs act as the gatekeepers to treatment and so the importance of their role cannot be underestimated.  GPs (and other health professionals) are in a very fortunate position today to have access to excellent resources at their fingertips. However there needs to be a willingness to embrace technological advances in addition to a shift away from the paternalistic "doctor knows best” attitude to a more autonomous approach, taking heed of parents’ “sixth sense”. Moreover, as a minimum, all health professionals dealing with children should be aware of the guideline prepared by the RCPCH.

Brain Tumour Awareness Infographic


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