As a paediatrician I have had the privilege of looking after many children and young people with a range of different conditions. As well as talking to them about their conditions, as doctors we use a variety of different medications - always intending to do more good than harm.
I was particularly struck by the case of one young boy* who had been prescribed an EpiPen for his anaphylactic reactions. Unfortunately, nobody had really shown his mother how to use it properly. When the lad had an allergic reaction, his terrified mother tried to use the EpiPen whilst her frightened son kicked and screamed. At the crucial moment of firing, he moved and the adrenaline pen acted like a Stanley knife, slashing his thigh. I suspect little of the adrenaline would have gone into him. Both parties were traumatised by the event. He carries the physical and mental scars; his mother, the guilt of causing them both.
This case is one of those that has driven me to try and encourage medicines safety throughout my career. I emphasise to trainees and families about the appropriate use of medications; the avoidance of excessive prescribing; the importance of training families in how to use them; and the recognition of their potential side-effects.
It has driven me to explore safer ways to give adrenaline pens with families. Over the last 10 years I have been actively involved with Medicines for Children. This is a patient information website, jointly administered by the RCPCH, the Neonatal and Paediatric Pharmacists Group (NPPG) and WellChild, which aims to provide reliable, high quality information for parents and carers on how to give medicines. This includes how to use adrenaline pens safely and reliably. I have also been part of the British National Formulary for children, striving to provide high quality information for doctors.
This summer Medicines for Children celebrated its 15th anniversary, after having been conceived in 2006 following a survey of 600 parents which identified the need for a national and accessible resource on paediatric medicines. Today the website hosts free paediatric-specific information on 220 medicines. While we were in no doubt about the need to develop tailored information regarding medicine use in children, we could not have imagined the success of our website and its global reach. Since its inception, over 16 million unique users have accessed the resources on our website.
We now not only cover all of these medicines, but also more specialist, off-licence medicines, for which parents previously reported difficulty in finding information on
I joined the project board in 2011, by which point the team had already launched the first iteration of www.medicinesforchildren.org.uk. At that time, it included information leaflets on 50 of the most commonly prescribed paediatric medicines, covering a range of medical conditions. Over the last ten years of my being involved with the project, I have seen the work come on in leaps and bounds. We originally aimed to develop medicines information leaflets on the top 100 most prescribed and over-the-counter medicines in the UK.
We now not only cover all of these medicines, but also more specialist, off-licence medicines, about which parents previously reported difficulty in finding information. Specialist medicine leaflets, that may not reach the top 10 (or even the top 100) of our most downloaded information, are nevertheless particularly valuable to families that lack access to appropriate sources of information.
The aim in producing information for Medicines for Children is to provide reliable, straightforward, common-sense advice about the use of medicines in children, for parents and carers, in appropriate language for a reading age of 11 to 12 years.
These are the people who administer medicines to children often on a daily basis; their insight into the challenges they face has heavily influenced our work and will continue to do so
The voice of parents has been particularly valuable during development of Medicines for Children, and we are grateful to the parent groups in our charity partner, WellChild, for their input. These are the people who administer medicines to children often on a daily basis; their insight into the challenges they face has heavily influenced our work and will continue to do so. We also very appreciative of the pharmacists recruited from the NPPG who make up the third party of the Medicines for Children partnership.
Like many members of the board, I have a very personal attachment to the work of Medicines for Children, having helped it to grow from such humble beginnings to the international powerhouse it is today. Judging by the consistent user numbers, it is still a much-needed source of information for parents and carers, and I hope that we can continue to improve and expand our resources for the next generation of parents.
Dr David Tuthill is a consultant paediatrician, and was the RCPCH Officer for Wales from June 2018 to December 2022.
- *Names and other information that could identify someone have been changed.