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Why do we need more information about medicines?

Each medicine comes with a patient information leaflet, written by the company that makes the medicine. But, these leaflets are often about the use of the medicine in adults, and not in children. They may include complicated information, and may not answer all your questions about the medicine and your child.

We know that parents and carers may be anxious about the dangerous consequences of making a mistake when giving a child medicine at home. We realise that medicines used for children can be complex. And, we understand that clear and accurate information is crucial.

The beginnings

The Royal College of Paediatrics and Child Health (RCPCH), and the Neonatal and Paediatric Pharmacists Group (NPPG) have a history of working together on issues concerning medicines for children. In 1999, we co-authored the first edition of Medicines for children, with clinical guidance on drugs given to children. The success of this book led directly to the publication of the British National Formulary for Children - an important step towards improving the information on prescribing children’s medicines for doctors, pharmacists, nurses and other health professionals.

But, we saw there was a clear need for information for the parents and carers of those children being prescribed such medicines.

In 2006, RCPCH and NPPG set out to understand what information parents and carers wanted about their children’s medicines, and how they wanted it. We commissioned a market research organisation to conduct telephone interviews with 600 people. And, we ran focus groups with parents from a range of backgrounds for face-to-face discussions.

We asked where and how they got information about their children’s medicines, how satisfied they were with the advice, and what further information would be helpful.

Starting to write the leaflets

Following our research, we saw that a national resource for parents and carers was needed. The national children’s charity, WellChild, joined RCPCH and NPPG in a partnership programme and we agreed to pilot the production of 25 individual leaflets on medicines used for epilepsy and pain management.

RCPCH and NPPG would provide the clinical expertise, and WellChild the links to parents and carers. RCPCH would also administer the programme.

Two working groups of paediatricians, pharmacists and a medical editor liaised with WellChild to develop a leaflet template, with sections intended to answer the questions and concerns that parents and carers had told us they wanted to know. The groups collaborated to write this first set of leaflets. Our library of leaflets slowly grew, with the help of a dedicated group of volunteer authors of doctors and pharmacists.

Our first website

In April 2009, we launched our website at the RCPCH Annual Conference. The website allowed parents and carers to access all of our information at no cost. We told our colleagues across the health service so that they could signpost their families to this information source and use it in their own clinical practice.

A growing bank of leaflets

We now have nearly 200 information leaflets. We have developed a rigorous production and review process so that the information is clear, accurate and up-to-date.

In March 2011, our leaflets were certified by The Information Standard. We are now included on NHS Evidence, which gives access evidence-based health information, and in the NHS Direct resource directory used by its call nurses.

New website and next steps

In December 2011, after consultation with parents and carers, we launched the new Medicines for Children website with a new logo. We added videos and new leaflets about how to give different types of medicines, news about medicines and stories from parents who use our leaflets.

We will continue to develop more leaflets, and review those that have been published.

If you would like to get involved, or would like to find out more about the programme, please get in touch.

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"I just wanted to say what an excellent website this is - well done."
Teresa Griffin, Deputy Neonatal Network Manager