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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.

Since March 2011, our leaflets have been certified by NHS England's Information Standard, which is awarded to organisations who produce good quality health and care information. We are now included on NHS Evidence, which gives access evidence-based health information, and in the NHS 111 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.

A step-by-step guide to how we produce leaflets

 
1 - Writing the leaflet

Our leaflets are written by a team of volunteer authors - paediatricians (doctors who work with children) and pharmacists. Volunteers agree to follow our process for writing the leaflets, using our template, and inform us of any potential conflicts of interest.

Our primary source of evidence is the British National Formulary for Children, which provides prescribers, pharmacists and other healthcare professionals with sound, up-to-date information on the use of medicines for treating children.

The early draft is reviewed by a senior doctor or pharmacist who has experience with the medicine.

2 - Editing the leaflet

A professional medical editor edits the leaflet to make sure it is clear and easy to read.

The editor works with the volunteer author to check that all of the medical information is correct.

3 - Reviewing the leaflet

The Medicines for Children team designs the first draft of the leaflet.

Our two leads - a consultant paediatrician (senior children’s doctor) and a consultant paediatric pharmacist (senior pharmacist for children’s medicines) - read the draft leaflet.

They make sure the medical information is accurate, and make suggestions to the editor.

4 - Consultation with healthcare professionals

The Medicines Committee is sent the new draft leaflet to check for any errors.

The Medicines Committee is a joint standing committee of the Royal College of Paediatrics and Child Health and Neonatal and Paediatric Pharmacists Group. This includes paediatricians (doctors who work with children), pharmacists and other healthcare professionals.

The two leads check and agree any changes.

5 - Consultation with parents and carers

Next, the leaflet is sent to a group of parents and carers, based at WellChild. They make sure the leaflet really is clear and easy to read.

The two leads check and agree any changes.

6 - Finalising the leaflet

The editor does a final check, and the Medicines for Children team make any changes to the design of the leaflet.

Two proofreaders check the leaflet for any errors.

Finally, the leaflet is sent to the Medicines Committee Chair to approve.

7 - Publishing the leaflet

Only once it has been checked by this team of healthcare professionals, parents and carers, editor and proofreaders, do we publish the leaflet on our website - for you to read.

Of course, if we need to change anything on the leaflet after it is published (for example, if a medicine is no longer available, or if there is new scientific evidence that affects part of the leaflet), we remove the leaflet, make the changes, and re-publish it.

8 - Reviewing the published leaflet

To make sure our leaflets are up-to-date, we review each leaflet once every three years.

For more information

Download the full production process (PDF, 5 pages)