Jump to content
  • How involving parents helped develop a safer medicines system for children with complex conditions in the community (NICE Shared Learning)

    • UK
    • Case studies
    • Pre-existing
    • Public domain
    • No
    • Steve Turner
    • 02/02/14
    • Everyone


    It is not unusual for children with complex conditions to be under the care of up to five different providers, and to move between three different providers in one day. For example, a child may move from a home care service to the special school, to a short break house, maybe also being seen in an outpatient clinic on the same day too. As a result parents frequently have to repeat the information on their child’s medicines every time they move to another service or a new person is involved.

    The idea for change came about because of concerns that the staff in children’s short break houses were not learning what they needed about children’s medicines. So a new learning package for children’s staff was commissioned.

    Part of the work to design the learning package included a baseline assessment which was conducted with parents and staff. This soon revealed that training alone was not the answer.

    As a result we looked at the whole system starting with the area where most concerns had been raised, which was having an up to date complete list of a child’s medicines available at all times (medicines reconciliation). The old system in place for short break houses involved paying a local GP (not usually from the child’s GP practice) to write up a medicines chart for each child. The process was fraught with difficulties and delays and widely disliked by everyone directly involved.

    So we set about looking for a new way to manage the lists of medicines with more training and more input for the staff in the services involved. We came up with a new (and much more robust) process for medicines reconciliation in the short break houses. This was fully documented in a new policy and involved cross checking by both the staff and the parents.

    Just before this went live, we asked the parents to review and comment on it and they said:

    "If you’re producing an accurate and up-to-date list of my child’s medicines, why keep it at the short break house, can’t it go with my child?"

    So the My Medicines chart, which travels with the child, was born.


    This project was commissioned because of an issue with multiple medicines records being held by different agencies for local children with complex needs and at the end of life. The project was highly commended by NICE and a poster was presented at the NICE Annual Conference in 2015 (see poster below).

    This duplication of records was believed to be a major risk factor for medicines errors and a waste of clinical time. It also meant that parents needed to repeat information about their children’s medicines time and again, as they accessed services, including inpatient services, tertiary centres, community paediatricians, GPs, specialist nurses, short break houses, homecare services and special schools. The children in question had complex needs, including enteral feeding tubes, ventilation, epilepsy and rapidly-changing medicine charts of over 15 drugs per child, with complex titration regimes.

    Parents of children with complex, life-limiting medical conditions helped to develop a hand-held paper record of their children’s medication regime, which was used by all health and social care staff caring for them across a number of agencies and settings.

    At the start of the project a baseline assessment was conducted with parents and staff. It revealed delays in medicines information reaching children’s GPs, difficulties obtaining repeat prescriptions, and a lack of confidence in the organisation of medicines services locally. As a result, a hand-held personal ‘My Medicines’ chart was designed, detailing all drugs prescribed, doses, formulation, method of delivery and special instructions for each child. Initially designed for use in short break houses, the group quickly saw how useful the chart would be if parents could ‘own’ it and take it with them to all their children’s appointments as a central record.

    In the first month of the ‘My Medicines’ chart being piloted in practice, 17 ‘near miss’ medicines errors were captured, reported and resolved thanks to the new cross-agency system. Eleven of these ‘near misses’ related to problems of communication between different service providers. Previously such errors and near misses were not being logged as incidents or tracked across organisations.

    The project was well received by parents and carers, and resulted in improved communication and engagement between different clinical groups and providers, with the child’s own GP at the heart of the process. As a legacy of the project, a Community Paediatric Pharmacist was appointed specifically to work with this group of children with complex needs and their families. The creation of this new Pharmacist post means that there is now one person available to help manage the children’s medicines across many different providers and agencies in the county.


    How involving parents helped develop a safer medicines system for children with complex conditions in the community (NICE Shared Learning) https://www.nice.org.uk/sharedlearning/developing-and-implementing-a-parent-held-medicines-record-for-children-with-complex-conditions
    0 reactions so far


    Recommended Comments

    There are no comments to display.

    Create an account or sign in to comment

    You need to be a member in order to leave a comment

    Create an account

    Sign up for a new account in our community. It's easy!

    Register a new account

    Sign in

    Already have an account? Sign in here.

    Sign In Now