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  • Improving medicine safety for children with complex needs (a blog by Steve Turner)

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    Inspired by the Patient Safety Learning blog on 'Encouraging staff to speak up', it occurred to me that many examples of good practice that could benefit everyone, are not always shared widely. Time goes by and without sharing these examples across services and organisations, we tend to reinvent the wheel repeatedly.

    In this blog I will explain a best practice example on children's medicines that I share in my teaching work.

    This work came about when I was asked to provide training on medicines management for staff in children's respite care. When I looked at what was needed I raised concerns about medicines safety across the whole medicines and prescribing pathway for children with complex conditions. I spoke out on this and was prepared to walk away from  the work. Instead my concerns were welcomed and I was asked to help develop a new safer way of working.

    Although the project I worked on was initially focused on temporary solutions, I believe it has had a lasting legacy. This includes greater involvement of parents and carers in the medicines process, and the appointment of a Paediatric Community Pharmacist. The project is on the NICE Shared learning database and was highly commended by NICE in 2015.



    From 2008 to 2014 my company ran education sessions on managing medicines in a mental health trust. In common with some other mental health trusts, the provider also looked after paediatric community services. This is not a mental health service. It covers children with complex health needs including enteral feeding tubes, ventilation, epilepsy and rapidly changing medicines. Children under the care of this service may be taking in excess of 15 different medicines per day, have complex titration regimes, emergency drugs with associated care plans, plus numerous ‘as required’ (prn) medicines.

    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, from a home care service to the special school, to respite care, 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.

    Understanding the safety issues

    The idea for change came about because of concerns that the staff in children’s respite care were not learning what they needed about children’s medicines, as the learning was geared to the majority of staff who worked in mental health. 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. It showed delays in medicines information reaching GPs, workarounds for obtaining information in order to administer medicines in the houses and a general lack of confidence in the whole process.

    The status quo was risky and disliked by many

    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 system in place for respite care 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 respite care. This was fully documented in a new policy, and involved cross checking by both the staff and the parents.

    The “My Medicines” chart

    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 in the respite care, can’t it go with my child?’

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

    The "My Medicines" process led to the design and production of a new chart which has to be signed and checked by the parents.

    It resulted in 40 children with complex conditions being offered a hand held paper record of their medicines (produced and validated by clinicians), which they take around with them wherever they go.

    Benefits and reduction of risk

    The new process, which continues to evolve, means that:

    • the child’s GP is now directly involved in day-to-day medicines reconciliation (they weren’t before)
    • the parents are always asked to check and sign the charts (they weren’t before)
    • verbal messages about medicines are never taken
    • incomplete (or missing) directions are rapidly rectified (never worked around).

    Further specific benefits of the new process include:

    • It has reduced the risks of error, by providing full and accurate information on children’s medicine across their entire pathway.
    • It cuts out the need for parents to keep having to repeat what medicines their child is taking to different professionals and care agencies.
    • It frees up medical and clinical time which was previously spent chasing missing information.
    • It has reduced the number of third part handovers and transcribing of prescription information.

    Looking back it’s hard to believe that the old ways of working, which caused so many difficulties (especially for frontline staff), were carried out for so long. These risky practices, or similar, are believed to still be commonplace in England.

    Revealing hidden incidents and near misses

    In evaluation phase of the project we raised 17 medicines near misses. Of these, 11 related to problems with communication of information across the child’s pathway.

    Resolving these has resulted in improved communication and engagement between different clinical groups and providers, and a desire from all quarters to take the project further. Previously many of these incidents were not logged or tracked across organisations. In some cases, it was only due to the vigilance of the staff and parents that they were spotted and errors avoided.

    Embedding change

    The project was well received by parents and staff and resulted in improved communication and engagement between different clinical groups and providers. This included the Consultant Paediatricians (working for the secondary care provider), who were initially sceptical.

    The project was less well received by the relevant medicines and prescribing committees, who were understandably concerned about who owned the “My Medicines” chart and had agreed its content. Explaining this was made more difficult because it is hard to get across the complexity of the arrangements, due to the critical nature of the children’s illnesses, in a committee setting.

    Working in ways that support safety

    I make no apologies for ensuring from the outset that it was the parents who owned the charts, which were designed by the project team (not a committee) to meet all best practice standards. It always worries me that when it comes to cross- organisational working the formal committees and systems in place can inadvertently act as a barrier to safety rather than promoting it. There is no doubt we had designed a safer process and my company was happy to take accountability for any associated risks.

    As a legacy of the project, a Community Paediatric Pharmacist was appointed specifically to work with this group of children. So, whatever evolves will be based on inter-disciplinary thinking and working and will have clear safety parameters. I am grateful to the enlightened thinking of the leaders who commissioned this work and supported this novel approach.

    About the Author

    Steve began his professional career as a nurse at St George's Hospital in London in 1981, eventually specialising in mental health. He also spent a decade working on hospital clinical systems for the American giant Shared Medical Systems, progressing from project manager to Senior Strategic Services Consultant of the U.S. arm of the company. In 1999 he returned to work for the NHS, successfully revamping the Information and Technology department at an NHS Trust prior to a trust merger. A spell in consultancy for a large Cancer Network followed, leading highly successful multi-organisational projects.

    In 2002 Steve returned to clinical practice becoming a nurse prescriber in a Mental Health Assertive Outreach Team. In 2008 Steve set up his own company specialising in clinical educational and patient engagement. Steve has since led a successful interdisciplinary, multi-organisational prescribing project in substance misuse, the development of a parent held medicines record for children with complex conditions (which was highly commended by NICE). Together with his Associates, Steve has also successfully piloted and is developing ‘patient-led clinical medicines reviews’. This was presented at the NICE Annual Conference in 2018.

    Steve is an Associate Lecturer and examiner at Plymouth University. Steve had published articles on mental health service development, clinical education,
    medicines and prescribing and has examples of his work on the NICE Shared Learning Resource.

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