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What is the positive change that has emerged through new collaborations or partnerships during Covid-19 that your project is going to embed?

Our children’s hospital covers a wide geographic area, some family travel over 3 hours for treatment. During COVID lockdown we rapidly worked with a pharmacy chain to set up a home delivery service for complex high risk medications that has been transformative for our families, and primary and secondary care colleagues across our region. The beginnings of KidzHub

Pre-COVID, the NHS system forced some families to travel hours to the children’s hospital to get medicines, many are on 10+ medications. Many liquid children’s medicines have short expiry dates resulting in fortnightly journeys.  Many GPs and community pharmacists tried to help by prescribing and dispensing locally but outside of their comfort or competency zone, and with written communication of changes slow and risky. They had no access to our electronic notes to show that children were being safely monitored. Specials (specially made up unlicensed medications), can be dangerous with different brands and concentrations.

What does your project aim to achieve?

Last year we demonstrated with a previous project (KidzMed) that families have huge trouble getting high risk medicines. We mitigated some of that risk by teaching young children to swallow tablets.

Post COVID, we want to embed KidzHub, a one stop portal for families across our region to contact for repeat high risk prescriptions to be delivered to home or close to home.

KidzHub will be run by a multi-disciplinary team of dedicated children’s pharmacists, doctors and nurses with their specialised knowledge of polypharmacy and monitoring requirements and have full access to blood monitoring, to electronic notes and to specialist teams. We have demonstrated that with specialist knowledge comes economy of scale and negotiating powers (liquid medicines have to be bought in expensive large batches)

Many of our families don’t drive, live far away and finding childcare for a disabled child is difficult just to pick up medication.

How will the project be delivered?

This funding will be used to release time for a core team of pharmacist and paediatrian (who is also our IT lead) to set up KidzHub. Tasks include testing the hub, writing protocols, collaborating with regional GPs, pharmacists, regulators and commissioning bodies for long term sustainability. Stakeholder feedback were optimistic that KidzHub will quickly realise overall healthcare savings by reducing risks, economy of scale, converting to tablets quickly (we gained £42K savings in 3 months) and getting it right first time by sharing specialised knowledge.

Importantly parents want it. Many tell us of their frustrations of being sent pillar to post to get repeat prescriptions only to get another different bottle, different taste, different strength.

Our adult pharmacy colleagues, who we are collaborating with, has already successfully set up and tested a novel integrated prescription hub with local GP practices which improved safety, timeliness and quality of prescribing.

How is your project going to share learning?

One of our team sits on the joint medicines committee of the national Neonatal and Paediatric Pharmacy Group and Royal College of Paediatrics and Child Health. Getting high risk medicines for children is a national problem encountered by every UK children’s hospital. 1 in 17 people have a rare disease, 50% are diagnosed in childhood and new but high risk medications have been transformative for these children.

For our project we will be collecting continuous improvement data and live feedback from families and staff. Important outcomes will be patient safety and medicine costs. If we show this to work we will quickly share learning nationally to other regions and children’s hospital.

We have a strong multi-disciplinary team including parent involvement, frontline staff, data manager and QI lead. Our recent QI successes include HSJ Value award and NHS sustainability 2020 awards.

 

How you can contribute

  • Share how complex medications are delivered to patients in your regions
  • Share any issues in medication for children you have come across in your practice

Plan timeline

7 Jun 2021 KidzHub Project Start - team, protocols, test
5 Jul 2021 Co-production - Host Parents and Young people forum
2 Aug 2021 Host regular virtual stakeholder townhall meetings - ideas, help, progress, sense-check
6 Sep 2021 Start small - KidzHub testing for 1-2 sub-specialties. Continuous patient feedback
6 Dec 2021 Embed - More subspecialties & secondary care on board
3 Jan 2022 Sustain - integral part of clinical care in region
2 May 2022 Spread - story share with other regions. Advocacy for all families.
6 Jun 2022 Submit project for publication in peer review journal

Project updates

  • 20 Feb 2021

    Thank you so much to the Q Community / Health Foundation for giving us this opportunity. We are very excited to get started

    The money will be used mainly to release time for the team to do the massive background work to setup and embed this new way of working. Like much improvement work, a lot of this work is already happening in people's spare time on a voluntary basis

    With the massive COVID on our hospital, releasing staff is tricky. Hence we have pushed back the timeline to as far as possible - within 3 months from signing the contract.

    Good luck to all Q exchange projects! We can do this together

Comments

  1. Great to see this project funded!

    Access to meds can be a real frustration for parents of kids with complex medical needs- with a lot of time wasted when they have so much else on their plate.

    In our Q Exchange project funded last year, we found families were very keen to help improve the system. We found lots of different ways of involving families- from having parents at our project meetings (videocalls make meetings easier to attend for some), short surveys with families in hospital, online surveys circulated through charities & facebook . We also had families create videos for us using your phones at home sharing their tips and advice with other parents. We used some of our funding to buy gift vouchers as a thank you. Definitely worth working with parents throughout the project, as partners.  Best of luck! sounds a great project.

    1. Hi Bethan, Thank you for your comments. Yes, we will be working closely with children / young people and their families. I especially like your idea of getting families to make videos, and we will definitely consider this.

       

    2. Thanks so much!

      Definitely will be co-producing with families as that's the only way of success

  2. Briliant idea to scale up across the region using your early improvement success in one hospital. I note your plans to collect continuous improvement data and live feedback from families and staff. How will you collect and respond to the live feedback? Also do you have families contributing to the ongoing co-design of how you will refine and deliver the project?

    1. Thanks Annette absolutely co-design and co-production is vital to the success of our project.  We have families involved (particularly families of children with complex medical problems) and young people's groups such as YPAG north-east.  In our previous work YPAG north-east actually completed peer to peer dissemination virtually independently which just shows a bit of the power and enthusiasm of this kind of collaboration.

  3. This seems like a great scalable idea - educating kids to a new skill removing their concerns about and inability to swallow tablets - a life long skill.  Its demonstrated a cost saving in just 3 months.  If this was to go to scale as planned what would your cost savings be for the region and then potentially the UK on an annual basis?   What adaptions do you anticipate other adopters may need to take to make it work for them?

    1. Thanks for your interest

      Having spoke to some community pharmacists they think there is large economy of scale. They have to buy in bulk and if only one baby in their patch needs a rare medicine the rest goes to waste. There is also concentration of expertise so a hub can horizon scan for potential shortages or change in taste or brand.

      Safety is paramount, we have heard of so many near misses from parents - that is a key driver

  4. This is an exciting project and would benefit many children and their families.We know from experience that families with children with complex needs struggle to access appropriate medications in a timely manner.
    Have you considered the Meds QI resources from the RCPCH?

    1. Thanks Sahana for your support.

      This is a really important issue which has been gathering momentum at the RCPCH medicines committee as it is an intractable problem. We have been working with Meds QI (now QI central) to improve medication safety in children and this will be no exception. Thank you

  5. This is a super idea.  Have you thought about connecting with the other children's proposals on here for mutual feedback and support? There is also a Q community special interest group on Medicines Management that might offer some helpful feedback or opportunities for collaboration. Good luck with your idea!

    1. Thank you.

      That is an excellent idea. We have been conversing with many stakeholder organisations to find a way round this difficult problem including primary care, community pharmacists, other children's hospitals and many parents.

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