WellChild parents deliver workshop at prestigious conference

Posted on the 28th February 2017

Doctors Pledge

Parents from WellChild’s parent-led campaign #notanurse_but and Mother’s Instinct were invited to deliver a workshop with paediatric trainees at this year’s London School of Paediatrics Conference at The Tower Hotel

The Focus

The conference focused on the empowerment of parents, children and young people in their healthcare. The session was held in conjunction with Medicines for Children and Meds IQ, and brought parents and doctors together to develop practical solutions to improve medicines safety, explore ways to improve communication and share learning to ensure the best outcomes for young patients.

Patient Experiences

Patient experiences were shared with doctors to encourage positive change, with roundtable discussions focusing on priority areas as identified by members of the WellChild Family Tree’s online forum.


Hayley explained how her daughter’s (Holly) condition changes daily – sometimes hourly, which means that current up to date information is needed to be able to treat her confidently. When there is a failure for teams involved in her care to communicate, Holly is put at increased risk of her symptoms becoming irreversible the longer she is left. Conversely, Hayley was also able to demonstrate ‘what good looks like’, and how good communication and team working enables her daughter to receive the right care at the right time, avoiding a crisis situation for Holly and her family.


Emma followed this up with an example of where her son Charlie’s consultant had provided her with a letter that she is able to show doctors at her local hospital should she feel as though she is not being listened to.


Jo shared her emotional story of how she knew something was wrong when her daughter Jasmine had been admitted to hospital, but that her concerns were not acted upon, and how the observations that had not been done could have made all the difference to Jasmine.  She focused on how parents recognise deterioration and escalate care when at home, but should be given the same voice as health care professionals when their child is in hospital; and that to do this they need adequate information to be able to advocate for their child.

Group Discussions

These ‘patient experiences’ presentations were the perfect introduction to group work, focusing on the three priorities for paediatric training that had emerged from consultation with members of the WellChild Family Tree’s online forum.  The priorities highlighted are: a good approach and attitude amongst professionals; joined up working across all teams/colleagues involved in a child’s care; and the need to build relationships with the child and their wider family.

Some wonderful pledges of support were made by doctors as a result of discussion:

I’m a doctor and I will…

  • Personally review any child I’m asked to see by nurse, parent or junior colleague
  • Listen to the parent voice and support parents in developing passport/apps to hold patient information
  • Take the time to explain drugs I prescribe for my children clearly to the parents and encourage them to ask questions to clarify
  • Signpost parents to ‘medicinesforchildren.org.uk’
  • Invite parents to share their experiences
  • Always make sure I listen to parental concern and review the child properly
  • Write clear action plans for children

I was so excited to be part of the London School of Paediatrics day and be able to talk to all our future Doctors about the real life issues that families face when caring for a child with complex health needs. The doctors were so engaged and really thought about what was being said, as afterwards they were giving us examples of how they could change the way they practice to eliminate those things happening in the future. They all said how much they appreciated listening to our presentations and they said that they won't forget our stories, which was great to hear as it proves that what we as parents are doing is having a positive effect on future services.

Mum Hayley after the conference

This is part of an ongoing collaboration with Medicines for Children & Meds IQ, which began at the RCPCH conference 2016.  Plans for 2017 include development of resources for parents, carers and professionals, as well as a workshop at the RCPCH conference in May 2017.  If you would like to get involved or know more, contact us at familynetworks@wellchild.org.uk

Read more posts...

Six year old Theo’s WellChild Garden Makeover!

Six year old Theo has an unidentified genetic syndrome which causes severe hypermobility and uncontrolled epilepsy. He also has sensory processing difficulties and developmental delay. Theo needs 24 hour care, and constant support when using...

Posted 22 Oct 2018