GenerationR Young Person’s Advisory Group Tookie Feedback

Monday 11 May 2020

The GenerationR Alliance is a National Young Persons’ Advisory Group (YPAG) made up of local YPAG’s across the UK. Groups are funded by the National Institute for Health Research (NIHR) and/or other National Health Service (NHS) organisations, through various channels.

The GenerationR Liverpool Young Person’s Advisory Group (YPAG) was set up in 2006 and currently has 20 members aged between 8-21 years old. Some members have experience of taking part in health research, some have experience of living with a condition or disability, and some wish to pursue a career in medicine/research/science.  The Liverpool YPAG meets approximately every six weeks at the Institute in the Park at Alder Hey Children’s NHS Foundation Trust.

We welcome Stephen from Tookie with regularity either in person to present the group or we receive e mail updates on his products and we feedback to him our individual and groups thoughts on his design process, the suitability of his products and offer advice as a when we can. It is always a pleasure to have Tookie on the agenda to hear about their progress and how each step is guided by a clinical team and how the patients and families are at the very heart of whatever they do.

Here is some of the feedback we have received from members of the group.

  • “What is hugely refreshing is that Tookie listens, takes our comments onboard and then gives our group valuable updates. His passion for his work is infectious and our group and its facilitators gain many things from our ongoing collaborations”.
  • “We love his phase ‘Patient and Family Engineering’ and the group are always delighted to be approached and see that the feedback is incorporated into his design and development process”.
  • “I think the Tookie Initiative will allow many children receiving invasive treatments to have a more enabled and happier lifestyle. It’s great that the clothing allows children to enjoy play without any limits or worries”.
  • “Personally, I believe that the work done by Mr Tooke has revolutionised the lives of a lot of patients by enabling children to play in a safe environment. In addition, he has persistently come back to our group to improve his work to create a more child-friendly product and has continuously acted upon our feedback”.
  • “Hi Jenny, I looked at this yesterday and can I just say, this Tookie fella has really come a long way. I feel as though this leaflet is perfect to understand, it is very visual, and you can picture exactly how everything works and if that wasn’t enough already, the text boxes further contribute to the understanding.
  • Personally, I believe that the leaflet is very pick-up-able and i am sure that others will think the same. Furthermore, I am assuming that a version of the booklet is also online due to the “hover over” instruction and so I conclude that the leaflet was good enough already for mature ages, however, this introduction of further information online is a revolutionary concept which leaves me to conclude that this leaflet is a complete success”.
  • “All of the items created by Tookie will be able to improve the lives of many and profoundly impact their daily routines. Tookie’s involvement with patients and the public during the design of the clothing shows that they considered the importance of suitability and practicality when creating these clothing items and therefore created an extremely beneficial product”.
  • “It is very difficult for young children and children with additional needs to understand why they need invasive procedures. Tookie secures the device whilst giving parents and medical professionals the peace of mind that the device is protected”.

In these difficult times we must do everything possible to keep our most vulnerable children safe at home and away from the hospital environment as much as possible and that is why we will keep supporting Tookie in their work.