A parent of a child with leukaemia suggested to Leanne that a document full of practical help would be beneficial to give to families upon diagnosis. We took this idea and opened a secret Facebook group, invited around 20 parents we knew with children treated in Leeds Children Hospital, and asked them their thoughts. Within two hours, the group had grown to over 100 people and everyone was keen to help.
Over the course of a few months, we guided the group with questions and topics and a volunteer managed the ideas being suggested, collating them all into a working document. When we came to look at the ideas suggested, it was apparent that there was probably enough content for two or three different brochures – emotional issues, medical issues and very practical issues.
We felt that initial diagnosis was not the best time to discuss emotional issues with the families – that comes later on, when the initial shock of the child’s diagnosis wears off. Also, we are not medical professionals - we are not experts at all - and there are many excellent organisations that support the NHS that can assist in medical issues.
So we decided that dealing with the deeply practical issues was our way forward and the area where we could make a difference for families.
We designed our first brochure solely for Leeds Children Hospital (Wards 31 and 32) as that is the place we know best and where we have the contacts. The brochure includes information, hints and tips about length of hospital stays, support available, what to pack in your hospital bag, staff you will meet, emergency trips, parking, nearby shops, hygiene and shared spaces.
“None of it is particularly difficult or complicated but it’s all in one place and it’s the sort of thing that can help to make a family’s life a bit easier when they’re having to cope with so many other things.”
We mention a couple of other charities that work closely with Wards 31 and 32 and so, once we had a draft document (designed by the brilliant Big Beans Design), we sent copies to the manager on Ward 31, to our old support nurse and to representatives of the two other charities. Once everyone had signed off on the document, we had 190 printed and donated them in October 2018 to Ward 31.
The hope is that the document will provide support for parent’s in their darkest hours, and will make navigating their new world as paediatric oncology parents that little bit easier. The feedback so far is positive, and assuming that continues, we will look to roll out a similar document to other units if they need of it.
We would like to thank that parent for the original suggestion, the volunteer (also a cancer mum) who helped collate all the information, and all the group members who contributed to it. It really is a Ward guide for parents, by parents.