Our two-year-old son was diagnosed with AML Leukaemia in September 2019. When we arrived at the Royal Manchester Children’s Hospital, we were told that he would need a Hickman Line through which his treatment and medications would be administered. When he had his first Hickman Line put in, we were told about the little bag that the line could be tucked into. We tried this with him but the bag was too long and he was trying to fiddle with the lumens at the end as the bag moved around. After the first round of treatment after 7 weeks, we took him home for a week before his bone marrow biopsy to check how effective the treatment had been. His Hickman line was secured with a dressing and safety loop. We weren’t advised about the importance of this safety loop when we left hospital, so we just thought its purpose was to shorten the length of the line hanging down his body. After one night, the safety loop had undone (but we didn’t know that we had to re-loop it) and during the week it must’ve loosened itself (along with some tugging by him) so much so that by the following week, on admission to day case to have the bone marrow biopsy, the nurse was unable to bleed the line back. She realised it was hanging out so they had to take it out under anaesthetic. He had his second Hickman line put in the following week. We were then told about the Tookie vests. Emma, one of the research nurses, explained about the purpose of the vest and we thought it would be perfect for him to stop him touching the line. Emma gave us two sizes to try, both of which fitted well under different T-shirt’s and he seemed to like wearing them. He found them very comfortable as he had been used to wearing vests anyway but obviously hadn’t been able to wear them post diagnosis as the nurses needed access to his line. He loved having his ‘wiggly’ (the line) tucked into the pocket and didn’t want to take the vest off at bedtime. I’d bought some fabric pens for him to personalise his vests but he loved them so much that we didn’t need to prompt him into wearing them. After the first time he put it on he didn’t take them off for 5 months! He even bathed in the vests, which we found brilliant as the line was safely tucked into the pocket keeping dry, whilst he could sit and play in a shallow bath. The vest obviously got wet but we would then remove it and replace with a dry one! The vests washed and dried very easily and the Velcro stayed sticky at the back. He unfortunately needed a third Hickman line putting in (as the second one became infected) and the third one was put on the other side of his body. This didn’t prove to be a problem with the vests though as the pocket was removable so it could be placed on the opposite side to accommodate the new line. He would take his own wiggles out of the pocket on the side of the vest and put them back in after treatment was administered. He loved the vests and would ask for them to be put back on after baths straight away. We would highly recommend them to any family with a small child and we talked to lots of other families on the ward about how brilliant we’d found the vests. He finished his treatment in March 2020 and his line was removed. He wore the Tookie vest still for a couple of days until we were back at home! He still occasionally takes it out of his drawer in his bedroom and says ‘my hospital vesty’ so he remembers wearing them and we think he thought they were just as amazing as we thought they were! We would highly recommend them to any family with a child needing a Hickman line. Thank you, “This is feedback received about a patient who in the end we referred to as our ‘Model Tookie Patient’. We had initially approached this family on learning that the patient needed a replacement Hickman line. After consenting the patient spent several weeks in hospital and during this time he would proudly show off his vest around the ward, so much so we had parents phoning us about the vests and asking to participate in the study before we had a chance to see them in person. It was a pleasure to see how positively the patient was impacted, and I look forward to seeing the effects on other children here at Royal Manchester Children’s Hospital”.Senior Oncology Research Nurse - Royal Manchester Children’s Hospital
“The Tookie vest is easy to use, and my child has said that they are comfortable to wear. The Tookie vests provide re assurance to me as a parent, that my child’s lines are securely tucked away from the nappy area. My child has a central line that can become easily contaminated, if this happens, then it could potentially cause my child to have life threatening sepsis. The Tookie vest has given me peace of mind that the central line is tucked away securely, to minimalize the risk of becoming infected. The Tookie vest has made a big difference, to not only my child’s life, but our life as a family as well.”
Oncology QuoteAdvanced Neo-Natal Nurse, Practitioner & Lecturer
"The vest is easy to use. It gives confidence that the line is secure. This will lead to more normal handling of the child by both clinical staff and parents. This confidence to touch the child and allow the parents to interact in a normal way brings normality to the child’s life, enhanced the parental bonding process and allowing the child to act like a child."
"I have just put the vest on it was a bit big but can adjust it looks good and doesn’t affect his other bags an tube, like the fact that it can be washed and that it can be made smaller white would be better for babies as can see it through clothes its very thick and strong material, going to try it for few days to see if it makes him sweat as when he gets hot it causes the line dressings to peel doesn’t seem to bother him wearing it though so all round good start :) I love the fact that he can’t get his line to pull at it and that the end goes into the little pocket so keeps clean less risk of infection from his other bags."
Oncology QuoteCONSULTANT PAEDIATRIC SURGEON, ROYAL MANCHESTER CHILDREN'S HOSPITAL
"As a children's surgeon, I see first hand the concerns that parents have around care and security of their child's central line and also the implications of premature line removal. The tookie vest aims to give both actual line security and also peace of mind to families, something that we have been waiting for in central line care."
Renal QuoteConsultant Intervention Nephrologist City Hospital, Sunderland
“Vascular Access is the cornerstone to providing adequate HD which is ultimately a life-saving therapy and as a surgeon who is published on the complications of catheter displacement, I understand and can see the real value to patients that Tookie’s Renal vest provides. As Chief Investigator, I am delighted to be part of a research team that includes my own patients which has contributed to the design of a medical device that will improve patient quality of life on a global basis.”
Renal Quote “When I first became a HD patient, I was totally unaware of what was to come. Four months into my treatment, I was introduced to Tookie. Their concerns for the comfort of HD patients was obvious from the beginning. The vest gives comfort and modesty in a mixed unit, but most important of all, it gives security with restricted movement to the neck line, decreasing the possibility of having to replace the neck line”.
Read more about Dorothy's story here
Tookie Renal Patient Ambassador
"The vest is great, this new line has managed to stay in longer than any other except his first line, which is fantastic"
"We thought the Tookie vest was a great idea. I was so intrigued to see it in the making and I'm glad we did. It's soft, lightweight and easy to wash. My son finds it comfortable to wear and forgets he's even wearing it. With him only being 3 and just starting nursery, we were worried about him playing with the other children and possibly having his brovaic line (mr wiggly) accidentally pulled, as it just sat in a bag around his neck. Now we will feel much more relaxed. He loves football and has just started football training, he wears the vest each week to football, it allows him to play without having to be afraid of joining in, and he enjoys himself to the max!!! The vest is invisible under his clothes."