Tookie Blogs

My name is Heather and I am the mother of Ceri, our seventeen year old daughter who received her first Tookie Garment in May 2019 and her second Tookie Garment came as a gift through Tookie via a company called Renal Services UK who have very kindly sponsored Ceri to receive Tookie replacement garments for the next two years.

We received the second garment for Ceri just before Christmas in clinic at Alder Hey Children’s Hospital gift wrapped in Christmas Paper from Tookie which she opened there and then – lovely touch Tookie!

You will find on the Tookie web site a testimonial from me which I wrote late last summer, and I thought it would be timely to update you on my family’s experiences since then.

So, here are my thoughts, observations and activities six months further on and how Stephen and his amazing Tookie team have quite literally made such an unbelievable impact on our lives – I call it a transformation.

We were told for seventeen years by everyone who we came into contact with who looked after Ceri’s health that nothing could be done to stop her pulling her Gastro Mic-Key Button, not that they really believed me anyway, but then Stephen stepped into our lives and we have not looked back; and I no longer have I had to ask that question again.

Did I mention that we are a Welsh speaking family? No, well you need to know this as this becomes relevant in a minute.

Not that 2019 was any more difficult as a family but as the year unfolded it became different.

Stephen sent us design ideas and prototypes which did not work. We thought that here we go another dead end until May 2019 when through the post a new sample appeared. We had told Stephen that the only thing that really worked was a wet suit that prevented Ceri from grasping her button and the new garment incorporated this idea by embedding Neoprene into the front of the garment so she could no longer grasp the button nor her Catheter Line. Although we were initially still sceptical, as the days turned into months that Ceri was now wearing the garment in purple, her favourite colour and she was not able to pull her Mic-Key Button and to date that remains the case it is why I call it ‘transformational’.

Why is 2019 different from a family perspective? Well we feel that part of our lives has returned to normal; what Stephen calls #ALifeMoreNormal.

We love our daughter very much and adore her in every possible way, but madam challenges us mentally. The Gastro Button pulling had become her controlling mechanism and one of us had to stay by her side to prevent this but wearing her Tookie garment she could no longer pull the button but importantly forgot about it.

As our confidence built to leave Ceri’s side, I was able to do new tasks like answer the telephone if no one else was around – it sounds obvious I know but these simple tasks where previously prohibited.

My daughter seems to be more content in herself. She uses verbal sounds and points at objects now instead of pulling at her Mic-Key Button when she is asking for something. This means we; the family have more time for things we love. We don’t have to run across the room to get to her side, often late because her button would be out causing her harm.

My passion is baking, and I have been baking for Wales! I have been baking cakes since Ceri has been wearing her Tookie Garment including over 100 bara birth (welsh fruit cakes) which I have sold and raised over £500.00 for Alder Hey Hospital Charity and the special needs school she attends – my part of giving back – I believe it is good to give to receive.

Stephen calls most weeks to check on Ceri and the continued effectiveness of the Tookie Garment which is lovely but I fear that I cannot find the words (not being Welsh has any bearing) to express our families gratitude to Stephen, his amazing Product Designer Khloe and Garment Designer Carla who took a doubting family to a firm believer with their continued efforts to find an answer.

I have watched his new designs for children with Enteral Needs develop which started with Ceri with great interest as I know that they will have a massive impact on families like mine. Stephen calls it ‘Patient and Family Engineering’ towards #ALifeMoreNormal – I call it a transformation – or very simply a blessing.

Heather, Ceri’s Mother.

January 2020

I began my nurse training in the mid 1970’s at Leeds General Infirmary. I look back with great fondness as I recall my days in nursing school where we had to sit in alphabetical order and wear our full uniform in the classroom. Woe betide if you had your hat folded incorrectly or you wore the wrong shade of tights; dark grey, not black or tan! 

My original intention was to train as a nurse and then travel the world, however, I met Graham just before I started my training and by the end of my training we had got married. I managed to travel all the way from Leeds to Huddersfield, about 30 minutes across the M62! I am still happily married after 41 years with four daughters and seven grandchildren, not forgetting the dog Milo.

My desire to travel was given another opportunity in 2005 when I was asked to join a team to visit Zalau hospital in Transylvania, Romania. Since then I have visited Romania, in a voluntary capacity, every year providing education and training to nurses. Romania is a beautiful country and I have received wonderful hospitality; I would recommend Cluj-Napoca or Bucharest as places to visit as you will be amazed how cheap a pint of beer is!

Also, in a voluntary capacity, I am an elected member of the Infection Prevention Society Board (IPS), first as honorary secretary and now as the England Country Lead. Being a Board member has provided opportunities to work at a national level developing national guidance.

Being a nurse has without a doubt been the best career I could have chosen. Whatever role I have had in nursing, the importance of compassion and caring has never left me by putting patient experience and patient safety at the centre of my work. I have had many highlights in my career; probably the best was when I was nominated by my hospital board to attend the Queens Garden Party with my husband. I have to say there is little to match eating cucumber sandwiches in the back garden of Buckingham Palace.

My first contact with Tookie was when I was contracted to the Yorkshire Humberside Academic Health Science Network who came to meet with me seeking my assistance with a specific piece of work on IV Access. As soon as I heard about their journey and the ‘Patient Centred’ approach they have to design and development, what Stephen calls ‘Patient and Family Engineering’ I knew that if an opportunity arose to join the Tookie team I would jump at the opportunity – well here I am, the Tookie Clinical Advisor.

I have recently read the web blog from Ceri’s mum that has absolutely confirmed why I am working with Tookie. The dedicated work of Stephen and Khloe to get the right design for the garment for Ceri has been amazing and the impact this has had on both mum and daughter’s lives is phenomenal #ALifeMoreNormal.

One of my first tasks with Tookie was to act as their Clinical Advisor in a formal Patient and Family Involvement Focus Group facilitated by the NIHR CYPMedTech Co-operative with the Gastro/ Nutrition Team at Sheffield Children’s Hospital led by Consultant Dr Arun Urs and his amazing TPN Nursing team. This was all about listening to the families and their daily challenges keeping their children’s long-term devices safe and with dignity. I had nothing but respect for these families for sharing their experiences and providing insight into how effective designs would provide a better quality of life for their children and them. 

This was my first experience of the ‘Patient and Family Engineering’ concept that Stephen had described to me. Wow, this is real patient centred care and looking forward to working with the team to find solutions for these families and #ALifeMoreNormal.

Carole Hallam

MSc (Infection Control), BSc (Honours), RN

Independent Nurse Consultant

5 February 2020