Delegate: Sheffield Children’s Hospital Narcolepsy Team
Affiliation: Sheffield Children’s Hospital, UK
Short Bio: The Narcolepsy Team is a multidisciplinary group of staff but below is a bio of our Lead Nurse – Janine Reynolds.
The role of the Narcolepsy Clinical Nurse Specialist is to ensure my patients and parent carers have access to information and advice about the diagnosis and treatment. I help to make sense of a large amount of unfamiliar information, and support the decision-making and care, treatment and follow up arrangements. My role involves practical and emotional support throughout the journey into adult care.
I provide clinical advice, and discuss any concerns about medication, treatments, investigations, from school through to university life and beyond. I advocate for my patients at the MDT meeting, where investigations are discussed and recommendations on treatments are made. I provide a wealth of support signposting to different services, both within the hospital and the community, to support their care needs.
I also guide through complex systems meetings, help and support the access to benefits, Educational Health Care Plans, travel life style management and family issues. Our team also goes the extra mile fundraising to put on these amazing family days so that patients and families are not alone on this holistic journey.
Patient quote:
“My son would absolutely not be where he is today without the help and support of these amazing people!! I turned to them so many times and never felt alone in this battle because, a battle it certainly is!!
My son is now 18 ,its so lovely to see how appreciative he is too, to all the team and he too never feels alone or abandoned”
Activity: For the last 10 years Sheffield Children’s Hospital Sleep Team have fundraised and organized family days for their narcolepsy patient cohort. The team support families living with the rare sleep disorder narcolepsy from across the UK’s South Yorkshire region and beyond. These annual days offer a network of peer support, alongside themed workshops and informative talks. Each year the team give up their time to fundraise, plan and organize this amazing day for families that use their service. This year the team chose to promote World Sleep Day at the event to celebrate the value of achieving healthy sleep.
At this year’s event families could choose to take part in a creative pottery session led by a professional ceramicist, a psychology-led collage workshop and various team games. There was also an opportunity to attend a number of talks by clinicians and from a former patient of the clinic, now an adult living with narcolepsy, who delivered an emotional yet inspirational talk. As well as this, families benefitted from levels of peer support that can only be found at large meet ups of this nature. Parents found that interacting and sharing knowledge and experience of others in a similar situation in an informal, friendly atmosphere was truly invaluable.
Quotes from the day included:
“The benefit of meeting people and taking away contact details can’t be measured”
“Great to meet everyone and see people at different stages of their journey and, in that, appreciate aspects of your own journey”
“Opportunity for us to meet other families and hear ‘success’ stories”
“I really like to hear other people with narcolepsy’s experience on life. I think it helps younger ones to see you can live a normal life”
Location: Sheffield, South Yorkshire
Date of Activity: 9th March 2024
Submitted by: Lowri Thomas
