Families of children with CKD
Living with Chronic Kidney Disease (CKD) can affect every aspect of a child’s life, and the lives of those around them. We are here to support children, young people and their families throughout every stage of their journey, from diagnosis through treatment, transition to adult services, and beyond.
We can provide practical support, emotional guidance, information, advocacy and opportunities to connect with others who understand the challenges of living with CKD.
We also raise awareness and understanding of kidney disease within schools, colleges, universities and other educational settings. We can provide tailored talks, training sessions and awareness presentations for pupils, students, teachers and support staff, helping educational communities better understand CKD and the impact it can have on learning, wellbeing and everyday life.
“Thank you so much for the update [from a KW talk]. [They] have come home really positive about the experience. As a family we really appreciate your support. We feel this talk with benefit [them] greatly in the years to come.”
Contact us: [email protected] for more information.
Have a look at some of the other resources and organisations that may help below:
SNAP CYMRU
SNAP Cymru offers free and independent information, advice and support to help get the right education for children and young people with all kinds of additional learning needs(ALN)and disabilities. They give advice and support on a range of issues including assessments, individual development plans (IDP’s) bullying, school attendance, exclusion, health and social care provision and discrimination.
They also provide advocacy, disagreement resolution, discrimination advice, and training for young people, parents and professionals.
https://www.snapcymru.org/https://www.snapcymru.org/get-support/health-support/
Support With Learning
The Welsh Government’s statutory guidance on Supporting Learners with Healthcare Needs sets out the legal duties and practical arrangements for local authorities, school governing bodies, and health boards to ensure children with medical needs have full access to education.
Single Parents Wellbeing CIC is a single parent-led, compassionate, and connected community. We use a peer-led approach to support single parent families, improving wellbeing, preventing social isolation, and helping families thrive.
You can find our website here: www.singleparentswellbeing.com
Email Rachel at: [email protected]
Cbeebies
The Cbeebies get-well-soon series sees Dr Ranj explaining lots of different procedures and conditions through song, there are videos about the kidneys and some of the tests your child may experience such as ECG’s, X-rays and cannula’s.
InfoKid
InfoKid provides information for parents and carers about Kidney conditions in babies children and young people. You can read about conditions, tests, treatments and supporting information, on screen or in downloadable leaflets.
Ready Steady Net
Ready Steady Net has been developed by a collaboration of healthcare professionals working together with patients and carers to help children and young people manage their chronic conditions. On the website you can find videos about dialysis, patient perspectives, peer projects and events.
