Parents & Carers

Here are some pictures of children enjoying themselves on our residentials during 2016

Being a parent of a healthy child can be hard at times but the added complexities that come from having a child who needs to take regular medication, have overnight gastrostomy feeds or who is on peritoneal dialysis can make parenting very tough indeed. Having to have blood tests or other painful proceedures is stressful for your child and it can be hard knowing how to support them.  Having to attend hospital regularly for clinics or to be admitted for an operation unexpectedly can really affect your family's routine functioning and cause knock-on effects on your other children.

We recognise these different issues and there are people within the team to help you!

Social workers can discuss concerns you may have about coping with the emotional, practical and financial impact on your family.  They understand the difficulties of managing your child's illness in addition to everyday responsibilities you have in terms of caring for other children in the family and balancing work and other commitments.  Discussing these issues with a renal social worker can be helpful as they can work with you to find practical solutions as well as providiing emotional support.  The social workers will often be introduced to you on the ward or in clinic where they can have an informal chat with you regarding the needs of your family.  They can also be contacted by phone on 0115 924 9924 ext 62498.

Play specialists can help prepare your child for painful procedures or a forthcoming operation.  Claire is usually available during Nottingham clinics.  Claire also organises residentials each year for some of our children with chronic kidney disease.  Please click here to see some photos of children enjoying 2016's residentials.

Dietitians can give you advice on feeding, not just telling you what foods to eat, but practical advice on dealing with children who refuse to eat or who vomit regularly.  

Although we have less psychology support than we would like at present, we can ask a psychologist to see you if your child has significant problems or anxiety relating to their kidney disease.  

Youth workers are trained in helping young people learn to take on the responsibility for their own kidney disease and treatment.  They help support young people too in building their confidence and self-esteem which can so often be a problem.

Finally, the best support can come from other parents who know exactly how you feel.  We are always happy to try to put you in touch with a expert parent - someone who has a child with a similar condition to yours but who might be just a little further on their journey.  One of the reasons too that we set up a Facebook page was to allow parents to make contact with and support one another.  

Some of the website links are to general or specific support groups.  

This area of the website is for parents and carers.  Do tell us of any other ways we can support you! Please This email address is being protected from spambots. You need JavaScript enabled to view it. any suggestions or speak to any of the team when you come to clinic.