We've plenty of support for young people with IBD here on the blog and the main Me and IBD website, but mums and dads and guardians sometimes need a helping hand too. They need to know they're not alone in all this.
Support for parents is offered by trained Crohn's and Colitis UK volunteers who themselves have ‘been there’ and really understand what it is like to have a child with IBD.
Parent to Parent offers the chance to talk to a parent volunteer in confidence on the phone. Appointments can be booked by phoning the Information Line on 0845 130 2233.
Parent to Parent telephone appointments are available to parents of children up to and including the age of 21. We talked to parents who have used the Parent to Parent Service.
The Family Network is a UK wide network which focuses on the difficulties experienced by children who have IBD and their families and gives them the opportunity to develop informal mutual support. Family Network Group website
Family Days. Crohn's and Colitis UK Groups around the country put on a couple of events each year for families in different parts of the country. Contact the Group and Volunteer Development Team at the charity's office for information.
Booklets and Information Sheets. The booklet IBD in Children: a parent’s guide is now available from Crohn's and Colitis UK. Many of the charity's information sheets have information that you may find helpful. Several have been written specifically to assist parents or older children, and are listed below. For more individual enquiries, contact the Information Service (0845 130 2233).
- IBD Concerns for Young People
- Children and young people with IBD: a guide for schools
- Claiming Disability Living Allowance (for children under 16)
Transition Guides
Guides for parents, young people and health professionals on transition from children’s to adult gastroenterology services, based on the national guidance prepared by a working group of patients and health professional organisations are available at www.ibdtransition.org.uk
Family Information Packs
Family Information Packs, provided by Crohn's and Colitis UK, are distributed by hospitals to families when a child is diagnosed with IBD.
Personal Grants
Families on low incomes and in financial need as a result of IBD are eligible to apply for a Personal Grant.
Other Services
Information Service. 10am to 1pm Monday to Friday. 0845 130 2233
Crohn's and Colitis Support (formerly NACC-in-Contact) Confidential telephone support line. 0845 130 3344
DLA Support Service. Book appointments through the Information Line
Other sources of information and support
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