In November we held the last of this year’s successful CICRA IBD Family Days in Southampton having visited, Newcastle, London Docklands and Aberdeen earlier in the year. These days are an opportunity for children, young people, families and friends to meet one another and to not only learn from the Crohn’s and Colitis experts, but also to join together and make new friends. Separate afternoon programmes are available for parents and friendly informal sessions for children and young people, whilst entertainment is provided for the really young.
Looking ahead to 2016 we are planning for similar days on Saturday 5th March in Cardiff, South Wales, with a visit to the Manchester area in June and East Anglia in the autumn (yet to be confirmed). For more information please contact firstname.lastname@example.org or phone 020 8949 6209.
We hope you enjoy reading some of the views of parents, young CICRA members and IBD Nurses:
Julie, Mum to George age 16, diagnosed with Crohn’s aged 13:
Our son, George, had been ill for several years and was eventually diagnosed with Crohn’s disease at the age of thirteen, just over three years ago. Our first reaction was one of relief, at last we knew what was wrong. Confusion followed, as we soon realised that we didn’t know anything about the condition. Next was frustration, when we realised that there is no cure and at best he would be controlling the condition for the rest of his life. … To read more click here.
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For our family having the support of a charity like CICRA has been immeasurable.
The family days that CICRA organise really give you a boost and listening to other family’s experiences makes you feel that you are not alone. The courage these kids display when sharing their IBD story really inspires the kids and helps them stay positive. …
Katy (Daughter – aged 17, suffers with Crohn’s Disease)
CICRA has done loads to support kids with IBD. I love the family days they organise as it gives me an opportunity to meet other kids going through the same or similar struggles as me. I have made loads of friends there and we all keep in touch after the meetings through a group chat on Facebook. It’s really inspiring listening to other people’s stories with IBD and it is very encouraging and gives everyone else hope. … To read more of Gaynor & Katy’s views click here .
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Cally, Mum to James age 11, diagnosed with Crohn’s aged 10.
CICRA is an amazing charity, which achieves a huge amount, particularly considering its small size.
Anybody who has had a sick child will know how depend upon and grateful to the doctors you become. With these lifelong IBD conditions, our children rely upon good ongoing interaction between patients’ families and their doctors. This is where CICRA plays such an important role: through the family information days … To read more click here.
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Here are the views of a young CICRA member:
Hi my name is Anna, I am 14 years old. Being a member of CICRA has helped me develop new friendships with other young people going through similar worries as me through the E-Pals facility. Earlier this year I attended a family day in London which was really fun as it gave me the opportunity to meet other families. CICRA has really helped me in feeling not so alone with my illness and always knowing there’s someone to talk to who understands.
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Here are the views of two IBD Nurses about our Family Days, Parent packs & literature:
The IBD Family Information Days run by CICRA offer teenagers and young adults the opportunity to get together and discuss their condition and its impact on their lives. The afternoon sessions provide open forums that enables participation and encourages discussion on agendas set by the teenagers themselves. The start of the day comprises of talks from professionals involved in the IBD service provision and the much more popular patient life journey stories where individuals talk about their condition and personal achievements. These stories offer hope and encouragement to others.
The day brings different families together through a shared disease diagnosis and facilitates education, support and the formation of friendships that help in the management of the IBD condition.
Parent packs and literature:
As Nurse Specialists, an important part of our role is supporting the child and family at the point of diagnosis. This is often a difficult time, when the child feels unwell and the family have to deal with a life-altering, chronic diagnosis. The parent packs provide easy-to-read information in bite-sized chunks, and therefore do not overwhelm families with information all in one go. We often refer to the parent guide which has clear diagrams, aiding in our discussions about the location of the disease and severity. The glossary of terms is a useful resource also. The pack directs patients and their families to relevant support groups and offers a newsletter full of patient stories, research developments and information about forthcoming events which offer a chance to meet other families and learn more about the disease. The information provided by CICRA is a fantastic resource for patients and families, providing education and support in equal measure.