Nottingham Support Group for Carers of Children with Eczema (NSGCCE)
Carers of children with chronic health problems can be isolated and are often not free to attend a conventional support group however we knew there was a need for providing support and information for carers of children and so we decided to use the power of the internet to reach out.
Our site now provides a great deal of information:
- There are around thirty patient information leaflets freely available on our website, which are also online streamed audio as well as downloadable documents and mp3 format.
- NSGCCE has direct links to the senior clinicians and clinical trials teams in Nottingham.
- Though unable to give specific advice, we can get very detailed answers to questions raised on the “Ask the Experts” service.
- We disseminate information via our Blog, Email Alert Service and RSS Newsfeed as well as the website. Our blog also carries real life stories submitted by ordinary people about what they did to control their eczema and documenting their struggles with the disease.
- On our website are links to publications that report on eczema related issues and where possible the site delivers video and audio podcasts made by the team and others if they relate directly to our cause.
- We have a thriving Twitter community hosted at @eczemasupport which currently has over 4000 followers, interacts with 100 people a week and makes around 400 tweets during those seven days.
- There are comprehensive links on our website, one for professionals and one for lay people.
- The site is well visited. (Visits for 118 different nations with an average of 103 visits per day).
We have found electronic media an effective way to connect with the carers, patients themselves and health care professionals. It helps us share information both ways. We are able to share in struggles to cope with the disease and we are also inspired to continue our work.