Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

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Knowledge

Hello!

This is the repository for Max Appeal's accumulated knowledge of 22qDS gained through reading research documents, UK and international publications, collaboration with our extensive medical and professional network and the wealth of experience that has been passed on to us by our members. As such it is a constantly dynamic area of our web site New materials, research, information and advice are being developed all the time and we endeavour to keep pace with these. To use 'geek' terminology; the world of 22q is a "super high speed broadband" kind of environment and Max Appeal works hard to be your "super connected 22q city"!

What is the Information Standard?

Info stan propeerThe Information Standard is a certification scheme for health and social care information. It has been established by the Department of Health to help patients and the public make informed choices about their lifestyle, their condition and their options for treatment and care. About 50,000 organisations produce health and social care information for the public in England and some people can feel overwhelmed by the volume of material and be unsure what to trust. The Information Standard has been introduced to fulfil the need for a 'quality filter' to help people decide which information is trustworthy. It provides a recognised 'quality mark' which indicates that an organisation is a reliable source of health and social care information.

Read more about the scheme on The Information Standard website.
Royal Society for Public HealthTo gain its certification, Max Appeal had to demonstrate that the systems and methods it uses to produce its material are robust and result in material that is accurate, accessible, impartial, balanced, based on evidence and well-written. Max Appeal worked with the very nice people at Capita and the Royal Society for Public Health in order to achieve certification. Our information production methods are described in our Editorial policy. User-generated information is excluded from the scope of certification, this includes comments on a page, blogs and forums as is materials not designed for the public.

A basic guide to this is that our Consensus Document, written by many interested academic and medical experts, is aimed at professionals and, as the Information Standard is designed to police the accuracy of information to members of the public, that is not contained within the Information Standard.

Our range of "Information Leaflets" contain the information drawn from the Consensus Document, which are then elaborated with background and explanatory information, and are aimed at informing and empowering our member families. This range of materials is that which we are currntly working on within the Information Standard. Our leaflets entitled "Genetics v2" and "General Paediatric Issues v2" have been through the process and bear the Inofrmation Standard logo.

There is also a range of resources that are "Advisory", which are based on acedotal evidence (user-generated) or have not been rigorously researched in medical and academic literature for accuracy, and so these are outside the Information Standard. It is our longterm goal to re-work many of these advisory materials so that they will also achieve the level of accrediation through our diligent processes to achieve the Information Standard.

We ask you to respect the copyright and not reproduce the leaflets (except for your own specific use) without the express consent of Max Appeal and please give credit as to your source.

Everyone is encouraged to read the Consensus Document, which sets the minimum standards of care you should expect within the NHS framework.

Please feel free to get in touch if you would like printed versions sent out in the post.

Information Standard Disclaimer

Max Appeal shall hold responsibility for the accuracy of the information they publish and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website on behalf of Max Appeal.

The following user-generated information is excluded from the scope of certification: weblogs, forums and personal experience pages - except where personal experience pages have been produced through a systematic process of validation

Finally...

Max Appeal welcomes input from all our "stakeholders" (it's jargon, I know!), but parents, siblings, people with 22qDS are all part of the expert community... let us know what you think of our literature and if there are areas not covered that you would like to know more about.

This web site will always be a "work in progress".