Finding information on the internet

Links to useful sites for subjects such DLA, benefits, allowances, and concessions, general disability issues, housing and travel. This section of the forum is READ ONLY. If you know of a site or resource you think should be in this section of the site, please contact one of the Administrators or Moderators and let us know.

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This section of the forum is provided as a resource for information regarding many aspects of illness, disability, and health issues, as well as advice services, benefits information, and other aspects of life that having IIH and disability can impact upon.

Many of the links and organisations listed in this section of the forum refer to "disability". Not everyone who has IIH will be classified as disabled - under the DDA (Disability Discrimination Act) a disabled person is defined as "someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities". Equally, some people who do meet the DDA's definition of disability may not be comfortable with being described as disabled. We use the word "disability" here, except where the word disability has a specific meaning, such as in relation to the DDA, as a shorthand for "disabilities and long term health conditions" - it's a lot quicker to type 'disability' or 'disablities' rather than "disabilities and long term health conditions" every time!

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As the majority of our members are from the UK, most of the information in this section is UK based, and about UK welfare benefits, advice services etc. We recognise though that we do get visitors here and indeed have members from all over the world. If you're not UK based, and you have links specific to your own country that you think would benefit others, please do let us know and we're happy to post links for other countries if you feel they would help others. Please do let us know if you have any links you'd like to share by contacting one of our Administrators or Moderators.

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Joined: Fri Feb 17, 2017 9:04 am

Finding information on the internet

Post by iih » Fri Feb 24, 2017 3:24 pm

The internet is a fantastic resource for finding information on all sorts of topics, including health, and health conditions. It can provide answers to the questions you forgot to ask your doctor, help you to understand your condition, and help to you feel less isolated, but, like the old saying goes, “Don’t believe everything you read!”.

Here are some tips to help you to make a judgement about information you may find on the internet.

1.Who has written the information? What are their qualifications? Are they a member of a professional association?

2.Does the organisation they claim to belong to actually exist? Just because information isn’t written by a medical professional doesn’t mean it isn’t useful, but consider who has written the information and why. Many sites provide information from people with first-hand experience of the condition – the patients themselves. While information from other patients is often valuable, remember that usually they will have no medical qualifications, and you should check the accuracy of information before acting on it.

3.What is the aim of the site? Is it providing information to educate, or are they trying to sell you something?

4.Can the information be checked? Is there research available to back up their claims and opinions? The internet isn’t regulated in the same was as say TV and newspapers are. Is the author of the site who they say they are? Do other sites and sources of information give similar information? Never change, stop or start a treatment you have read about on the internet without first checking with your doctor.

5.Does the site tell you about other treatment options? If it doesn’t, there may be a reason for it only giving information on one aspect of the condition or treatment.

6.Is the information biased? Why has the author created the site?

7.Is the information relevant to you? Does it answer the questions you want answers to? Is the information actually about your condition?

8.Who is the information aimed at? Is it aimed at patients and the general public or medical professionals? Information aimed at medical professionals may be much more in depth and contain information and terms that you don’t understand, things that can worry you more rather than answer your concerns.

9.When was the site created? When was it last updated? Looking at when a site was created and when it was last updated can help you to decide if the information it gives is up-to-date. Often information on when the site was last updated can be found at the very bottom of the page. if information on a website hasn’t been updated recently, it doesn’t necessarily mean that it is of no use, but you should check if there is more up to date information available elsewhere.


It’s easy to use a search engine to find information on symptoms you have or a condition you have been diagnosed with. It’s also very easy to terrify yourself when you read what symptoms can indicate or the prognosis for a particular condition. While the internet can be a very useful resource, there is no substitute for a diagnosis and proper treatment plan by a qualified medical professional.

Don’t be surprised if your doctor doesn’t jump for joy at the information you’ve carefully printed from the internet and taken along to your next meeting. Your doctor has had many years training and is medically qualified. Good doctors keep up to date with the latest medical developments and research, and they’ve probably already heard of much of the information you find on the internet.

There’s a good reason why your doctor has prescribed the course of treatment they have. By all means share information you’ve found on the internet with your doctor, but don’t expect your them to act on it without doing some careful research themselves.

Used sensibility the internet is wonderful for finding out information, but bear in mind the points above.


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