Our security policy

In the light of recent stories about phone hacking we have been contacted by several members asking how secure our systems were and what happens to the data we request from you.

Let’s start with what’s going on at the moment. It’s not phone hacking or email hacking. It’s taping messages from someone’s voicemail, which is easy. On receiving a voicemail the mobile phone operator will send you a text message; the message usually contains the telephone number of the voice mail retrieval system and will give you the option to automatically dial that number. You can also get your messages from another phone, when you enter the phone number of the phones mailbox and enter a 4 digit pin code. If, like most of us you have not actually set a pin yourself then a default code of something like 1492 (not the real number) is preset.

It seems that the tapers have been dialling up mobile numbers of people in the news, getting through to the voicemail and then using the preset codes to access information. So, point number1, access your pin services and change it from the preset; you will be a lot more secure.

As you can see this is quite different from the way that you retrieve information from a computer. To hack a computer is not as easy as you might think with even standard PCs and laptops having quite sophisticated security systems.

In the case of Narcolepsy UK we believe that our information is as secure as we could make it, cost effectively. Only a limited number of people are able to access any data that we have and they all have enhanced CRB checks. Data can only be made available subject to a password being provided and all password IP addresses are logged. Our server is a high security unit and its live mirror is also in a secure environment.

We are bound by the Data Protection Act to store your data securely and we take this very seriously. We do not pass on your details to other sources because it’s illegal to do so and it’s not how the charity operates. We have never and would never release individual information from our membership database, surveys or forum membership to third parties. The only time we would ever do so would be if we came across serious illegal activity on the site and then we would be obliged to inform the authorities.

Apart from that I hope that all members and users of the site understand that we try our hardest to keep the site logins anonymous. A huge amount of prejudice still exists towards people with narcolepsy and many people with the condition don't want fellow workers, friends and family to know they have narcolepsy. That is your decision and we respect that and will do all we can to ensure that your information stays private.

However, the knowledge that we can gain is useful to us in deciding what to provide in terms of information and support. It also helps the charity plan for the future. It allows us to contact you if it’s very important. Sometimes we might be contacted by a Specialist and asked a question that only we can answer – how many people under 30 took longer than 5 years to be diagnosed, for instance. Here we can check our database and provide a general answer, in this case 96 but never the names of the people, just a grouping.

The more people we can get providing information, the more useful it will be in providing the services that you need. We have done our part in making secure systems and not releasing data; we hope that people with narcolepsy will feel secure in providing details to us. If you have any further questions on this please contact john.cherry@narcolepsy.org.uk