Statement on Confidentiality

As a charity set up to assist sufferers of Narcolepsy, we strive to have as open as possible a dialogue with people with narcolepsy, and/or their parents, friends and family. To this end, we wish to keep these discussions, and their content, confidential.

From time to time, during these conversations, however, we may get told of facts or intentions where we could be obliged to notify various government agencies. As a consequence, there are limitations to this confidentiality.

These instances arise where we are told of something which could seriously affect the lives of others or themselves, including the risk of self-harm. In particular, this tends to be regarding the use of motor vehicles, but can conceivably occur in other instances where there is a serious risk, such as the use of heavy machinery or other high hazardous activities where there is potentially a risk to others or themselves..

A refusal to cease driving, or otherwise to notify the DVLA, or to notify vehicle insurers, is a criminal offence. Narcolepsy is a notifiable condition and a failure to cease driving upon diagnosis (until this is subsequently approved), or a failure to notify DVLA or your insurers of the condition, invalidates your insurance and may also cause the DVLA to disqualify a driver from driving more permanently.

We very much understand the difficulty that this particular legal requirement causes. However, there is the potential of a serious risk to other road users and the wider public. From the wider narcolepsy community’s perspective, the ability to continue to drive is hugely important, and will be significantly imperilled were a narcolepsy sufferer ever to cause an accident, or worse, when they were driving without a valid licence or insurance.

We also understand that often people’s initial reactions, upon being told that they have to cease driving, are often not their more considered reaction after they have had the chance to think. However, as a charity we have to consider the implications to the wider Narcolepsy community. Therefore, if we consider that there is a significant risk that someone intends to drive without a valid licence, or otherwise carry out any activity that presents a significant risk to the general public, we will not maintain confidentiality and we will inform the appropriate authority of the risks and the relevant details.

We do this, as it is both the law, but also in the interests of the wider community and those people with narcolepsy who have been through the process and, subsequently, are able to drive with the consent of the DVLA.