KLS Support UK - Helping families affected by Kleine-Levin Syndrome

Q & A

Under construction, but a few essential questions and answers will be posted in the meantime

Q What information will be helpful to take to a consultation
A It is essential to keep a diary of sleep patterns and symptoms to take to consultations because a diagnosis of KLS is dependent on an accurate history of the illness and exclusion of other illnesses through tests. At the moment the diagnostic criteria need to be met for a diagnosis of KLS.

Q What do I do if I am convinced I/my child has KLS but my/our consultant disagrees?
A Send a formal letter to the consultant asking for an explanation of why they do not think KLS is the diagnosis. They will be obliged to reply to a formal letter and this will be a tactical way to bring the subject up with them. If you are not happy with their explanation you are quite within your rights to seek a second opinion elsewhere. Due to the rarity of KLS the chances are that Drs/Consultants in your area will not have come across a case before, so you may need to seek help elsewhere or if you do find a receptive medic discuss the information available on the website and in the KLS Support UK leaflet with them link. KLS Support UK may be able to help with a consultant familiar with KLS contact us.

Q Can someone with KLS apply for Disability Living Allowance (DLA)?
A Individuals who have KLS episodes where they are dependent on others for some of the time for their health and well being are entitled, and should apply for DLA. The forms demand lots of information about how frequent attacks are, how dependant individuals are on others during an episode etc. The application requires details of the individuals medical Practitioner too.

Q We are travelling abroad on holiday, will an insurance company cover a KLS patient for travel?
A KLS patients have been successfully insured through their/their parents bank. Please contact us for details of which bank. There are insurance companies dedicated to those with pre-existing conditions too but you may need to contact them early so that they can research the illness if they have not come across it before.

Q Can a student in England with KLS claim for the Disabled Students’ Allowance (DSA)
CYes, here is a link to the government website. Please take a look at the Further Education section here on this website too.

Q How do I change consultant if I am not happy with the service I am receiving?
A Ask for a referral either from your GP, or consultant. Neither should be a problem for any patient in England if they wish to change consultant in England. For patients wishing to come to England to see a consultant there will be the need to seek funding. Patients from Wales and Ireland are regularly seen in London for example - Scottish patients will need to see what the process is after the decision about independence! If it does prove difficult to obtain a referral really stress the case and the rarity of the illness. Sometimes if there is a doctor in your area with expertise in the illness they won't refer you outside that area. Persistence does pay off, keep trying. When a referral is made the case goes to the local health authority board who have to give it the go ahead so that they can fund the 'outside' referral. This should not be a problem.

Q How can I donate to KLS Support UK?
A The easiest way to donate is through mydonate.

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