So, is there anything you can suggest that might help me get the DLA?

A lot of it we have already talked about; be honest, accurate and not mentioning your best or worst days but an average day. Many people don’t understand the importance of the “making food component”, which for people with narcolepsy could be critical. It is also very important to understand what the wording means and that is why we explain what key phrases and words mean.

Talking to professionals we have discovered three areas where a little bit of thought might make a significant difference. We are not talking about “key words and phrases” to use here, but certain things you could do both on and off the form that make all the difference. Here they are.

As with everything if you don’t prepare to win you must be prepared to fail. Preparation with the DLA starts before you get the form! At the end of the form is a little space for comments from people who know you. We have talked about this before but it is so important. This part of the form could be the key to getting the DLA. Having supportive evidence is crucial to the success of the DLA. If you can get the support of your doctor, consultant, care worker if you have one, that is a great start.

Many people just take the form to the doctor or consultant and ask them to fill it in.

WRONG. WRONG. WRONG.

First, after slaving over this form you really should not leave it somewhere where it could be damaged and more importantly you can’t control what is said by the healthcare professional. Secondly you probably use a busy practise and if you have a Consultant he will certainly be busy. Busy means little time available, many patients to see and of course although we like to think we are unique most patients become a blur. Who is this Mr. A? The doctor or healthcare professional will then go to his files and give a quick and basic response to the request.

Before you receive your DLA pack make an appointment with the healthcare professional of your choice. Before you see him/her write on one page of an A4 sheet the following in at least ten or twelve point typeface;
You name, contact details, NI number and practise number.
A list of the medication you are on.
How narcolepsy affects you on a daily basis.
How the condition affects your everyday life and pay particular attention to care and mobility. Add aspects listed such as: sleeping, eating/cooking, shopping, meetings, social life, travels, dangers etc
Many people have said having a small photo of you stapled in the top corner also helps. Others say it’s a hindrance.
Try to be honest and accurate and as objective as you can and keep it to the one page.

When you see your medical professional, be brief! Thank them for their support to date, explain how you are feeling now in general and then explain that you are going to apply for the DLA and would like to call on their support for a written statement if they were willing to give it. If the say yes, and they should, explain that you realise they are busy, so to help them you have completed a brief resume of how you are now.

Do explain you don’t expect this to be copied out under their name (though if you are lucky some might) but is to help them in writing a brief document. Ask that it be added to your medical file. In most cases this will mean being scanned (hence ten point minimum) and placed on your computer records. Do offer to email a copy to the surgery to help things happen quickly. Most will say no, some will say yes but at least you offered. Whatever you do, make sure they keep the letter. Explain to the doctor that rather than ask for them to fill out a form, state that you think a letter would be better, quicker for the doctor and will allow greater detail. There may be a fee for this, but don’t mention that unless the doctor does. Then you thank the doctor for his time and out you go.

Why is this important? You are no longer a name and number and you will probably be remembered in three to four weeks time. The chances are they will dig out your letter because not only will it be easy for them but not many people do this. Also if you ask for a letter rather than completing part of a form, they will probably do that very soon after the appointment and you will be fresh in their memory.

One final point on talking to your doctor before applying for the DLA. It is probable that your doctor or Consultant will be sent a “factual report” form from the people who manage the DLA. This is a form that they fill out about your care and mobility needs. Rather sneakily the form specifically requests they are not to contact you before completing the form. However if you clear all this with your doctor before he gets the form, he will have all the information he (and you) need to hand.

Even if you are not going to ask your healthcare professional for support and/or evidence, someone will. By speaking to him before the application and giving accurate information, your case could be helped.

Point two is about time and timing. To be able to claim the DLA you do not have to prove that you need constant support and attention. This has been through the courts and case law has given us some times for significant time (one hour or more and not necessarily a one hour block, but three portions of twenty minutes) whilst prolonged means more than 20 minutes (so 25 minutes is prolonged) and repeated means more than once!

When you fill in the pack, count up the number of minutes in the daytime “How long each time” boxes as you go along. If the amount of support you need goes over 60 minutes during the day then you should be eligible for the lower rate care package. The more that you accurately state the chances of increasing that care package grows. At night, just 20 minutes of care could see you awarded a DLA allowance.

Check your minutes and make a note of them and be prepared to explain them at a tribunal hearing.

The final point to make has to be about cooking. Not again you say, it’s been mentioned lots of times! Yes it has, but if it comes down to getting no grant at all and some form of grant, for someone with narcolepsy, the cooking test could be the key part of the form.

If you are unable to complete a cooked meal for yourself with the ingredients in the house, without causing substantial danger to you and or others, you are entitled to a grant. Substantial danger in this case means, the danger must be a result of the condition and must be more than a remote possibility.

With narcolepsy you might feel too tired or depressed to cook, if you have had a narcoleptic attack while cooking you could put yourself and others in danger. If you fall asleep and things boil dry or burn, if you will only handle pans with hot liquid when people are present or even if because of your narcolepsy it all takes a lot longer to cook, you are entitled to DLA. These things do happen; this is a note from a member with narcolepsy:

Using gas to cook can be very dangerous. Not only can you burn and explode food you are a danger to yourself and potentially the entire neighbourhood if you forget to turn the gas off. When I was very ill, I left it on for a whole weekend, lucky me it was summer and I slept with my windows open.

You may not get the highest level of allowance but concentrating on your problems with cooking, if you have them, could get you some sort of allowance from the DLA.