Drafting a Supporting Letter and Comments to make on the form

The claim form does provide areas where you can describe your problems with your condition, but the best way of getting this across is in a covering letter. In your own words describe the care and or mobility needs you have. While on the claim form you have limited space, here you can go into reams and reams of detail. Do try not to; if you can put it all on two to three sheets of paper that would be the best answer. If it takes more than five pages, beware that your assessors might “glaze over” and miss some important points.

It is also important to include with your letter, evidence of your diagnosis from your GP or Consultant.

The claims form also provides space for evidence from a carer or someone who knows you. The space is too small and we suggest that you add (several one page letters if you can) a supporting letter to the application and use the space to detail the number of letters and where they are – “Supporting letters from Dr X my GP, Mr Y my Consultant and Ms. Z my carer are included with this application.”

Your supporting letters must:

1. Avoid vague and unsubstantiated statements, for example “Mr A has a history of problems sleeping and needs daily help” is nowhere near as good as “Mr A (or I) was diagnosed with narcolepsy in 1999 after an extensive sleep study at BCD Hospital. He needs regular medication and support when walking, bathing and making his hot food.”
2. Always include specific references to areas of need, such as diet, medication, practical support, social contact, and help with travel or finances.
3. Emphasis the need for support and direct assistance in these areas “Due to his narcolepsy Mr A needs a carer to support him every time he uses public transport” for instance.
4. Always be definite about the results of not getting the grant. “Due to his cataplexy Mr A can, when walking on a busy road unsupported, fall to the pavement or into the traffic placing him and others in considerable danger.”
5. Whenever you think it will aid your case, quantify. “Mr A has had eleven episodes of narcoleptic sleep in the last three months while preparing his meals. In four cases this caused a minor fire in the kitchen of his house, which without the help of his carer could have had catastrophic effects on him and his neighbours.”
6. It is important to concentrate on the need for supervision, guidance and support, particularly at times of crisis and anxiety. Try to link these clearly with care and mobility needs, the two areas the DLA is supposed to support.
7. Emphasise how the allowance can have a positive effect. For example “The allowance has meant, or will mean that I can now regularly visit my family on public transport, something I could not do by myself due to my narcolepsy. This has re-established the family links and helped us all.”
8. It is important to remember that one of the key focuses of the DLA is on the claimant’s ability to interact with family and friends. This usually involves walking and travelling to familiar and unfamiliar destinations. If a claimant is unable to travel frequently without costly support this is a vital factor to mention and explain. “Without this grant I will be unable to visit my parents on a regular basis safely. This will have negative effects on my physical and psychological well being. It will also affect the psychological well being of the entire family.”
9. Mention your social life. The DLA was intended to allow people to live as normal a life as possible and social and leisure activities are part of a normal life. Any help you need with these activities can be included in a DLA claim.
   For example, if you can’t get out for a few days you start to get ‘stir crazy’ and your become depressed and anxious which can bring on cataplexy or make it worse. But you can’t go out alone because you just get far too anxious to even make it out of your front door. If when you have your partner with you, they can encourage you to go, allowing you to stay out for at least half an hour, then that should be included in the claim pack under 'Having someone with you when you are outdoors' at question 31 (at the moment).
   Again give as much detail as possible. Explain what’s gone wrong when you’ve tried to do go out alone. What difference having someone with you makes. How going out affects your mental health. If there are social and leisure activities that you do, or genuinely would do if you had the help you needed, then give in the claim pack. Being disabled, and narcolepsy is a disability, should not mean you can’t enjoy activities just like anyone else. For some claims it may not be worth it, but for others it can be vitally important. To get the middle rate for daytime attention needs, you have to show that you reasonably require help both ‘frequently’ and ’throughout the day’. Many people have no problems showing attention needs at the start and end of the day, with things like dressing, undressing and washing, but they struggle to demonstrate these attention needs in the middle of the day. That is where social and leisure activities come in. If they are things you do, or would do if you had help, during the middle of the day on at least four days a week, they should be included because they may show your entitlement to additional DLA and premiums. Squash never looked so enticing.
10. Always mention cooking! This is about question 48 on the present form. The law is quite clear, if you have problems with cooking or actually are unable to cook, that by itself allows you to have the lower rate of the care component of the DLA. As a narcoleptic, particularly if you have time when you are severely affected with the condition, cooking can be a real pain and also dangerous. For instance you could say “On many days my narcolepsy makes me too tired and disinterested to cook food. I often find it difficult to make decisions about what to cook and just give up. If I have a narcoleptic and cataplectic attack food can boil dry or even worse I can cause a fire in the kitchen. If I become affected while handling pans of hot liquid or am standing at the cooker I can cause real danger to myself and my neighbors.”

These are just some of the areas to consider when completing your form, writing your letter, or having a letter of support written. Please use your own words, these are just a guide and every individual is different.