Suicidal with all of this.. 😞

Hi Oxfordjo,
I'm sorry to hear about your health struggles. Indeed, I hadn't previously heard of KLS, and having now googled this, I can see how terrible this must be for you.
Unfortunately if you want to claim PIP you will need to fill out the form, or at least get someone else to help you with this.
If I understand correctly, you applied for PIP before but missed the deadline so the claim didn't go through. OK, so if this is correct before you reapply get everything ready, then apply. (This might mean you miss out on a week or two's payments but that is better than letting the claim fail again.)
Firstly, if you haven't done so already, please have a look at the PIP guides.
As you no doubt know, PIP is awarded if you can gain sufficient points for not being able to do specific activities, or not being able to do these sufficiently well.
There are 4 criteria that need to be fulfilled- all 4 must apply.
Safety
Acceptable standard
Reasonable time
Repetition
If you can't fulfil at least one of the criteria for the majority of days this indicates that you should score points - you may need an aid or appliance, you might need physical help or you really can't do the activity. (Your correct points level will reflect the type of help you need.) You can also aggregate descriptors in the same set to achieve the majority of days if you have 2 or more different reasons/levels of disability.
In your post, you describe having episodes every 2 weeks, often lasting 5-10 days. My initial thought is that if you are on a comatose state for this amount of time you are unlikely to be able to fulfil any of the required PIP tasks for the majority of days.
I think the crux here is repetition - you need to be able to repeat the activity for as many times as reasonably required throughout the whole day. Each activity will have its own repetition rate.
Let's consider descriptor 1 for daily living - this tests whether or not you are able to prepare and cook a simple meal for yourself starting with fresh ingredients. So, it wouldn't be unreasonable for you in an ideal world to wish to cook 3 meals a day. If you are unable to make 3 meals then you can't 'repeat'- Similarly if you take medicines 10 times per day, but need some sort of help on one or two occasions, again you fail to 'repeat'.
Realistically most of the activities will require between 3 to say 10 repetitions each day. The exceptions are perhaps engaging with others (socialising) might be less than one per day, and communication is likely to be 24/7. I think if you fail to communicate reliably for a very few minutes a day, then this will be a trivial amount of time and won't fail the repetition test. For anything else one missed repetition = a score of points.
OK so you will need a couple of pieces of paper and a pen. Write down the numbers 1 to 31, or 29/30 according to the days in the month.
If you know the previous month's answers use them, if not start from today, and do a diary for a further month. ) This might be easier as a chart.
How many comatose days - ie days where you sleep and can not actually do/repeat PIP activities
Tick against each date where this occurs.
Now consider other days.
Can you do/repeat PIP activities?
Remember that if there is a risk of substantial harm, even if the occurrence if harm isn't very often, you will fail safety. If you can't perform the activity in a decent manner, this could be due to pain, fatigue, breathlessness, or maybe you are clumsy or lack grip and things just go wrong, you will fail to be an acceptable standard. Think also how long it takes- if you take more than twice the time of your non disabled friend then you fail the reasonable time criteria.
Consider each PIP activity separately.
Days you actually can't do the the task, or can't repeat. Then days where you aren't safe etc. Remember that if youare unsafe/non acceptable standard for part of the day, it is likely you can't repeat!
The failure to meet one or more of the criteria might be due to KLS or ADHD, or even due to sciatica, asthma etc etc, whatever health problem you may have, or a combination of some/all.
If eg after being comatose you need recovery time, you should factor this in. Think about whether you are eg unsteady on your feet after being asleep, so walking is dangerous perhaps your eyes are blurry so cooking would be dangerous, or you can't read a book. Consider each time you need/want to do an activity, can you do it without help, if not why, what help etc is needed. Make a comment in your diary sheet to say what happened.

I think when you read back your diary sheet it will be very apparent whether or not you can perform PIP activities unaided.
There maybe some activities that you can do with help, others may never be done.
If you can't repeat etc due simply due to being comatose and unable, , you could write against each activity something that says that due to KLS you are comatose for X days per month, and are unable to any activity for the majority of days, please see additional information. You can then send in an explanation of your condition, together with your doctor's report diagnosing KLS. What you have written in this post is very good, and wouldn't need too much editing. Include a leaflet from the KLS society. You could also reference the symptoms and confirm that you have eg 6/7 of the symptoms. Explain how you became ill/noticed something was wrong. What could you do before you were ill etc etc.
Obviously friend/husband could complete the diary. (He can also confirm in a statement what help he gives, what he sees happen when you get ill etc )
Explain if you have missed vital appointments, friend's wedding, Granny's birthday party etc due to being unawake. This is also important. Say that you may not be able to attend an assessment for the same reason.
You may wish to get medical confirmation of how your condition affects you.

Get all the answers prepared.(The PIP tests haven't changed for many years, and whilst the format of the form, and the wording may be slightly different, the information required will still be the same.)
Now you will be ready to deal with the claim.

I trust that this gives you some hope. I have no doubt given you a lot to think about. See how you get on, and please re post if you need more help. Mods and fellow members can all offer ideas. We are all thinking of you .
All the best.
LL26

Hi Oxfordjo,

I just wanted to add to LL26's wise advice.

The chances of anyone from the DWP having heard about KLS or understanding it - is very small. The NHS doesn't mention it on their website. I would collate a little information from a reputable website like - kls-support.org.uk/articles/10. You don't have to put in reams of paper - just one side of A4 should be enough - but at least then there is a chance of them understanding your symptoms.

When you complete your form = I would ask them to do a paper-based assessment. I would request it because your condition is so unpredictable - that even if you know the date of the assessment - you may not be able to participate in a telephone or video assessment. Put in an explanation of how you would not be able to give a fair account of yourself. If you have a supportive GP - see if they will give you a letter backing up your need for a paper-based assessment. Some GPs are great and some are less than helpful regarding benefits. But even if you can't get the GP letter - put the request in with the form and include a short letter from your husband who can confirm what you experience. If you have any other family members who can confirm what you go through every time you have an episode - get them to do so. Even if they refuse the paper-based assessment - you can appeal (twice) and ask them to change their mind. In your request quote from the reputable information you have included to back up your point - about what happens when you're in that state but also the aftermath - which you also cannot predict.

It's entirely up to you what you do - but please don't give up. As LL26 says - the questions are all in the guides here - so take your time to answer the questions before you apply. You can type up all your answers, and then when you get the form, just write in each question, "see attached page x"

BIS