Monday, 30 January 2017

Top Tips for Benefits Applicants: Part Two


Hello again! Part Two of three of my benefits guide, and we’re still filling in that form. Let’s get this party started.

7. Consequences, physical, social AND emotional

The bulk of the questions on the benefit forms aren’t actually about the symptoms you suffer (although a list of them is a good thing to include. Depending on the benefit you’re applying for, there’s usually a question at the beginning asking about your symptoms).
The medical evidence you provide is meant to be the part that proves the existence of the illness, the questions will focus on exactly how those symptoms affect your life. The consequences of the symptoms, not just the symptoms themselves. Also, the consequences (or side effects) of the medication you take to manage your condition.

If you were to talk about fatigue, for example, you could give a general explanation that ME/CFS fatigue doesn’t go away like regular fatigue, and that it’s worse than a non-sickie’s fatigue at the beginning, but then the rest of the answers would be expected to reflect what that means for you. So, "my fatigue means I struggle doing x, and can’t do y, and z at all. My fatigue means I can’t see people socially because I get too tired etc."

Also, when thinking about the consequences your ME/CFS has, don’t forget to include the physical, the social and the emotional. I mentioned before that you’re illness might make you feel depressed or isolated, it might make you feel useless, or pathetic or worthless; those aren’t physical consequences, but they are consequences, and are every bit as important as the other more obvious effects of the illness.

(I’d like to point out that you’re absolutely not useless, pathetic or worthless. You’re sick, not lazy, but I know that it’s easy to feel those feelings when you’re not able to do the things you once did, and if you do, you need to mention it on your form.)

Do you spend less time with people? Does it make you anxious when you do spend time with them? Isolation and anxiety are both things that need to be listed.
Think about all the little changes you’ve made to your behaviour or routine to compensate for being ill. Those are all important consequences that you might not think of.

Something that might help is to write a list of symptoms on a separate piece of paper and hold it against the questions as you go, so you can compare how each one affects what they’re asking about at the time.

I think this rule is why you see a lot of examples where people with really obvious disabilities, like limbs missing, get taken off benefits. They assume (quite rightly) that the fact their disability affects their life negatively is obvious, and so don’t go into depth about how it affects their life, all the little changes they’ve had to make to accommodate their disability. 

The truth is, in our current system, there are hoops to jump through, and you need to make sure you’re jumping through the right ones to get the help you need. It sucks, but it’s unlikely to change anytime soon. All we can do, for now, is try and answer the questions so that the decision makers understand enough to tick the right boxes.
Let’s get you the things you’re entitled to, and then we can fight the good fight when we know you’re getting the support you need.

8. Safely, reliably, repeatedly 

The ME Association consider this the most important thing to remember, by far, so take note; the questions, and assessors, assess the impact of your illness in terms of whether you can do things reliably.
That means finding out if you can do things "safely, repeatedly and in a reasonable time”, and also whether you can do those things to an acceptable standard.

For a condition like ME/CS this is incredibly important for two reasons. Firstly, our illness often delays it’s consequences in the form of Post-Exertional Malaise (or Payback), so what might appear safe to an outside viewer isn’t always true (important in medical assessments), and secondly, our condition fluctuates, so we can’t always know whether we’re going to be able to do something or not until that moment. 

Our condition makes us pretty unreliable in lots of ways for that very reason.

I could say that I can make a cup of hot chocolate for myself, for example. However, I can’t always make a hot chocolate because I don’t always have the energy. On good days, yes, maybe, but not always. On bad days? Not a chance. I can’t do it reliably. 

I can’t manage to make more than one hot drink a day (because of fatigue), and it also takes me far longer than it would a well person to make even on good days, because I have to go and lie down while the microwave heats the milk because I can’t stand up for that long (fatigue, blood pressure problems, muscle weakness), or stand the whirring of the microwave (noise sensitivity). 
If I try and push myself on a bad day to do it because I’m thirsty and cold and my parents aren’t around it could easily become dangerous if I have an energy crash and trigger an emergency shutdown.

If an activity causes you to become breathless or triggers pain, you can’t do it reliably, because you can’t do it safely.

Motivation is also a key factor. If your condition means you lack the motivation to do something, for example if your ME/CFS has also made you depressed (for which a lack of motivation is a key symptom), that counts as not being able do it reliably.

When you answer your questions, you need to think in terms of whether you can do the things they’re asking about reliably, safely, repeatedly and in a reasonable time. Answer accordingly, and specify on each answer as if that's included in every question.
(This is another thing you could have on a separate piece of paper and put next to each question when you have the form.)

Here’s a transcript of the House of Lord’s debate where Lord Freud (DWP government minister) used the safely, repeatedly, and reliably terminology, for reference. 

9. Fill in as your worst days

There is some debate about whether you should try to give a general overview, or focus on the fluctuations of good days and bad days when filling in your forms. All I can tell you is my personal opinion, and I think that the discussion of good days and bad days does give a general overview, provided you explain what level those good days and bad days mean. 

After all, our good days are not like other people’s good days, so we need to explain that so that assessors know what we mean when we use that phrase.
If you don’t like using the phrase “good days”, try using “better days” instead.

You can discuss with a healthcare professional how they’d rate your activity level as compared to a healthy person your age, both for good days and bad days. This will give you a bracket to help explain your activity level to your assessors. They can then help you work out what percentage of your days are good days or bad days.

For my last form, my Specialist Physiotherapist wrote a letter as evidence to explain my activity level as compared to a healthy woman my age (5% on bad days, 10% on good days, which I still think is a little generous, I rarely go past 8% even on great days), and the number of days in a week that would be described as bad or good.

You can work out a rough estimate yourself by looking at an activity you had done before you got sick, working out how long that took you, and then working out how long it’s taken since you got sick (don’t forget to include the time it takes to recover from the activity), and comparing them.
For example it took me sixteen weeks to reread the Harry Potter series, when it would’ve taken me a week before I got sick, so sixteen times as long. One hundred divided by sixteen, is 6.25. 

My average activity level is therefore approximately 6.25% that of my healthy self.

In terms of the form, if your condition fluctuates, and the worst case scenario happens more than 50% of the time, you’re scored on the worse situation, but you need to put both in for clarity’s sake, even if the difference in minimal. Leaving out good days entirely is essentially a lie of omission and that is a very bad idea. 

However, you do need make sure they know just how bad a bad day is, so there’s no problem focusing on that, and then letting them know what a good day looks like after.

When filling in my form I focused more on the bad days (because, as I said before, the assessors need to know how bad it gets), but also said what the good day equivalent would be. So, as in the hot drinks example above, I would say that on bad days I can’t make myself a hot drink, and the reasons why, but say that I can sometimes make one a day, on better days, and the extra steps I have to take to make that happen.

10. Make copies

I know I’ve mentioned already that making copies of evidence is a good idea, but it’s worth saying again. You also should make a copy of your completed forms before sending them in. This is for several reasons: 

A. If the form goes missing you can easily send another (this is doubly true for any evidence that may go missing) 

B. You can take a copy to refer to to any assessments you have (and leave a copy of this or evidence if they don’t have them, or they have gone missing)

C. If you do need to appeal, you’ll have more copies to send and to take with you to tribunal as evidence that you’ve told them about your situation adequately (and again, evidence to leave if they haven’t seen it for whatever reason)

D. If you need to inform the DWP about a change in your circumstances (hopefully for the better!) then it’s an awful lot easier to use your previous filled-in application as a template and just change the necessary information in the new form. It’s so much effort doing it the first time, you might as well use what’s still relevant from the old form and save yourself some energy.

I know someone who actually types their answers and then prints and sticks their answers into the form because they find typing and typed fonts so much easier deal with. It's also easier for them to reuse for the next time. Not a bad idea, but just be wary of getting the form stuck together!!

11. Recorded delivery

If you can afford it, I’d recommend sending completed forms that have a time limit via recorded delivery, so you know they have reached the DWP within the time limit.
It’ll be a load of your mind, and, if you keep the receipt, you can prove that it reached them on time if you have to.

12. Get an assessment to suit you

On the forms for benefits that require a medical assessment, they’ll ask if there’s anything you need to make that possible. Medical assessments are pretty nerve-racking, so mention anything that you can think of to make things easier for you. It’s tiring enough in the first place without adding unnecessary strains, and these assessments aren’t meant to make your symptoms worse.

Things to think about would be:

Does the assessor need to avoid wearing loud patterns or strong perfumes to avoid triggering your brain fog?

Do they need to speak quietly to help with your noise sensitivity?

Will you need someone with you as moral support, to take over speaking if you get tired, and to take notes? (I would recommend this, and I’ll say why in more detail later)

Will you want to record the assessment? (This is possible, but there are provisos that I’ll go into later.)

Do they need to organise a place for your assessment on a ground floor, with wheelchair access, or with a lack of stairs?

Do you need a certain type of chair to sit on?

Will you need a home visit, because of fatigue, physical weakness or anxiety?

Do you need to be able to go right into the appointment rather than waiting in a waiting room?

Even if these things don't get taken into account on the day, you are entitled to ask, and from the perspective of any outside assessors that might need to look into your case, it's better if you've been seen to ask for what you need.

Do not agree to an assessment that will damage your health. You are entitled to a home visit, although you may need your doctor to write a letter stating that attending an assessment elsewhere is detrimental to your health.
(It’s my personal opinion that anyone with ME should have a home visit: our condition comprises of constant exhaustion which is greatly worsened by activity, so frankly it makes no sense to wear yourself out when the assessor can come to you and suffer no ill effects.)

End of Part Two! Check your spoons, and continue to Part Three!

1 comment:

  1. I actually went with three-part answers to explain how badly I'm affected. For example:
    Prior to [date], I regularly participated in 10-mile charity walks. On bad days, I can make it to the corner store, but have to sit on the floor for 10 minutes before I can make it home, and then have to sit on the bottom step for another 10 minutes until I can make it up the stairs. On a good day, I can walk to a store 6 blocks away, but have to sit at the restaurant next door long enough to eat lunch before I can make it home; I need to eat lunch there because I will not be able to fix lunch when I get home; I need to spend the next 4 hours lying down.