It’s that time again! Part Three of my benefits guide. The final furlong, and we’re getting info on the assessment.
13. Find out where your assessment is
This seems obvious but it’s not unusual for the things you’ve requested for your assessment to not be taken into account.
I’ve said on numerous times to numerous people that I am housebound, only to have someone try to make me go to an appointment outside of my home. (They tried, anyway.)
The first application I made (when I was still able to leave the house) stated that I couldn’t manage stairs very well, so my assessment would have to be on the ground floor.
When I received my letter the room number appeared to be quite high, so I rang the centre to ask what floor the room was on. It was two floors up, there was no lift, and the ground floor rooms were “only for wheelchair users”, which I wasn’t at the time.
In the end I explained to them that if I walked up two flights of stairs, I wouldn’t be fit to do the appointment, so I’d need a home visit. I got a note from my doctor and the home visit was arranged.
The moral of the story is make sure you check that your needs are being taken into account, and explain why an assessment will not be possible if they’re not. You might need a doctor’s note, but you are well within your rights to need certain things to make an appointment possible.
14. Polite, not friendly
When you do have your assessment there are some things to bear in mind, and the main one is this: the assessor is not your friend.
It is not your duty to entertain them, or run around after them, especially when you’re going to have to pay for it later.
Be polite, of course, but not overly friendly. It is not worth overtiring yourself to do something that will, frankly, likely harm your application rather than help it, as you'll appear to be able to comfortably do more than you really can.
It’s also okay to get upset during your assessment; it’s not an easy topic to discuss, so don’t feel embarrassed about it.
And remember, despite the horror stories around, nice assessors do exist (mine were), so don’t panic. They may not be your friend, but that doesn’t make them your enemy, so try not to get defensive if you can help it.
It’s my opinion that you should always have at least one other person with you in your assessments. I normally have both my parents.
Assessments are intimidating, and most of us suffer from cognitive dysfunction anyway, so we’re likely to forget important details, particularly when stressed.
The main reason, however, is that there are a lot of horror stories about information being ignored or altered, and it’s much, much harder for things to be ignored or altered if there is a witness with you that can back you up later.
My parents take their own notes during assessments.
If you don’t have family available, a friend, or a carer can sit in on your assessment. Just make sure it’s someone who understands your situation and isn’t liable to downplay the reality.
Another option is recording your assessment, but there are a lot of hoops to jump through to make that happen.
You have to inform them that you want to record the assessment in advance. If you don’t they can terminate the assessment (and therefore, presumably your application).
If you try to record the assessment without their knowledge and consent, they can terminate the assessment.
You can request the equipment from them but they’re under no obligation to provide it.
If you want to use your own equipment to record the assessment to make sure it’ll happen, you can only use either a double cassette tape recorder, or a double CD recorder, so both copies (one for you and one for the assessor) can be recorded at the same time with no tampering. Failure to use the correct equipment means the assessor can terminate your assessment. There's obviously the cost involved in purchasing the correct equipment.
At the beginning of an assessment you and the assessor have to sign paperwork to give consent and agreeing to their terms of how the recording can be used. I’m afraid I couldn’t find out what those terms are, but if you refuse to sign the paperwork, the assessment will not be recorded.
I’m not saying that recording is impossible, or that it won’t help keep things on track. I think it’s a brilliant idea, especially if no one is available to accompany you. However, it’s not easy to organise, so it’s something you should bear in mind when thinking about what you can physically manage.
If you're bringing your own equipment to an assessment, it's likely to be heavy and cumbersome, and if you're the one carrying it, then that's likely to count against you, even if you know you're going to pay for it later, and it’s not something you can do all the time.
A lot of assessors won’t understand how quickly you can go from just-about-functioning to completely non-functional, or how long it can take to get back from it. It’s frustrating, but it’s not exactly something new to ME/CFS sufferers, or sufferers of any fluctuating condition.
If you do decide to go that route, then you’re really going to have to drive home just how much you have to pay for your exertions.
(Edit: A brilliant piece of advice from an anonymous commenter, is to buy two identical smaller tape recorders. Apparently this was accepted in their assessment! Great tip! They suggested the one in Argos, which looks pleasingly like the recorders used in police dramas the world over.
Another comment said this wasn't accepted during their assessment, however, so it's probably best to ring and check with your local assessment centre, or the number provided on your appointment letter.
If you do, take the name of the person you speak to, and note down the date and time. If you get the all clear you can then provide them with information on exactly who gave you the go ahead if there is any pushback at a later date.)
16. They are not assessing whether you are ill
Your assessors are not (or should not) be assessing whether you are really ill, or whether you have the symptoms you say you have.
The evidence supplied by your medical professionals is to do this. (And if you don't think your notes reflect this afterwards, then you're well within your rights to appeal.)
Assessors are meant to read your form and medical evidence before your assessment, so what they are assessing (as the format of the form's questions would suggest) is how your condition affects your ability to function in everyday life. Again, whether you can do things in a reliable, safe, repeatable and timely manner.
So when you talk to them, explain how things affect you, and the level of post exertional malaise/Payback you experience, and use the terms above.
PEM and fatigue are recognised symptoms of ME/CFS, so that fact that you will experience it shouldn't be questioned, although you may need to give a explanation of your symptoms to the assessor, if they haven’t read all your information.
Explain exactly how badly they effect you, and the steps you have to take to avoid Payback as much as possible and keep yourself safe.
Talk about how a bad day looks, and how a better day looks, if you have them. Make sure you explain that your better day, is not a healthy person’s good day.
Make sure you explain if you can only do things in select circumstances, or with aids, like my hot chocolate example in part two, point 8.
It's basically reiterating your form answers. Feel free to keep a copy of them with you for the assessment if it makes you more comfortable.
17. Medical Assessments
Part of assessments can be a physical examination. You are well within your rights to stop and say if something the assessor asks you to do is hurting you, making you breathless, you can't do it, or it's tiring you too much.
If you know you can’t complete a task you can also just say so, and state the reason why.
PEM is a recognised symptom, so do not feel forced to do something if it's going to damage your health.
The point of a medical assessment is not to make your condition worse.
In the event that you do not get the level of benefit you think you should, you have to right to appeal. I don’t have a massive amount of experience in this, but I’ll give you the information I’ve collected, and links to other places to find more.
First you can contact the DWP to ask for a Mandatory Reconsideration, using the information on your letter from the DWP with the first result of your claim. You have one month to do this.
The DWP look at the form you originally sent, your evidence, and the assessment notes and reassess. They’ll send you two copies of a letter with their decision.
If they still haven’t given you the benefit you feel you’re entitled to, then you can ask for a tribunal to be held. You have one month to request this, and you’ll need the second copy of the letter they sent.
They’ll send information on why they came to the decision they did if you decide to take it further, but all the advice online says not to be put off by the size of it. Gather as much evidence as possible and prepare for the tribunal.
The ME Association states that generally tribunals go better if the claimant attends them, so if you’re able to, then go. Again, I’d suggest taking someone with you to help, and for moral support.
If you’re not able to go, then you’ll have to make a decision on what to do. As I’m housebound, it would do my health far too much damage to risk going to the tribunal myself, so I would have to ask my parents to attend in my place. I’m not willing to hurt myself like that.
I think it’s really dependent on people’s situations, but at the very least, if you’re not able to go in person, I would suggest you write a statement to be read on your behalf at the tribunal, explaining why your health doesn’t permit you to attend, and why you think the decision you’ve been given is wrong.
As I mentioned in the first section, there are some excellent guides available online, both free and for a small fee.
The following have sections or help on appeals:
The ME Association
Citizen’s Advice Bureau
Disability Rights UK
Benefits and Work
Fightback 4 Justice
M.E. & Chronic Illness Benefits Advice Group
Scope (search "appeal")
Kitty Jones' blog post
And that… is that! Phew!! You’ve finally finished! Thanks for sticking with me, and I hope you found it helpful! If you have any tips then feel free to leave them in the comments.
(I would ask, however, that you try and keep any comments positive. If people have come here, then it’s likely because they’re nervous, and so let’s keep it to useful, constructive suggestions.)
Good luck with your applications, everyone. And keep your chin up. You’re not alone, and you’re stronger than you think.