Filling in the ESA50

When you apply for ESA you will eventually be sent the ESA50 form (unless you fall under the special circumstances). Most people find the ESA50's arrival very stressful. The fact that it has a time limit on returning it, makes it even worse. Most conditions only require someone to fill in a few sections on the form, but people with M.E. have something to enter in many sections, which is one of the reasons we tend to need more help.

Having help through the process makes it a lot less stressful. Make sure you pick the right person to help you though. A friend of family member is probably not the right person, unless they understand how the DWP operates and what a Decision Maker will be looking for. There are a number of organisations who may be able to help you. A few such organisations include:

• The Citizens Advice Bureau
• DIAL
• Mind - The Mental Health Charity
• the Civil Legal Aid Agency

You can also join our group on Facebook. We've helped a number of people who have M.E. with their ESA50 forms. We offer help filling in the form to people with M.E. and similar conditions, and will check through your form when you have filled it in to look for anything obvious that might go against you.

I suggest going through the guide below first, as it is exactly what I'll be suggesting on the group. If you find it helps, a comment is always appreciated.

One of the most important parts of your ESA application is the supporting evidence. So, my advise is that when you start considering applying for ESA, you actually put in place as much supporting evidence as you can first.

Once you have the form, don't let it panic you. Panic and stress affect your cognitive abilities, so deep breaths. You will have been given four weeks to return it. It essentially has 20 sections. So, theoretically you can take it one section a day, and still return it in time. The wa8 days spaced apart) without too much stress.

I recommend completing the form on a computer, so that you can amend any errors. If you choose, you can complete the actual form they sent you by hand afterwards.

I have three rules:

1. Don't be afraid to be totally honest. Most people, particularly people with M.E., have either got so used to playing down the things they suffer from, or have been ill for so long that they've forgotten what normal was, that it can become quite emotional to fill in this form.
2. Give yourself breaks, in which you reward yourself somehow. Letting this process make your health worse is a big no no.
3. Start the working on the form as soon as you get it. The longer you leave it, the more stressful it becomes.

Download the PDF version of the form here so that you can fill it in on your computer.
 

First Session

1) Fill in:

• your personal details.
• if you do not want the DWP to phone you do not put your phone numbers on the form. (Personally I advise leaving it off).
• any dates you cannot make an appointment.
• the details for your doctors, and specialists. Your doctors surgery should be able to provide you with details of specialists if you're uncertain of them. If you've more than one specialist (most people with M.E. do), add the information of the other specialists on another page.
• at the back of the form on page 10 fill in any details about any cancer treatment you're receiving.

2) At the end of page 3 there is a box which asks if there is any help you need for the face to face assessment. Unless anything obvious springs immediately to mind, scroll past this for now. It is usually easiest to fill this in as you go through the other questions; they tend to stimulate ideas. We will come back to it later anyway.

3) Also scoot past the big box on page 5 asking about your illness or disabilities.

4) Completing the section about your medication shouldn't be a problem. Remember to include anything you take regularly that is not prescribed by your GP (vitamins, minerals, herbal remedies, etc).

5) Completing the section about hospital, clinic or special treatment, also should not be a problem. Treat it as a table, for example:
Counselling with MIND - for severe anxiety and PTSD - one hour - every two weeks
Physiotherapy (Solihull Hospital) - for the problems with my hypermobility - 40 minutes - once a week
Osteopathy (Burntwood Osteopathic Clinic) - for back pain - half hour - as needed

Include any up coming appointments you have that could lead to further treatment. For example:
I'm awaiting appointments with the balance clinic, and a date for an MRI of my head and spine.

6) If any of your problems are due to drugs, alcohol, or other substances, do fill that section in. Don't be mistaken though, this section is referring to MISUSE only. Side effects from medications your GP or specialists have given you, do not go in this section.

 

Second Session

We're going to go through all the questions in the Physical Functions section. That isn't as scary as it sounds. We're looking at the text boxes that accompany each question.

Before embarking on this task you need to decide whether you are going to fill in the form according to your average days, or your worst days. Personally I recommend filling it in according to your worst days. We will cover this better later, but you need to make the decision in order to know how you're going to answer these questions.

What I'm going to instruct you to do is described more fully in this blog post.

For each question, consider these things carefully:

• severe discomfort.
• pain.
• breathlessness.
• extreme fatigue.
• repeatability.
• reliability.
• safety.

If you can do the activity, does it cause you discomfort, or severe discomfort?
If you can do the activity, does it cause you pain?
If you can do the activity, does it make you breathless?
If you can do the activity, does it cause you fatigue or extreme fatigue?

If you can do the activity, how often / soon can you repeat it?
If you can do the activity, can you do it to a reliable level?
If you can do the activity, can you do it safely?


Some examples of how to use the above points:

• I cannot walk 50 metres repeatedly or safely, without undue discomfort, pain, and extreme fatigue.
• I cannot remain stationary, standing in one place, for more than 40 seconds, without severe discomfort, pain, and extreme fatigue, reliably, repeatedly, or safely, due to Postural Tachycardia Syndrome.
• At times I can raise both arms, but most often it is with severe discomfort and pain, often causing extreme fatigue. I cannot ever raise both arms repeatedly, or reliably.

Third Session

Now we'll go back through those questions, one by one, and see if we can add any more personalising information to each question. If you have a recent example you can use, it can help to use that too. Don't feel you are restricted to my guidelines; if something occurs to you that is outside my suggestions, do make note of it.

Try and keep it all concise; remember, the Decision Maker has less than half an hour to look through your case.

1. Moving around and using steps
State whether:

• you use a wheelchair, or walking aid.
• you have any physical problems with your hips, legs, knees, ankles, or feet.
• you suffer from pain or discomfort in your legs.
• you know why you suffer from that pain or discomfort.
• you have problems with walking, for example, you stumble or fall, or have balance problems.

The answer from my form:
"I use a wheelchair for long outings, and a walking stick for shorter walks. I have Hypermobility that affects my hips and knees with a lot of pain. Fibromyalgia and sciatica also cause pain in my leg muscles. I can never walk any distance without significant pain and discomfort. I suffer ticks that cause me to stumble and fall, sometimes as frequently as once a minute (I'm soon having an MRI to pinpoint the cause of these ticks)."


1. Going up or down two steps
State whether:

• you use a wheelchair, or walking aid.
• you have any physical problems with your hips, legs, knees, ankles, or feet.
• you suffer from pain or discomfort in your legs.
• you know why you suffer from that pain or discomfort.
• you have problems with walking, for example, you stumble or fall, or have balance problems.

Yep, I'm asking you to repeat things. (The more a Decision Maker sees it, the more likely it is to sink in).

My example:
"When I use a wheelchair I cannot use steps or stairs at all. When I walk with the stick I also need a banister to help me use steps. I have hypermobility that affects my knees, making it very painful for me to use steps. In my home I usually crawl slowly up stairs, and come down slowly on my bottom, because of the risk of me falling. My most recent fall down the stairs was three weeks ago. I have an appointment with an Occupational Health Therapist whom I'm hoping will be able to provide me with some aids."


2. Standing and Sitting
State whether:

• you use a wheelchair, or aid for remaining in a stationary position.
• you have any physical problems with your hips, legs, knees, ankles, feet, or lower back - even your arms if relevant.
• you suffer from pain or discomfort in your legs or lower back.
• you know why you suffer from that pain or discomfort.

My example:
"I suffer discomfort remaining in a stationary position, which at times can cause me to pass out (I recently passed out in the post office queue) I can never remain standing in a stationary position for more than 30 seconds without experiencing this discomfort. The stick I walk with has a seat on it, so that I can avoid standing in queues. (I am waiting for an appointment at the Balance Clinic to test whether I have Postural Tachycardia Syndrome). This problem also means I need to have my feet raised when sitting, though I can sit for a few minutes being affected.

I also suffer with lower back pain (you have an MRI from 2002 showing a disc bulge and arthritis around L4 and L5). This again causes problems with standing, but it also causes problems with sitting; I need to shift my seated position every 15 minutes due to severe pain."


3. Reaching
State whether:

• you use any aids for reaching.
• you have any physical adaptations for reaching.
• reaching can cause you discomfort or pain.
• you know why you suffer from that pain or discomfort.

Consider both reaching out in front of you, and reaching up above you.

My example:
"I have two problems raising my arms. The probable Postural Tachycardia Syndrome causes me to become light headed when I raise either arm. Upper back pain and neck pain, caused by my back problems, are exacerbated by extreme movement of my arms."


4. Picking up and moving things
State whether:

• you have problems holding your arms up to the sides.
• you have problems with coordination.
• having problems with reaching affects your ability to pick up and move things.
• you are limited in the amount of weight you can lift.
• why you suffer that limitation, if you know why.

My example:
"I would struggle to lift both arms to lift the box in the example, because of the probably Postural Tachycardia Syndrome causing me to become light headed when I raise either arm. On my very worst days extreme fatigue affects my ability to lift objects."


5 Manual Dexterity (using your hands)
State whether:

• you have any physical problems with your hands and/or fingers.
• you suffer from pain or discomfort in your hands and/or fingers.
• you know why you suffer from that pain or discomfort.

My example:
"Due to Fibromyalgia I suffer agonising pain in my fingers and hands, approximately one in four days, therefore have problems pressing buttons, picking up objects, typing, using a computer mouse. I have Carpel Tunnel Syndrome in both hands which causes shooting pains in my hands. The injection to treat Carpel Tunnel has cause further problems when any pressure is placed on the thumb of my right hand."


6. Communicating with people
State whether:

• you have difficulties with speech.
• you have difficulties holding a pen, or writing.
• you have difficulties typing on a keyboard.
• you know what causes those difficulties.
• you have cognitive difficulties that affect your ability to construct sentences.

My example:
"Fatigue often causes my words to become confused and muddled up, and my speech to be slurred. This causes problems with conveying messages. People often assume I'm drunk."


7. Other people communicating with you
State whether:

• you have a problem hearing.
• why you have that problem, if you know.
• you have a problem with your sight that affects your ability to lipread (if you've a problem with hearing).
• you have problems reading.
• you have a cognitive problem that affects your ability to understand people.

My example:
"I suffer from constant tinnitus that fluctuates in volume depending upon how fatigued I am. Fatigue affects my ability to follow conversation. I also suffer a lot of sensitivity to sound that causes significant headaches, as I wear earplugs - which of course then means I cannot hear people speaking at a normal volume."


8. Getting around safely
State whether:

• you have a problem with your sight.
• you have a guide dog, or need a person to guide you.
• you wear glasses or use contact lenses.
• you have a cognitive problem that affects how you understand what you see.

I don't have a personal example for this, but for the sake of argument:
"I have tunnel vision which affects my ability to judge what is happening in my surroundings. This causes me problems with tasks such as crossing the road, and means that I cannot drive."


9. Controlling your bowels and bladder and using a collective device
State whether:

• you suffer urinary incontinence during the day.
• you suffer urinary incontinence during the night.
• you suffer fecal incontinence during the day.
• you suffer fecal incontinence during the night.
• you use incontinence pads or something similar.
• you use a collecting device.
• you have problems getting to the bathroom in time at night.
• you have a colostomy, an ileostomy, or a urostomy.
• you have problems getting to the bathroom in time at all.
• you have to discard clothing because of these problems.
• the frequency with which you need to discard clothing.

I also suggest:

• you suffer with irregular heavy periods.

My example:
"I suffer IBS. During the loose stool phase I often have accidents. During the constipation phase I use Movicol, which causes extremely loose stool, and again, I often have accidents. I also suffer with very irregular heavy periods, which make a big mess when they arrive; I'm usually unaware that it has happened until someone brings my attention to stains on my clothing. I usually need to discard at least one pair of underwear per month."

What they're actually looking for in this one is whether you need to discard clothing due to the severity of the incontinence (hence my suggestion of periods).


10. Staying conscious when awake
(This is where you explain about brain fog).
State whether:

• you pass out.
• you black out.
• you have fits.
• you suffer Diabetic hypos.
• you remain conscious but lose awareness.
• you fall asleep unpredictably.
• you know what causes the above.
• you know how regular these are.
• you suffer from brain fog (cognitive dysfunction) - and describe it if you do, as it isn't a particularly well recognised or understood symptom.

My example:
"Due to probably Postural Tachycardia Syndrome I pass out any time I have to remain standing in a stationary position. This also happens when sitting without my legs raised, though is less frequent. I have severe anxiety attacks, during which I lose awareness, often regaining awareness in unusual places and covered in self inflicted wounds. The severe fatigue caused by M.E. affects my ability to think and function to a degree that I am completely unsafe to be left alone."

Fourth Session

Now that you've filled in the text boxes for the first set of questions it should be fairly quick and easy to go through the tick boxes without dilemma over what the right answers are for you. Don't over estimate your abilities, but make sure any negative answers are explained in text.

Try to avoid ticking "it varies". I have been informed, though how reliable the source was I'm unsure, that ticking "it varies" automatically scores you zero for that section. If you're filling in the text sections as per your worst day, remember to tick the boxes in conjunction with your worst days also.

 

Fifth Session

We're now going to do pretty much the same for the Mental, cognitive and intellectual functions section, first looking at the text boxes that accompany each question first.

For each question, consider these things carefully:

• variability
• repeatability.
• reliability.
• safety.
• severe discomfort.
• pain.
• breathlessness.
• extreme fatigue.

If you can do the activity, does your ability to do it vary.
If you can do the activity, how often / soon can you repeat it?
If you can do the activity, can you do it to a reliable level?
If you can do the activity, can you do it safely?

If you can do the activity, does it cause you discomfort, or severe discomfort?
If you can do the activity, does it cause you pain?
If you can do the activity, does it make you breathless?
If you can do the activity, does it cause you fatigue or extreme fatigue?

Some examples of how to use the above points:

• I can not repeatedly learn how to do tasks, due to extreme cognitive fatigue.
• I can not reliably finish tasks I start, due to extreme fatigue.
• I can not cope reliably or repeatedly cope with varying types of change.
• I can reliably or repeatedly behave appropriately with other people. Social interaction causes me severe fatigue.

Sixth Session

Now we'll go back through those questions, one by one, and see if we can add any more personal information to each question. If you have a recent example you can use, it can help to use that too. Don't feel you are restricted to my guidelines; if something occurs to you that is outside my suggestions, do make note of it.

11. Learning how to do tasks
State whether:

• you are dyslexic (People with M.E. often suffer with 'acquired dyslexia').
• you suffer from another learning difficulty.
• your learning abilities are affected by fatigue.
• your memory affects your ability to learn new tasks.
• your ability to learn tasks varies depending upon the task.

My example:
"I have problems learning new tasks because of my memory. With simple tasks, I usually cannot remember how to do them when I have to try doing them for myself. With more complex tasks, by the time I am several steps into learning the task I cannot remember how it started."


12. Awareness of hazards or danger
State whether:

• you have sensory problems that may affect this.
• you have a problem that affects your coordination.
• you suffer from loss of awareness at times.
• you experience variations in your perception that may affect this.
• your levels of fatigue may affect this.
• your awareness of hazards or danger varies.

My example:
"Hypermobility affects my coordination, often leading me to bump into things without realising I'm going to. When I have anxiety attacks (two or three times a week) I lose awareness, regaining awareness in unfamiliar places. My awareness of hazards and danger vary according to how fatigued I am."


13. Starting and finish tasks
State whether:

• you frequently fail to finish tasks you start.
• you have sensory, cognitive, or learning problems that affect your ability to focus.
• you don't take care of your personal hygiene as often as expected.
• your ability to start and finish tasks varies.
• you know the reason for the above.

Part of my example:
"I frequently fail to take care of my personal hygiene. For example, I usually shower once a week. I am unable to climb into a bath because of my lower back problems, but cannot stand in the shower because the probable Postural Tachycardia Syndrome. As such I have to sit down to shower. Washing my hair is a trail due to the issues I have raising my arms. I have problems with the water hitting me, because my skin is very sensitive, so I usually have a headache after a shower. Plus it's very exhausting, so I usually have to go back to bed after showering."


14. Coping with changes
State whether:

• you can't cope with small changes.
• you can't cope with big changes.
• there is a reason for the difference in your coping abilities.
• if change causes you significant stress.
• your ability to cope with change varies.

My example:
"I can cope with changes to official appointments, provided I have some warning, for example if a counselling or doctors appointment is changed a few days in advance. I have to rest a lot for any appointment though, so if it's cancelled a few hours or minutes beforehand I find it very distressing. I cope a less with social changes. Again, I have to rest and prepare a lot in order to engage in social engagement, a lot more so than for a doctor's appointment. As such, if such an event is cancelled it can cause me to become more depressed for a long time. I cannot cope with sudden change at all; for example, unsolicited phone calls or someone knocking on the front door. Such events are likely to cause a panic attack, due to issues related to my PTSD.

I was recently supposed to have an appointment with my fatigue specialist. When we arrived we had been logged in to see the wrong doctor by accident. This lead to me crying in the appointment. The panic attack kicked in in the car on the way home. I was then exhausted for 10 days afterwards."


15. Going out
State whether:

• you can cope with going out.
• you need to rest or prepare to go out.
• using any aids or appliances to go out has an emotional impact on you.
• you need someone with you in order to go out.
• your ability to cope with going out varies.

My example:
"Issues with PTSD mean that I cannot go out alone to somewhere I am not familiar with. I can cope with trips to places like the doctor's surgery, because I know there is someone I know at the other end who will make me feel safe. Going out in general causes high levels of anxiety, which in turns causes me severe fatigue."


16. Coping with social situations
State whether:

• you suffer from social phobia or agoraphobia.
• you can cope with meeting friends.
• you can cope with meeting strangers.
• you can cope with an official venue (ie, doctor's surgery or hospital).
• you can cope with visiting a friends house.
• you can cope with socialising in your own home.
• you can cope with strangers being in your own home.
• you can cope with officials being in your home.
• any neurological or cognitive problems you have that affect your social interaction abilities.
• any specific issues you have with social situations.
• if your ability to cope with social situations varies.
• you have any form of authority complex.

My example:
"Leaving the house makes me very anxious. I very much enjoy social activities when friends visit me, but visiting people elsewhere is a problem. Specifically, I become claustrophobic in crowds. I struggle with certain types of noise, needing to wear earplugs to cope. My partner recently took me to a bowling alley; I was already very anxious, but the noise in the place caused me a panic attack - when I regained awareness I was sitting on a pavement in an unknown location."


17. Behaving appropriately
State whether:

• you have a behavioural problem that affects your behaviour towards other people.
• people often misunderstand what you say.
• you avoid social situations because of people not understanding you.

My example:
"When I'm fatigued I become impatient and snap at people. When I'm not fatigued people still frequently become upset with the way in which I communicate. I do not know why, but this problem is all the time."


18. Eating and drinking
State whether:

• you need someone to cut up your food.
• you need food liquidised.
• you need someone to place food in your mouth.
• you need someone to manoeuvre drinks to your mouth.
• you take nourishment via a tube.
• you having difficulty eating for any reason.
• you particularly dislike eating.
• you have an eating disorder.
• you purge.

My example:
"With a Fibro flare my hands are in so much pain that my partner has to cut my food for me. With an M.E. relapse all glands become swollen, and my throat very sore, which makes swallowing food difficult."
 

Seventh Session

Now we'll return to the section on Page 5: 'About your illnesses or disabilities'. Having gone through all the other questions you are now probably a lot more aware of the symptoms attributed to your various conditions than you were at the beginning of this procedure.

I tend to over populate this area, so only include what you feel is necessary and appropriate. You can find my version of this answer here. The reason I have put this personal information here is that it can hopefully inspire you to remember symptoms that you may have forgotten or wouldn't have thought to include.

It was very hard to admit to many of the things in that document when I first wrote it. The way I persuaded myself to face reality is by understanding that no one who mattered to me would see it (until I put it online anyway). There is no shame in suffering the things we suffer. We didn't choose to be ill. So take a deep breath and be honest with yourself.

If you do find this section particularly traumatic, come join the group and I'll hold your cyber-hand with your while you complete it.

Anyway, I approach this section with five sections:

1) In the first section I list the conditions with which I suffer. Beneath these I bullet point the symptoms each condition causes, and then bullet points further information such as any aids or appliances I use, methods I use to cope with the condition, and how it may have affected me. (This is what the DWP are seeking).

2) Describes what my life was like before I was ill, and how different it is now. (The DWP does not ask this of you).

3) Describes what good days and bad days, and the approximate ratio of each. (The DWP does not ask for this, but it's important for fluctuating conditions).

4) State which type of day I am describing throughout my form. (The DWP doesn't request this, but again, it's important for people with fluctuating conditions).

5) If you have had help willing in the form, make sure you state it on the form - help includes using guides like this one. (Again, the DWP doesn't ask this, but they'll assume you have all the skills required to fill the form in if you do not do this).
 

Eighth Session

We can now return to page 3 and list any help you may need for the assessment. Going through the form will hopefully have triggered all appropriate ideas. Just in case though, here are a few you may require:

• I will require disabled parking outside the centre.
• If the assessment centre is not on a ground floor I will need a lift or escalator.
• I cannot use public transport.
• I may require somewhere to lie down while I wait for the assessment.
• I may require a dark quiet room while I wait for my assessment.

On page 17 list any supporting documents you are including, and any you're expecting to send on later. Make sure each piece of supporting evidence has your name, date of birth and National Insurance number somewhere visible on every page.

Tick the box to confirm you're sending additional evidence.

And fill in the details on Page 18. Sign it when you have printed it out. (I forgot to sign a form once; they still accepted it).

 Aaaaaand ... relax!

 

Some people send the form by recorded delivery to the DWP, because of their infamous ability to lose documents 'in the post'. However, because forms are received by the post office, and not the actual DWP, there is no one to sign for recorded delivery when it arrives, so it's essentially meaningless to send it that way. As such I recommend using the pre-paid envelope they send you with the form, and phoning a few days later to make sure your form has been received. Allow 10 days before panicking. And always keep a copy!

ESA50 Example Answers for M.E. / Fibro

A full guide to filling in the ESA50 (big ESA questionnaire) is here. This post is for people who have M.E., Fibro, or similar conditions, to give you some extra gentle prods in the right direction. So, use the other guide, but as you reach each section, consider whether any of the phrases / questions below apply to you. Do not forget to enter information about any other conditions you have, too! (For example, because M.E. is my main problem, I nearly always forget to put information about my back problems on forms).

If you can suggest any additional sentences for any of the questions on the form, please do not hesitate to contact us through the group. Please remember that these are in reference to M.E. and Fibro specifically, though.

Beware any benefit cheats - I am throwing wild cards into these suggestions, which will be blazingly obvious to any trained medical professional. If you're a genuine claimant you need not worry about the wildcards, as you will only be using sentences that honestly apply to yourself.

On Page 3, there is a box that says "Tell us about any help you would need if you have to go for a face-to-face assessment."

• I am unable to use public transport.
• I would require an assessment on the ground floor, or a building with a lift, because I cannot use stairs.
• I would require parking at the front of the assessment centre, as I cannot walk further than 50 metres.
• I would require a ramp at the entrance of the building, as I use a wheelchair.
• I would require seating at reception, as I cannot remain standing, for the queue to register.
• Ideally I would wait in a darkened room as I am very sensitive to light, but if this is unavailable I will cover my head / wear sunglasses in the centre.
• Ideally I wait in a silent room as I am very sensitive to sound, but if this is unavailable I will wear earplugs / ear defenders. Please bring this to the attention of the assessor, as I may not hear him / her when they call me for my assessment.
• I require seats with no arms as I need to raise my legs from the floor.
• I require seats with no arms as I need to lie down while I await assessment.

Question 1: Moving Around & Using Steps

• Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome affects me when I'm walking, so I am unable to walk many steps without needing to sit / lie down. (If OI does not affect your walking, do not use it in this section).
• Post Exertional Malaise affects me very quickly, so I am unable to walk many steps without needing to pause to rest.
• It is too painful, due to pain in the muscles of my legs, caused by M.E. / Fibro, for me to walk more than 50 metres.
• It is too painful, due to pain in the muscles of my legs, caused by M.E. / Fibro, for me to raise my legs to use steps.
• I cannot walk any distance unaided due to dizziness / vertigo.
• I cannot mount any steps unaided, due to dizziness / vertigo.
• My balance is too poor to walk 50 metres unaided.
• My balance is too poor to walk up any steps unaided.
• I cannot walk due to weakness in my legs.
• I cannot use steps due to weakness in my legs.
• I usually / often / sometimes crawl up the stairs in my house.
• I use a stick to walk with, because it helps reduce pain.
• I use a stick to walk with, because it helps with my balance.
• I use a stick that has a seat on it, so that I can avoid passing out because of Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.

Incidentally, many people with M.E. and Fibro do not know that they have Orthostatic Intolerance. Do you find that when you remain in a stationary position (standing, some people suffer it when sitting with feet down, too) that you become light headed, slightly nauseous, kind of sweaty palms, and just generally don't feel right? Is it alleviated by raising your legs? If yes, then you need to be tested for it (most doctor's aren't familiar with it, so it's useful to print out information about it for them). For now though, on your ESA50 refer to it as becoming light headed or feeling like you will pass out. (The reason I keep using three names for it is because different specialists seem to know it by different names. The last one, "Postural Tachycardia Syndrome" isn't the same as the others, but they are part of Postural Tachycardia Syndrome). Complicated, isn't it!

Likewise, in case you're unaware of what Post Exertional Malaise is: It literally means "illness after activity". Illness usually being exhaustion or extreme fatigue, in this case. People with M.E. generally have to be very careful how much activity they undertake, as they will pay for it later. We pace what we do, because we have limited energy resources. That nasty payback later (which varies a little from patient to patient) is the Post Exertional Malaise.

If you're unfamiliar with both of the things I've just described, I highly recommend you do some reading about M.E., starting with the symptom section of the International Consensus Criteria for M.E..

Question 2: Standing & Sitting

• I am unable to remain in a stationary standing position for more than ## minutes, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
• Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome last caused me to pass out from a standing position on ##/##/####.
• I struggle badly from Post Exertional Malaise. As such I am frequently so exhausted that I cannot sit up at all, let alone move from one seat to another.
• I am unable to remain in a stationary standing position due to lack of strength in my legs.
• I am unable to remain in a stationary standing position due to dizziness / vertigo causing me to fall.
• I am unable to remain in an upright seated position due to weakness.
• I am unable to move from one seat to another without help, due to weakness in my arms and legs. I cannot lift my own body.
• I am unable to remain in a seated upright position without my legs raised in front of me, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
• I am unable to remain in any position, whether seated or standing, for more than ## minutes due to discomfort.
• I use a stick with attached seat because I am unable to remain in a standing position due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.

Question 3: Reaching

• I am unable to raise my arms above my head due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
•  I am unable to raise my arms as if to a upper shirt pocket, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
• I am unable to raise my arms above my head due to weakness.
• I am unable to raise my arms as if to an upper shirt pocket, due to weakness.
• I am unable to raise my arms above my head due to pain in the muscles.
• I am unable to raise my arms as if to an upper shirt pocket, due to pain in the muscles.
• I am unable to raise my arms above my head as it causes / exacerbates my dizziness / vertigo.
• I suffer badly from Post Exertional Malaise. As such my arms often feel too heavy to lift above my head.
• I suffer badly from Post Exertional Malaise. As such my arms often feel too heavy to lift them as if to a shift pocket.

Question 4: Picking up & Moving Things

• I am unable to pick up either a half litre or a litre carton due to extreme pain and / or stiffness in my hands.
• I am unable to pick up either a half litre or a litre carton due to disorientation caused by extreme fatigue.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to pain in the muscles.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to extreme fatigue making them feel very heavy.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to weakness.
• I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to pain in the muscles.
• I am unable to pick up and move an object from one place to another due to a lack of co-ordination caused by extreme fatigue.
• I cannot bend to pick up a large object such as a box, from the floor, due to pain in my legs.
• I cannot bend to pick up a large object such as a box, from the floor, due to vertigo / dizziness.

Question 5:  Manual Dexterity (Using Your Hands)

• I cannot *pick example from form* due to pain and / or stiffness in the muscles of my hands.
• The ability to use my hands is severely affected when I am exhausted, because I become very unco-ordinated.

Question 6: Communicating With People

• I am frequently so exhausted that my speech becomes very slurred, and I cannot formulate a coherent sentence (with written, typed, or spoken) due to struggling to find the required words.
• When I'm extremely fatigued I am unable communicate sensibly in a verbal manner.
• When I'm extremely fatigued I am unable to communicate sensibly in writing.
• When I'm extremely fatigued I am unable to communicate sensibly by typing.
• I am often / frequently / never able to communicate by typing due to severe pain in my hands.
• I am often / frequently / never able to write due to severe pain in my hands.
• I am often / frequently / never able to speak due to severe pain caused by TMJ (Temporomandibular Joint Disorder).

Question 7: Other People Communicating With You

• I frequently struggle to understand what people are saying to me due because of tinnitus.
• I frequently become confused when people talk to me, because when I'm extremely confused my audio processing is fairly / moderately / severely affected.
• When I'm extremely fatigued I struggle to follow words on a screen.
• When I'm extremely fatigued I struggle to read more than a few sentences / paragraphs / pages.

Question 8: Getting Around Safely

• Severe fatigue affects my cognitive ability to problem solve. As such I struggle to find my way around somewhere unfamiliar.
• Severe fatigue affects my cognitive ability to problem solve. As such I struggle to find my way around somewhere unfamiliar without it causing further exhaustion.

Question 9:  Controlling your Bowels & Bladder, and Using a Collecting Device

• I am often unable to get to the bathroom when I need to, due to extreme weakness. As such I use incontinence pads.
• I often have urinary incontinence accidents.
• I often have incontinence accidents from my bowels.
• The medication I am taking for #### causes unpredictable loose stools, so I often suffer incontinence which may stain my clothing.
• The medication I am taking for ##### causes urinary urgency, so I often suffer urinary incontinence because I cannot reach a toilet quickly enough.
• I often suffer incontinence at night / in my sleep.

You can include problems with menstrual cycles that are difficult to control or may stain your clothing, in this section too.

Question 10:  Staying Conscious When Awake

• CFS affects my sleep pattern and Circadian Rhythm severely. I need to sleep approximately ### in each 24 hour cycle. My personal body's most comfortable rhythm is to wake at ####, sleep at ####, with #### rest / sleep periods in between. 
• On worst days I will sleep straight through several days at a time.
• I am constantly at risk of passing out due to Orthostatic Intolerance / Orthostatic Hypertension / Postural Hypotension / Postural Tachycardia Syndrome. The last time I passed out due to this was #####.
• When I am extremely fatigued my cognitive function is severely affected, to such a degree that I am at risk of having accidents, or performing acts that are dangerous. My ability to process information is reduced by approximately ##%. [This is what we call brainfog; most health professionals are unfamiliar with this colloquial term we sufferers use].

Question 11: Learning how to do Tasks

• Extreme fatigue affects my cognitive ability. As such I find it difficult to follow the steps taken when learning a new task.

Question 12: Awareness of Hazards & Danger

• When I am extremely fatigued my cognitive ability to process the information surrounding me is reduced by approximately ##%. As such I am at high risk of not processing a hazard or danger before it happens.

Question 13: Starting & Finishing Tasks

• Severe exhaustion significantly affects my cognitive ability and memory. As such when I attempt to learn a new task, I am unable to remember the beginning of the process when I'm in the middle, let alone when I've reached the end.  
• I am unable to perform two sequential personal tasks (ie, brushing my teeth and washing my face), one after the other without taking a rest break in between the two tasks.

Question 14: Coping With Changes

•  Because any activity causes me severe Post Exertional Malaise I have to prepare myself a lot in advance. I usually have to rest before an activity, and then again after an activity. As such, if an activity is re-scheduled it can be detrimental to my health. If it is brought forward, I will be unprepared for it, and may have to cancel due to not being physically and cognitively ready. If it is moved backwards it can be upsetting, as I will have wasted valuable days resting in preparation for the activity.
• Small changes, such as a doctor's appointment running late can affect me severely due to the immense amount of stimulation in waiting rooms (a lot of sound, light that I cannot hide from, etc).
• There is no such thing as a small change to my routine, because every activity I undertake must be prepared for carefully due to needing to pace and use my energy extremely carefully. For example, if I visit my GP for ten minutes in the week, I will need to rest in a darkened silent room, for several days in order to return to what is 'normal' for me.

Question 15: Going Out

• Severe fatigue affects my cognitive ability, as such planning a journey.
• Severe fatigue affects my cognitive ability, as such, navigating a new place are too difficult.
• Severe fatigue affects my cognitive ability, as such planning a journey and navigating a new place are too difficult.
• I cannot walk to my nearest shops.
• I cannot drive.
• I cannot use public transport due to over stimulation.
• Fatigue affects my ability to drive. As such I cannot reliably and repeatedly drive myself anywhere.
• I need someone with me when I leave the house, because I become fatigued very quickly, so can place myself in danger.
• I need someone with me when I leave the house as I need to use a wheelchair, which I cannot self-propel.

Question 16: Coping With Social Situations

• I become anxious about meeting new people, because most people do not understand that severe fatigue affects my speech and cognitive ability. So people often think that I am drunk or slow.
• I become anxious about meeting people I do know, because I know that any activity will have a knock on affect which can last for days or even weeks.

Question 17: Behaving Appropriately

• I often fall asleep in social situations, which some people do not like.
• When I am fatigued my cognitive ability is severely affected. It takes me a lot longer to process information around me, situational and conversational. It often gives the impression that I am not listening, or not interested in what people are saying or what is happening.
• When I become fatigued I experience a lot of pain, which causes me to become very grumpy. This always has a negative affect on social situations.

Question 18: Eating & Drinking

• I need help to eat and drink because my hands are too painful to hold cutlery or a drinking receptacle.
• I need to be prompted to eat and drink because my memory is so poor that I often forget to eat.
• My memory is very poor so I need someone to keep track of when I eat and drink.
• I cannot plan a meal due to my cognitive abilities being affected by severe fatigue.
• I cannot chew food due to TMJ (Temporomandibular Joint Disorder).
• I cannot swallow food or drink due to extreme weakness.

The Physical / Mental Dilema

Changes at the beginning of January 2013 mean that points will only be awarded for the mental health part of the questionnaire, for problems that can be directly attributed to a mental health problem or a learning difficulty. Similarly, points will only be awarded for the physical part of the questionnaire, for problems that can be directly attributed to a physical health problem.

Physical symptoms caused by your health condition will (should) be taken into consideration. For example, Post Exertional Malaise should be taken into consideration.

Physical symptoms caused by medication for a physical condition may be taken into consideration. For example, diarrhoea as a result of (too much) thyroid medication should be taken into consideration.

Physical symptoms caused by medication for a mental health condition will not be taken into consideration. For example, Urinary Hesitation caused by anti-depressants will not be taken into consideration.

Mental health symptoms caused by your health condition will (should) be taken into consideration. For example, people with M.E. often suffer a symptom called Acquired Dyslexia; this should be taken into consideration.

Mental health symptoms caused by medication taken for a mental health condition may be taken into consideration. For example, depression caused by anxiety medication should be taken into consideration.

Mental health symptoms caused by medication taken for a physical condition will not be taken into consideration. For example, cognitive dysfunction (brainfog) caused by pain medication will not be taken into account.

The last time I read the guidelines for assessors on Chronic Fatigue Syndrome (2010) it gave them the choice of whether they could assess people with CFS / M.E. as:

• having a mental health condition.
• having a physical condition.
• having a combination of the two.

As such, I personally advise that you fill in both parts of the questionnaire as fully as you are able, in the hope that the person assessing you will assess M.E. as being both a physical and a mental health condition (even if you do not agree that it is).

Be very careful how you phrase what you say, making sure you explain clearly how each symptom is attributed to M.E.. Remember that they have a list of your medications towards the beginning of the form, and are likely to be familiar with common side effects.

 

This isn't reasonable is it? Some symptoms that you suffer as side effects of medication are not taken into account. Yet, if you do not take the medication your abilities are totally different. As such, I make the following suggestion:

• state clearly which symptoms are caused by your illness.
• also state clearly which symptoms are caused by your medication.
• if both your illness and medication cause one symptom, make sure that it is understood that the illness does cause it too.
• state how much you suffer / how much worse your abilities are, without that medication.

For example,
"M.E., pain medication and sleeping medication cause severe concentration impairment. I can barely concentrate for five minutes without being distracted or becoming fatigued. Eliminating pain medication and sleeping medication does not improve concentration."  

Then in the pain and sleeping parts of the form  

"Without sleeping medication I sleep approximately three hours a night at most, and it is unrefreshing sleep" 

and  

"Without pain medication I am in continuous discomfort and pain that I cannot bare."

It may, or may not, be taken into account by the assessor / Decision Maker, but it simply cannot be taken into consideration if you do not include it.

I Can But I Can't!

Remember when filling in the questionnaire (ESA50) that they are assessing you for your ability to work. It is for this reason that I usually suggest that people with M.E. fill in the questionnaire in regards to how they are on their worst days. By describing your worst day, you are describing the least you are able to do every day. Some advice giving places disagree. Obviously it is up to you how you approach it, but what is important is that in the space you are given at the beginning of the form, you tell them how you are filling it in.

For example:

"I am filling in the form describing my worst days. Approximately 4 days in 7 are this way."

(If your worst days are very rare, then I'd suggest filling it in with your most usual days instead).

The form tries to make everything very black and white. Life isn't black and white. Don't go through it just ticking boxes, because you will make it far too easy for them to turn your application down. Write in the spaces you are given to write in, but be concise, because Decision Makers have limited time to look at your evidence (I believe it is ~20 minutes per case).

For each question, consider these things carefully:

• severe discomfort.
• pain.
• breathlessness.
• extreme fatigue.
• repeatability.
• reliability.
• safety.
• variablility.

If you can do the activity, does it cause you discomfort, or severe discomfort?
If you can do the activity, does it cause you pain?
If you can do the activity, does it make you breathless?
If you can do the activity, does it cause you fatigue or extreme fatigue?

If you can do the activity, how often / soon can you repeat it?
If you can do the activity, can you do it to a reliable level?
If you can do the activity, can you do it safely?
If you can do the activity, can you cope with variations in how it is done?

An employer doesn't want an employee who can only climb two steps an hour!  Or an employee who knows how to turn the kettle on, but is likely to pour hot water over their hands.

Some examples of how to use the above points:

• I cannot walk 50 metres repeatedly or safely, without undue discomfort, pain, and extreme fatigue.
• I cannot remain stationary, standing in one place, for more than 40 seconds, without severe discomfort, pain, and extreme fatigue, reliably, repeatedly, or safely, due to Postural Tachycardia Syndrome.
• At times I can raise both arms, but most often it is with severe discomfort and pain, often causing extreme fatigue. I cannot ever raise both arms repeatedly, or reliably.
• I cannot learn to do a task such as using a washing machine without severe discomfort and fatigue, reliably or with variability.

You can of course add your own descriptors (I use 'distress' a lot on my form), but they may not be taken into consideration by the assessor or Decision Maker.

Variability

Most of those criteria are subjective. That which is severe discomfort to someone unused to pain may be mild discomfort to someone who's lived with pain all their life. Variability stands out as a hard criteria to understand.

It is mostly in reference to the mental health section of the form. (Though, you could try and apply it to the physical side; you may be able to climb normal stairs, but totally unable to cope with spiral staircases, for example).

It is easiest to use in the following questions:

11. Learning how to do tasks
12. Awareness of hazards or danger
13. Staring and finishing tasks
14. Coping with changes
15. Going out
16. Coping with social situations

Fluctuationing Conditions

M.E. is a fluctuating condition. As such, trying to fill in the black and white, yes no, pigeon holing form (the ESA50) is particularly difficult. M.E. is a round peg which we're trying to ram in to a square hole. We have to make it fit.

One part of doing this, as already mentioned, is to state at the beginning of the form whether you are filling it in as regards your condition on a bad day, or your condition on an average day.

The other thing to do, is to give specific examples to illustrate how you fluctuate. When doing this, you need to understand how the Decision Maker works. They essentially have a tick box system, which they have to try and fit your answers into, in order to award you points. And they want to award you as few points as possible. As such, when you describe fluctuations be careful not to give the impression that you can do more than you can. Some examples:

Bad: "Sometimes I can walk quite a lot further than I can other times."
Good: "Most of the time I cannot walk 50 metres. On my best days I might be able to walk 50 metres, but I wouldn't be able to repeat it reliably or safely."

Bad: "I can cope with some social situations, but not others."
Good: "I can cope with official social situations, such as attending a doctor's appointment, but I cannot cope with a social situation with friends, or where there is noise and new people."

 

Supporting Evidence

One of the first things I usually ask people when I'm helping them, is whether they have their supporting evidence in place yet. It can often take weeks to get letters from doctors or other professionals. As such, I generally advise to get as much supporting evidence together before even requesting the ESA50 from the DWP. Of course, if you're being moved from Incapacity Benefit, or being re-assessed, you don't have that luxury.

Your case will go before a Decision Maker for a decision to be made. The three things they will look at are:

• the result of your WCA (Work Capability Assessment)
• your application form (ESA50)
• your supporting evidence

The Work Capability Assessment

As the result of the WCA the person who assessed you makes a recommendation as to what the result of your ESA application should be. Previously, Decision Makers were found to be using primarily the Assessor's recommendation upon which to base their decision. They were and are supposed to use all three sources evenly.

The WCA is essentially someone who is qualified in health, observing factors about your abilities, your body, and your appearance, and ticking boxes on a computer. I presume that the boxes probably add up to give a number, which they may compare to the score from your ESA50. We do know that the tick boxes have very specific answers, and that the assessors prefer to try and pigeon hole you than type in their own answers. Your job is try to get them to make a report that does actually represent you.

The experience of the assessment itself, what to expect, etc, will be covered in another post.

The Application Form

The Decision Maker will go through your application form (ESA50) using the descriptors (which you can find here, and here). This gives your application a score. The score from your form can determine the outcome of your application if you have no other evidence.

Supporting Evidence

Supporting Evidence can come in many forms. It is far from limited to the following:

• letter from your GP
• letters from any of your specialists (eg, physiotherapists, psychologists, counsellors, neurologists, endocrinologists, etc).
• letter from an Occupational Therapist
• letter from non NHS specialists (eg, opticians, osteopaths, accupuncturists, etc)
• copies of blood tests
• copies of scans (eg, MRIs, CT-Scans, X-rays, ultra-sounds, etc)
• letter from a carer
• letters from family or friends who see you on a day to day basis. (I've even heard of letters from Reverands and MPs being submitted).

Medical evidence carries the most weight. Blood tests, and scans are irrefutable. Of course, with M.E. there's not much you can show with a scan, though blood tests that could be helpful include:

• Vitamin B
• Vitamin D
• Thyroid
• Diabetes
• Gluten intolerance
• Ferritin
• Iron
• Antibody levels

(There is only any use in providing the results of these blood tests if they show an irregularity).

If you are requesting a letter from a medical professional:

1. Make them aware of regulations 29 and 35 if you believe they may apply to you.
2. Ask them to give you the letter, rather than have them send it straight to the DWP.
3. Preferably have someone who is familiar with the DWP, check through the letter. Ask the person who wrote the letter to make any changes required, before using it. (You are most likely paying for the letter after all, so you want it to help you rather than be used against you).

When sending in additional evidence with your form:

• Keep a copy of every piece of evidence you send.
• Put your name, your date of birth, and most importantly your National Insurance number somewhere clearly visible, on every piece of evidence.
• On page 20 of your ESA50 tick the box to state that you are including medical reports, and list in the box what evidence you are including with it. If you know you will have more to send on afterwards, list it there too.

You don't have to send all your additional evidence with the form. You can send it late, but it's best to get it to them as soon as possible, because you want it to be with your form when the Decision Maker looks at your case. When you send in late evidence:

• Keep a copy of every piece you send.
• Put your name, your date of birth, and most importantly your National Insurance number somewhere clearly visible, on every piece of evidence.
• Include a request for them to verify that they have received this information and placed it with your case. You could a self address envelope (they don't tend to use them). You could simply send it recorded delivery to start with. Or you can phone them to check it's been received.

Getting Supporting Letters Right

 

Medical Professionals

When writing supporting letters, people (doctor's in particular) need to make statements of their own observations, rather than flaky sentences. Some examples:

Bad: "Ms Jones has told me that she has M.E.."
Good: "Ms Jones is diagnosed with M.E.."
Better: "Exploratory tests have proved inconculsive for Ms Jones, but her symptoms are consistent with M.E.."

Bad: "I think Ms Jones is affected by severe anxiety."
Good: "Ms Jones suffers with anxiety."
Better: "Ms Jone's medical records show a history of anxiety attacks. She is being treated using Sertraline 50mg/day"

Bad: "Ms Jones cannot work most of the time, but sometimes she can."
Good: "It is my assessment that my patient would not manage a full time job."

(It isn't actually your GPs responsibility assess whether you can work or not, so unless they are saying you cannot work at all, it's best to ask them to remove any reference to your work-ability from the letter).

This is one of the reasons it's so important to see your GP regularly, even if you don't have any new problems. You need your medical records to be kept up to date; and you definitely need them to state that you do have M.E.. Think of it this way; if the DWP write to your surgery requesting information about you, but your personal GP is away on holiday, what sort of picture is another GP going to build of you from what they find on your records?

Another issue: Most surgeries are now requesting that people pay for supporting letters, because of the rising number in people asking for them. (Nb, the number of requests rising is because of the DWP insisting upon them, rather than the number of people applying for ESA rising). The Decision Maker has a responsibility to request information from any medical professionals you list on your ESA50, if you have not sent evidence from them already. If they fail to do this, it is grounds for appeal in itself.

As such, even if you cannot afford the surgeries charges for a supporting letter, it is still advisible to have an appointment with your GP (and write to any specialists you list) about the application. Make sure they are up to date on your condition. It can be worth talking specifically about what you need them to say to the DWP, and give them a copy of Regulations 29 and 35.

 

Friends and Family

Letters from people who are not medical professionals are not given anywhere near as much weight, but the useful thing about them is that they can give the Decision Maker an insight into your every day life. Friends and family often make observations that we are so familiar with ourselves that we don't notice them any longer. Some examples that surprised me from my boyfriend's supporting letter:

"She has recently taken to bringing a childhood toy to bed"
"Her sleep is extremely poor anyway, [..] she spends all night tossing and turning."

"It is extremely obvious to me when the pain killers wear off. (She becomes very irritable)" (I hadn't personally made this connection).

"she walks like a crab"

"making her cry for days on end (which then causes migraines)" (I hadn't made this connection either).

As with medical professionals, you need to be certain what your friends and family say won't do you more harm than good. Where a medical professional can speak with authority though, your friends and family cannot. It is best if they don't specifically comment on your diagnoses, but that they work to make clear the difficulties you struggle with.

Some of the things it can help for them to explore:

• difficulties with getting out of bed
• difficulties with washing and or dressing
• difficulties with preparing meals
• difficulties with eating meals
• difficulties with continence
• difficulties with walking
• difficultires with using stairs

(Basically go through the questions from the form and see if they have any comments to make).

When asking someone to write you a supporting letter I advise against leading them. You want a totally unbiased account of your abilities. Once they've written it you can ask them to tweak it if you're not happy with it, but do not ask anyone to write anything that is not true.