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:
- 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.
- Give yourself breaks, in which you reward yourself somehow. Letting this process make your health worse is a big no no.
- Start the working on the form as soon as you get it. The longer you leave it, the more stressful it becomes.
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!
