Olana's 10 step guide to the ESA50

I am aware that the ESA50 has changed since I wrote this piece. I do endeavour to re-write it, with the new ESA50 in mind. However, the principles outlined below still apply to the new form. Good luck!

The brown envelope arrives. You've been waiting for it. Either you knew it would happen because you've heard rumours about people being transferred from Incapacity Benefit to Employment & Support Allowance, or you recently sent a sick note to the DWP and made the first steps to applying for ESA over the phone. Either way, that brown envelope isn't particularly welcome. Inside is the ESA50 form; the form that gives people nightmares.

You're not going to have nightmares though, because I'm going to help you fill that form in. We approach this as a project, and if possible, we actually make it fun.

First: look at the letter that came with the form. There is a date on it by which you must return the form. You usually get between four and six weeks. You will aim to have your form ready to post a week before that date.

Second: take a deep breath, and think about your frame of mind. No one you know will read your form. The people who do read it are of no importance to you. You MUST let your guard down to fill it in. Everyone who is ill has that mask that they put on every day, the smiley face, the 'I'm ok' facade ... now you take it off. The difficult part is being totally honest with yourself.

Third: make sure you have some treats available. Filling in the form can be very depressing, so you will take frequent breaks and do something you like, speak to someone you love, eat some comfort food, etc. Do not expect to get the whole form done in one day.

Ok, now let me explain a few things about how all of this works.

- Atos and the DWP are not looking at what you can't do, they are looking at what you can do. As such you need to think in terms of your worst days; so that 'what you can do' is realistic every day. [I am assuming the the majority of my readers have M.E. or Fibro, which are fluctuating conditions. If you do not have a fluctuating condition then don't worry about statements like this one].
- They use 'descriptors' to score you. You are given points for each part of the form. You need 15 points in total to claim ESA. 15 points in only one section will put you in the Support Group.
- You need supporting evidence. By default your word is not to be believed. Ideally you will get letters from your GP and any specialists that you are seeing or have seen. This is one reason it's important to have a GP who is sympathetic to your illness. [If you're not yet going through the ESA process, but expect it to be upcoming, I highly recommend seeking a good GP now]. 

- The person who looks at your form and your supporting evidence has about 20 - 30 minutes to look through everything. As such you want it to be as comprehensive as possible.

We will come back to all of that bit by bit as we go through the form though.

Step 1)
Do not make a mark on the form they have sent you. Instead download a claim form here:
http://www.direct.gov.uk/prod_consum_dg/groups/dg_digitalassets/@dg/@en/@money/documents/digitalasset/dg_195544.pdf
If you have access to a Word version of the form, even better.

Step 2)
Fill in the easy stuff:
- Name address, etc
- Skip 'About your illness' for now
- Dates you can't make in the next 3 months. If you're uncertain what medical appointments you have coming up, you should be able to find out over the phone from your GP surgery.
- Your medications. Make notes to yourself if you need to come back to anything later.
- Your GPs info.
- Info about your specialists. They only provide space for one specialist. If you're using a Word version of the form then copy and paste the table as many times as you need it. If you're using the PDF, then create a Word document, mark it 'Extra Info', put your NI number, DOB and name on it, and put the information about your other specialists there. Any information that you can't fit on the PDF add to this Word document with the question number beside it as you go through the form.
- the paragraph about your hospital visits
- etc

Step 3)
"About Your Illness & Disabilities"
What a small box, huh!?! We are not going to be using their boundaries. You will want some time to work on this section, and you will probably keep coming back to it as you fill in the rest of the form.

You may think I'm telling you to put too much information here.  You don't have to follow my advice. The way I look at it; it's the first thing the Decision Maker reads on the form, this is where you paint the picture of what your life is like.

So:
- Make a list of your illnesses, yes, all of them. It may look something like this:
* M.E.
* Fibro
* Hypermobility
* Hypothyroidism
* Cystitis
* Eczema

- Underneath each illness create bullet points of each symptom you suffer from that illness. It will start to look like this:
M.E.
* extreme weakness
* orthostatic intolerance
* extremely poor memory
* vulnerability to infection

- Write a little more description next to each symptom that you feel requires it. Not a huge amount. Something along the lines of:
* extremely poor memory: short term memory, long term memory, memory recall, all affected badly.
* vulnerability to infection: hyperactive immune system, eg. My body reacts to a cold as if I have full blown influenza.

- After the symptoms for the illness, make a new list of the ways you have adapted for that illness. Still keeping it brief. Some examples:
Underneath M.E.
* I use a shooting stick (walking stick with seat) for general use outside of the house. It aids my balance, helps me coordinate, and I use the seat part when I cannot cope in situations where a person would normally remain standing.
* I take or hire wheelchairs when I have to be out for longer periods of time, because I can only comfortably stand for about three minutes.
Underneath Cystitis.
* I also carry Cymalon sachets so I can start treatment immediately.
I personally put this list in italics on the form to distinguish it from the symptoms, but I do not believe you can do that within a PDF.

- Write a series of paragraphs about your life. Still remembering the reader has a time limit. Describe how your life was before you became ill, and then write about what your life is like now. I described my work, my social life and hobbies I was forced to give up in order to illustrate that lying in bed all day and watching the television really are not up my street (remember, we're scroungers, that's what they assume we like doing). I also made pains to explain how much I was earning when I became ill, how much I would be earning now, and showed them the maths that being on ESA is a fricking massive pay cut; not a choice any sane person would make! If you've lost friends and family because of being ill make sure they know it. If you've decided you can't have children, due to illness, again, put it in. Any sacrifices you've made due to illness; include them.

- Finally, four more paragraphs and one line. One paragraph describing your worst days, one describing your 'average' days, and one describing your better days. (Don't use the word 'best'). Then a paragraph explaining how many of each you have per week (or per month if you don't have a 'normal' week). Finally add a sentence after everything else stating that you will be filling in the rest of the form in reference to your worst days. That line there covers your bum for when a nasty DWP operative catches you popping into Tesco at some point down the line.


Ok, you've done that section? You're doing really really well! That's the hardest part of the whole form to get done. If you're struggling with it, don't worry, you'll get further inspiration both as we go through the rest of the form and as you potter around doing your usual day to day things.


Step 4)
Right, now let's have a look at the Descriptors. You can see them here. Depending upon when you are reading this post, you may wish to check the date of the descriptors. Even if they seem to be out of date they will give you an idea of how it works.

Have a look through the descriptors and make sure you understand how they work. There is the number of the question, with the question, beneath which you have a description (the descriptor) of what a claimant may be unable to do. Underneath, in blue, are the points awarded for that descriptor.

You are now going to create a series of sentences from those descriptors and have a quick whizz through the form with them. Don't worry about anything else in the answer sections for the moment.

Look at question 1, regarding mobilising. Mobilising means walking. If you cannot walk 50 metres, your first sentence, which will go in the box under the first question, will be:
"I cannot mobilise more than 50m on level ground without stopping, reliably, repeatedly, safely and in a timely manner without significant discomfort or exhaustion."
If you cannot use steps your sentence in the next box would be:
"I cannot mount or descend two steps unaided by another person even without the support of a handrail reliably, repeatedly, safely and in a timely manner without significant discomfort or exhaustion."

Do you see the pattern? You go through the questions, find the descriptor that best fits you, then add "reliably, repeatedly, safely and in a timely manner without significant discomfort or exhaustion." You can alter it a bit to fit what is true for you. I have added "distress" to a few of the later ones for example, and left out "safely" or "in a timely manner" from one or two. Making sure you meet descriptors is the key to scoring points. You're basically using their game against them.

Step 5)
I hope you're remembering to take breaks and treat yourself. This step is the easy one. Go through each question and tick the boxes that apply to you. If you're using a Word version of the form you can insert a tick using Windings from 'insert symbol'. (Or you can find one on Google and copy it).

Try to avoid ticking "it varies" for many of the questions. I am lead to believe that it automatically scores you zero points. We don't want zero points. So, remember that you're filling in the form according to your worst days.

Step 6)
Forget the actual form filling for a while. If you've not already done so, get on to your GP and specialists about supporting letters. It has come to my attention that most doctor's don't really understand the whole ESA thing, and as such many practices have the policy of not giving supporting letters until a patient needs to appeal. If your practice is one of these I suggest printing out my previous blog post and giving it to your GP. It may help them to understand the importance of a supporting letter sooner, rather than later. It saves the government money after all, if they don't have to pay for you to go to tribunal.

If your GP is open to discussing supporting letters with you, here are a few tips:
- a GP needs to sound certain. "My patient is ####", not "I believe my patient is ####" and not "My patient tells me ####"
- the letter should include a simple list of your diagnoses, and how long you have had them.
- it is also useful for your GP to write a couple of short paragraphs about your pain / discomfort levels, and what your limits are because of your illness. It is best to discuss this part with them.
- if your GP believes that working will make you more ill, or prevent you from recovering, they need to state it clearly. This is important.

If you can't get supporting letters from doctors don't worry. There is other supporting evidence you can include. We'll look at that after we've finished the form.

Step 7)
My recipe for filling in each section is more or less the same. You will probably find that you repeat yourself a lot throughout the form. Don't be afraid to do so; even copy and paste the same sentences. The assessor will become familiar with you and your situation when they see the same things repeated.

Below our initial sentences I use three lots of bullet points. The first explains the reasons I have problems with whatever that section is about. The second I write how I cope with those problems. The third I write about consequences. So for example ...

I have problems with walking because:
- I have pain around my knees due to hypermobility.
- I have pain around my ankles due to hypermobility.
- I am unbalanced on my feet so stumble a lot, and fall sometimes. I frequently lose my balance suddenly and without warning.

As such:
- I use a stick to walk; it helps with the balance problem, can take pressure off my lower back and enables me to walk more gingerly when I have other pains.
- I frequently cannot walk more than a few yards without having to stop due to pain, discomfort, or fatigue.
- On outings I will use a wheelchair. I need someone to push me, as it is too exhausting for me to use the self-propelling ones.

These affect me:
- I find it embarrassing to use the stick. I hate that people stare at it and at me. This is partly why I avoid going out. I feel that people are judging me, that they assume I’m pretending to be ill.
- I find it even more embarrassing to use the seat on the stick. It is extremely necessary for me to be seated, but I’d rather sit on the ground than have people stare at me on the stick.

Bullet points keep it nice and simple for you to add more as and when you think of things. They also make it much easier for an assessor and the Decision Marker to find the relevant bits of information when they need them.

In some sections I have listed what I can and cannot do instead, for example in the reaching section. (But then I don't really understand that section). In the Mental Health part of the form I have simply only used the 'I have problems' bullet points and 'As such' bullet points, and left off the 'These affect me' ones. That is my recipe though; it may not be right for you. Make sure that you are comfortable with how you fill in the information before you send it off.

Something else you might like to do is add a short anecdote or two after the bullet points, describing situations that illustrate what the bullet points say. I've only done this in one or two sections because I am so aware of how little time they have to go through the form, but I know people who have used anecdote after anecdote throughout their forms.

It's not easy going through each section trying to think how you are affected by x, y and z. So get up and walk around. Do whatever that section covers; walk up the stairs, or move from one seat to another. Think about the situations in a work place where you may have to do these things, the problems that could arise. Think about different kinds of furniture, stairs. And remember, it's your worst days.

If there are things about your health that you don't feel are covered by the form then force them in to one of the sections. It is important to make sure that EVERYTHING is on there. There's no way that they can know without you telling them. For example, there isn't a section about how standing still affects you. I have severe problems standing still, due to Orthostatic Intolerance. It is possibly my biggest problem after pain, so I had to make sure it went on the form. I included it under walking and using stairs, sitting, and problems in social situations.

Try to think outside of their boxes too; they've given you leading examples in some sections, don't make the mistake of being hemmed in by them. For example, there's a point on the form that asks whether you can pick up half a pint of milk. You may think to yourself "Yes, that doesn't weigh very much. I can pick up half a pint of milk.". Can you? Do you have Fibro? When you have a really bad Fibro flare can you grip a pint of milk? I know I can't! Another such example would be those who have endometriosis. The severe problems with overflowing in that way are not covered anywhere in the form; so put it in the incontinence section, and add it to social problems.

If you have a problem that you really think cannot go anywhere on the form then write yourself your own covering letter. I have actually done that this time myself. The problem I cover in it does fit in sections on the form, but they play it down too much. So I've written them a letter, telling them my story. Just two pages mind; they have limited time after all.

And so, you have finished the form! Well done you :)

Step 8)
You still want to make sure that you have enough supporting evidence going in that envelope though. So:
- If you have any copies of test results from the last few years, put them in (make sure you keep copies too). Blood tests, scans, X-Rays, MRIs, etc.
- If you have called out emergency services for any reason, put a copy of the incident report in (or whatever it is they give you). Even if the police were called for a domestic row, still include it.
- If you have been to Accident & Emergency ask the hospital for verification that you did so. (The DWP will not accept your word without evidence).
- If you have M.E. copy the symptom section from the International Consensus Criteria for Myalgic Encephalomyelitis into a document. Explain at the top that the whole document is 25 pages long, so you're only sending them this part, and the symptoms that you suffer with on a daily basis have been highlighted. (Then highlight them).
- If you have Fibro copy the American College of Rheumatology Criteria for Diagnosis of Fibromyalgia to a document, again highlighting the bits that are relevant to yourself. If you understand how it works you can explain it to those reading your documents, but I didn't, because I don't understand it!
- If you have other main diagnoses, seek the relevant documentation and repeat the same exercise. Remember they have limited time though, so don't send them this for every single thing you suffer with. For example, I do not need to send them documentation explaining Cystitis or Eczema.
- Have your loved ones write supporting letters. A partner, spouse, parent, sibling, or best friend; whomever has seen you suffer the most. You don't want the letter to be long. Have a look through the descriptors with them, and ask them to write a little about those that affect you the most. If there's anything that they feel really strongly about writing, there's probably a reason they feel that way, so make sure it's included.
- If you left work through illness within the last couple of years and are still friendly with your manager, it can be useful to have a letter from them describing watching you go down hill, and how much of a hard worker you were.

Step 9)
Have someone go through your form and evidence to check it through. Preferably it will be someone who is familiar with the system. You can find groups on Facebook who are used to doing this. I am sure there are also forums and websites where you can get help. You can look up your local CAB or DIAL too if you are up to going out.

Step 10)
Tidy it up. Print it out. Put it in the post. Go to sleep.


And that, I believe, is that! For now.

Petition re Benefits

If you click the title it'll take you to the petition. I'm not entirely clear on what the petition is trying to achieve, but I agree with what it says, and if there's any chance of it making a difference I'm all for it.

In the name of austerity, the UK Government is slashing benefits which sick and disabled people rely on to be able to function in our homes and communities. The results are truly horrific.

Jamal died within 3 weeks of undergoing an assessment where he was told he was fit to work. He was not the only one. Other people's conditions have deteriorated badly from the stress of it all. And those of us who have not yet had to face these assessments live in fear.

Lucy was stripped of her benefits by ATOS (the company paid millions to cut the welfare bill) and before her appeal could even be heard, she had lost her home. Too many people to name, with mental health problems, have committed suicide when they have been told they are fit to work; some just on receiving the letter telling them they had to go for an assessment.

Andrew’s MS caused him to lose his job and though he went on re-training courses, he couldn’t find another, because his hands had gone numb. But ATOS found him ‘fit to work’ and now he has no car, next to nothing to live on and no way forward.

Jenny lives in remote rural village and depended on her car to reach local shops and her friends. But she was told she no longer qualified for mobility benefits and her car was taken away immediately. She was stranded, with a wait of many months before her appeal could be heard. Even if she is successful, she will have to apply and pay for a new car on the Motability scheme.

The biggest tragedy of all is that society will no longer be able to benefit from our skills, experience and insight. Amongst disabled people there are talented artists, scientists, researchers…you name it, all wanting to contribute.

I was lucky, because I had the support of benefits, in particular a car, all my adult life. It meant I could go to university, gain professional qualifications and become a respected consultant and trainer, in demand nationally. It meant I could pay taxes!

If you think that is how it should be, NOT being reduced to utter dependency, please sign this petition. The current situation must not be allowed to continue. Together, we can force the government to rethink these harsh and unnecessary cuts.

RIP Karen Sherlock

From one blog to another, please click the title to go to the post I'm quoting. I don't feel it's my place to write about anothers death. It makes me everso sad to learn of it though.

"Karen embodied our fight in almost every way. She was desperately ill. Her kidneys were failing, putting a huge strain on her body. [..] She spent her last months fighting for the "security" of £96 a week and the reassurance that it couldn't be taken away."

I invite you to start a journey with me.

It would seem that I may have been short changed by the DWP. As anyone who's been following my blog will know, I am fairly familiar with the benefits system having researched it for the last year. However, it seems that I may have missed something blindingly obvious, which has just been pointed out to me by someone on one of the benefits groups.

Let me lay it out as simply as I can:

• Since 2001 my National Insurance has been paid by me, out of 'pocket money' my husband gave me over the years.
• As such, when I started receiving ESA last April I should have been put on Contributions Based ESA. (I need to check whether I was or not).
• Contributions Based ESA is not means tested. They do not take into account the income of your partner, or your savings.
• Contributions Based ESA, is however, limited to 12 months.
• In November of last year I received a divorce settlement. At the time I was uncertain of whether it would affect my benefit, since it was more than £16,000, so I phoned the DWP for advice.
• I was informed that any savings over £16,000 meant I was disqualified from receiving ESA, but I would still receive my NI stamp.
• I discovered a few months ago that when I made that phonecall they closed my claim to ESA, which means that since November my NI stamp has not been paid either.
  
• The person I spoke to did not tell me they were closing my claim. I received no mail informing me that my claim was closed. I received no mail informing me that they would cease paying my ESA either.
  
• When I was informed, a few months ago, that my claim had been closed in November, they also told me that I should have been providing bank statements to the DWP since November, showing my spending. (This confused me).

There has been a mistake somewhere. Either I was not on Contributions Based ESA, which I should have been, and that is why my claim was closed ... or the person I spoke to at the DWP incorrectly assumed that I was on Income Related ESA and closed my claim when they should not have. I suspect the latter happened, as that would possibly explain why I received no mail (ie, someone covering their tracks just made the claim disapear).

So, my job now, it seems is to:

1. Check whether I was on Contributions Based ESA or Income Related ESA to start with.
2. Assuming I was on Contributionas Based ESA, I will need to collect together evidence for the DWP to claim back payments from November until April (as my claim would have been ceased in April anyway). With advice, the evidence I need is as follows:

• a timeline of date of claim,
• the decision letter,
• the time I was in receipt of payments and how much,
• when payments were stopped,
• my NI record showing payments not made,
• date received divorce settlement

Of these the only information I do not have is my NI records, but I am fairly sure I can get those from the DWP.

So, I invite you to follow me on this journey. I have no idea of what is to come, whether it will be very simple, or whether I will get absolutely nowhere. Let us see!

Hatred of those on benefits; discuss!

When I heard about what had happened to the Philpotts, my reaction was not dissimilar to that of Carole Malone, though for completely different reasons. I was shocked obviously, and sad that anyone would lose one child to fire, let alone six. Like Carole though, I was almost not surprised. Over the last few years the government and media have been stirring up so much hatred against those on benefits, that when someone with 17 children, living purely on benefits comes to the publics attention, it isn't all that surprising that one person, out of the thousands or millions that have a grudge against such people, 'takes action into their own hands'. Of course, we don't actually know that is what happened, because as yet they don't know who caused the fire. This is the opening to the article I've linked below though. An article in which it discusses this hatred.

Owen Jones "Hatred of those on benefits is dangerously out of control"

The media have mislead people so much over benefits that everything is now completely misunderstood, even the simplest things. I've read comments on articles recently where people simply cannot comprehend the difference between Disability and Sickness. People seem to think that if someone is a little bit sick they suddenly receive a free car for the rest of their lives. My own father, when I told him of the predicament I was in a few months ago, responded by telling me that I would be fine as I could claim £26,000 a year in benefits and have a council house. Worse than this though, some journalists are deliberately misleading the public (Rob Liddle, to name one).

I want to throw my toys out of my pram and declare that it isn't fair. I never chose to be ill. I certainly did not choose to lose everything I had in life. I don't want to be unemployed or struggling. Sometimes, these people deliberately stirring up hate against me is more than I can take. I don't see why I should be ashamed of who I am. Why should I dread meeting new people because of the inevitable question 'so what do you do?'.

I often wonder how anyone can believe the ridiculous claims made in the media. I cannot personally imagine hearing a 'fact' and not questioning it or thinking about it. It seems that people just accept these things at face value though. If they actually stopped to think about it surely they'd realise it's all rubbish. How can they possibly think that ALL families on benefits have countless children, a free car, a free house, plasma televisions, Blackberries, Nike's, etc? Surely the evidence before them contradicts what they are being told? When they drive through drab council estates who do they think lives there? A class even 'lower' than the 'lowest'?

I'm lost in working out what it is that they're trying to achieve. I understand that they are demonizing those on benefits ... all benefits, not just disability and sickness benefits ... with the aim of getting people on side, so that decreasing benefits actually goes down well with the general public. I understand that they wish to decrease benefits to make what is truthfully a minute saving in the grand scheme of things. But what do they think is going to happen? The truth of the matter is that people living on benefits are already struggling to make ends meet. An amazing amount of people are simply living on Housing Benefit and Job Seekers Allowance. Housing Benefit pays only 80% of their rent, so a huge amount of their JSA goes on paying off the rest. They receive £67 a week; this has to pay the rest of their rent, their bills and living expenses. It's not easy. If this amount if cut further they will be pushing people over the edge. As it is many people are relying on the generosity of others; on handouts, spare rooms, free meals. Not everyone has generosity available. People will starve, or freeze. They are essentially pushing people to suicide, or at least that is the way I see it. I'm sure they realise that, and I'm sure that the thought of claimants decreasing, no matter what the cause, makes them quite happy. It decreases that 'class' after all.

Last year, when I was too sick to get out of bed, too brain fogged to work out how the benefit system worked, one of my friends said to me 'Do you think they'll just let you rot?'. He truly believed that the system has the best interest of every individual at heart. But how does the system magically know when I cannot do anything for myself? How can they know there is one person out there who is totally alone, without internet access, unable to get out of their house; someone who simply has all usual avenues cut off? They will let you rot. They will, and they do.

So that's me. I've said my piece. I am glad and a little encouraged to see The Independent covering the hatred of those on benefits in this manner, and I hope that others start to finally see the light too.