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.

Explaining the ESA Process

I had an appointment with my GP the other day. I noticed it written in my diary the day before, and for the life of me couldn't remember what it was for. It was the first thing in the morning however, too late to cancel it, so I went anyway. I sat down. He asked me how he could help. I looked at him and said 'I have absolutely no idea why I'm here'. He's a really nice GP, so thankfully wasn't cross at me. I hadn't wanted to not turn up, which he understood. We had a short chat, and I left, shortening the waiting time for the patients after me.

During this chat I mentioned to him that my ESA application had been turned down. They turned it down because they say I don't have enough National Insurance Credits. I may explain my personal case in another post at some point, but it isn't relevant to this post. He hadn't heard of National Insurance Credits being involved in ESA, so was thoroughly confused. I came home and wrote up an explanation of how the ESA process works for him. I left it at the surgery the following day when I had a blood test. The next day (I live at that surgery) he chased me out of the surgery to thank me for the description. He had found it very comprehensive, and had copied it for the other GPs. It has therefore occurred to me that other people may also find it useful. 

Below, you will find a (hopefully) simple explanation of how the ESA process works. If you spot any mistakes in it, please leave a comment and I'll make amendments.

Dear GP,

Since we were discussing ESA yesterday I thought I would put it in type for you so that the process is clearer. I hope it is of some help.

There are different phases to ESA.

The first phase starts when you give someone a ‘Fit Note’. If they are not in work, so can’t use it to claim statutory sick pay from their employer, they phone the DWP (Department for Work & Pensions) and fill in a form called the ESA1 over the phone with a DWP telephonist.

The DWP telephonist will establish whether your patient is suitable for:
•    Contributions Based ESA, or
•    Income Related ESA

To qualify for Contributions Based ESA your patient needs to have at least two years (in the last tax year) National Insurance Credits.

If they do not qualify for Contributions Based ESA, they may apply for Income Related ESA; but this is means tested – savings and partners income are taken into account.

If they qualify for neither, they can “claim” Income Related ESA without receiving any payments. The DWP will pay their National Insurance Stamp while they do so, so that two years later they can apply for Contributions Based ESA again (or sooner depending upon their shortfall).

When  someone succeeds in claiming Contributions Based ESA they are only able to do so for 12 months. After those 12 months are over, there must be a gap of at least another 12 months before they try to claim it again.

During this first phase of ESA they receive £70 a week basic rate. (I think, it may have changed again). They will then be sent the next form, the ESA50 (the one that gives everyone nightmares). This is the start of the second phase.

This is also the form I’m used to helping people with. If this form is filled in well enough, with enough supporting evidence, people can be put in the appropriate group (even the Support Group) without having to go for a medical. This is why I prefer GPs to give people supporting letters with their ESA50, rather than waiting for it to go to appeal.

The ESA50 is time limited; it must be filled in, and evidence gathered, by a certain date. Once the DWP receive it, a Decision Maker looks at it. (They have 20 minutes to go through it and the evidence, so the format in which the form is filled in is important). The Decision Maker will decide whether your patient needs to go for a medical, or whether there is enough convincing evidence to be put in one of the ESA groups; and if so, which group they go in.

Otherwise, your patient is then summoned to the Work Capability Assessment. A nurse, doctor, or other health professional will go through a series of questions and exercises with them to assess their abilities. Unfortunately they use a tick box system on a computer which does not allow for much flexibility, and thought they can input their own answers they usually do not. They have an unofficial target of 20% that they must fail on the assessment.

Once the WCA is over, the ESA50, your patients supporting evidence, and the results from the computerised assessment, once again go to a Decision Maker. A decision will then be made over whether your patient is fit for work, or whether they belong in the Work Related Activity Group (WRAG) or the Support Group.

People placed in the WRAG are expected to attend Job Centre interviews, and to participate in activity that moves them towards the goal of returning to work. This can mean going for counselling, doing voluntary work, or simply attending relevant medical appointments. It depends upon how understanding of their condition their advisor is.

People placed in the Support Group are not expected to return to work in the near future. They will be assessed again at some stage however. (At the moment they are assessing some people every three months).

I believe, but could be wrong, that if someone is on Contributions Based ESA and placed in the Support Group, that the year limit does not apply.

It is at this stage, that if your patient is found unfit for work, that they can appeal. They must appeal straight away, otherwise their payments will be stopped. Their case will go back in front of a Decision Maker again to assess whether a wrong decision was made, or whether the case should go in front of tribunal. Last time I went through the process mine was overturned at this point, so it does happen, though it’s rare.

At this stage I get lost. I’ve not helped anyone go through tribunal yet, because everyone I’ve helped has gone straight into the Support Group. I understand it’s an extremely stressful process, that they must gather even more evidence, that it’s best to have someone accompany them, etc.


So, to understand what happened to me [..].

Kind regards,

Olana

Harvey's Hammocks

We recently discussed an online store that has been set up by an M.E. sufferer because the benefits system has failed her. Today we have an M.E. (and Fibro) sufferer who has also set up an online store. In this case she has set up the store because she wants to feel that she is still making a contribution to society. As with many of us, she feels that being ill has taken away pretty much everything that her life was previously. She's building something, moving forward, out of a horrible situation. 

Harvey's Hammocks

Harvey's Hammocks is a small animal hammock shop run by a Fibro and ME sufferer.

Harvey's Hammocks provide a wide range of hammocks in lovely soft wools, each is washable, can be easily repaired if chewed, and has a lot of stretch. From the basic square hammock, to multi-pocketed creations, they even offer a customised hammock for any who are interested.

Offering an easy solution for genuine rescues as well, we provide a massive 15 hammocks for just £30!

I spend alot of my time bed ridden due to ill health and found most of my former hobbies were now impossible. While the Fibro and ME has taken alot from me I have been lucky in that my hands are mostly unaffected unless it is a severe flare up. By using support bandages and strapings to help with the pain and the shakes I have found I can crochet.

While I can crochet, the big projects like blankets and that, are beyond me as I have no strength. So I found myself looking for something to do. I have a group of pet rats, and we all know rats love hammocks, but being ill affording the ones on the market was becoming expensive as they were hard to repair when broken and my rats love to "customise" their hammocks.

I tried different sizes, shapes and styles and found what worked and what didn't and soon was enjoying making hammocks of all types that I had too many. This surplus went out as "testers" to friends and got a positive feedback. So wanting to feel like I make a contribution to life and not feel so useless and isolated as ME and Fibro can do to you, I decided to open up an online store as a trial.

There are of course a few things that may need explaining. Rats make lovely pets, so if you were horrified at the thought of pet rats I really do recommend that you contact her to ask about rats as pets, because you will be very surprised at how amazing they are. A hammock for a rat is not quite like a hammock for a human. They usually consist of a square of fabric with some form of hook attached to each corner, which can then be suspended inside a cage. When she says that rats like to customise them, she means that they chew holes in them. I would also like to point out to readers that other species appreciate these too, so if you have ferrets, rabbits, cats, mice, hamsters, degus, etc, that you may be able to support her work. She will crochet to order!

A little rant about JSA

In regards to benefits I have mostly written about Employment & Support Allowance (ESA), possibly a little on Disability Living Allowance (DLA), and of course the frustrations of our government and ignorant journalists. As yet, I have not had reason to touch upon Job Seekers Allowance (JSA). It is because I reported, on Facebook, a letter for my doctor regarding ESA, that JSA came to my attention. A friend of mine voiced her frustrations over her experience of the system. Her first reaction made me think that she had fallen for all the media hype, that sick and disabled people do not deserve the benefits they struggle to receive. I was wrong. This is her story:

So, I'll take you back to September 2010. I had just finished my PhD (the end of 7 years at university) and had been looking for jobs all through the summer as the end of my funding approached. I was still with my ex at that point. I had set money aside in the event that I had difficulty finding work, and made these saving stretch far further than I had anticipated. In the September of 2012, I found a part time job in a lab and took it. This ran up until Christmas of that year when my temp contract wasn't renewed due to funding. While I was working in the lab, I took on a second part time Christmas temp shop job to top up my income, and to take me beyond the end of the lab job. When my lab job finished, I rang up the Job Centre to begin claiming Job Seekers allowance as my shop job was under 16 hours a week at that point. I gave details of all my outgoings, including my mortgage etc and I was told that as I hadn't worked continuously for the set amount of time (2 years I think it was at the time), I hadn't made enough NI contributions and so would have to apply for income based job seekers allowance.

In the November of 2012, my ex and I separated but continued to live in the same property until we sorted out where we were each going to live.When my lab job finished (mid December), I rang up the Job Centre to begin claiming Job Seekers allowance as my shop job was under 16 hours a week at that point. The following week I got 17 hours work, and was told by the Job Centre at my assessment that because I had gone over by 1 hour, my claim would have to be terminated, and I would have to reapply again when the time was appropriate and when my hours fell again.

This didn't happen until January when my temp shop contract was also terminated. At this point I rang the Job Center back up again, and had to start my application again from scratch. I had to explain that I was still living with my ex, but that we were financially independent of each other. They held back my benefit until they had sent a representative out to check our living arrangement. This was awful, and made me feel like I was cheating the system in some way when I knew I wasn't. We "passed" this assessment and I was awarded my Income Based Job Seekers Allowance at a mere 8 pounds a week due to the income from my shop job (which was low as it was). I also received council tax benefit (for my half of the council tax, not my ex's half) which was a massive relief and did take a small amount of financial pressure off my shoulders.

At my first visit to the Job Centre to sit down with someone and discuss what jobs I could apply for, I sat down at the desk and showed the man my CV and my qualifications. He looked at my CV and said he had never had to deal with anyone with a PhD before and didn't know how to help me. I had to tell HIM where scientists applied for jobs. He then MADE me apply for a job in Bridgenorth (a long way from Solihull) before my next signing on, the pay from this job was low to say the least, and would have cost me a fortune in fuel, and commuting time too. I simply would have not have been able to live off the wage after paying for fuel. But I put in my application, with the same amount of effort as any other job, and waited. I heard nothing from the company I had applied to.

I got my final pay slip from the shop job at the end of January which I had to take and show to the Job Centre. When they saw this, my massive 8 pounds a week was reduced to zero. The day I received the letter stating this, I was thankfully offered a full time job for 14 months, and had pleasure in telling the Job Centre this, and that the job was not obtained through any help from them.

Now something that I was often asked was why couldn't I claim the full amount of Job Seekers Allowance when a lot of other university leavers could? Simple: many university leavers return to live at home with their parents, or live in rented accommodation where they have no other income, and their housemates do not provide for them financially.

The difference for me? I had a mortgage and I feel I was being penalised for getting my foot on the property ladder and working hard at university to get myself somewhere.

And as for the experience of the Job Center itself? Demoralising. As I sat waiting to be seen, I overheard young mothers boasting of their life on benefits, and how they deliberately put in bad job applications where they bothered to put them in at all, so that they didn't get offered interviews and could continue to claim benefits while they "applied" for jobs. Where they openly admitted to the staff that they didn't bother applying for posts, they were simply told "oh right".

My experience with the Job Centre and the benefits system made me fear for the future. What if this happens again through no fault of my own? Will I get support again? Hopefully now that I have NI contributions, yes I "should" get help short term.

Not so different from some of the problems people on sickness benefits have, is it!?! I had a similar experience myself, in 2001. I finished university in August 2000. I went straight into a job where I was severely bullied by someone who thought she was my boss, but was not. It was a complicated situation; she was sleeping with the MD, so my actual boss could not do anything about how she behaved to me ... or all the other staff before me that she had scared away. I eventually gave up the job after nine months (there had been a book on how long I would last under he apparently - I outlasted all the bets). I tried to claim JSA, but was told that because I had a history of quitting jobs I could not claim. There was no work around at all, so I temped for a few weeks. I handed my CV out to everyone I could think of; went around the shopping centre giving it to all the stores. I eventually got a job in a computers games store. I have never loved work as much as I did there. However, my health was deteriorating with the onset of M.E.. My boss basically told me I'd be better off leaving, so I did. At the time I had never heard of sickness benefits. I went to the Job Centre. I had taken out a £4000 loan a few months previously with the aim of starting up a small business. The Job Centre told me that I had to live on this loan until it ran out, and then I could apply for benefits, BUT that I would not be entitled to JSA if I was ill. The person I spoke to didn't tell me that I'd be entitled to sickness benefits, or that they even existed. So I went straight to my letting agent; paid off the remainder of my rent for the year, all of it. I did my best with the little money I had left after that, but my house-mates ended up supporting me most of the time. Something they should never have had to do.

The system disgusts me. It does not support the people who genuinely try to get ahead in life. Those who try to build a future for themselves, like my friend above. It doesn't support people like her or myself who are simply trying to fill in gaps between jobs. No one explains to us about National Insurance Credits until after it's too late. No one tells you that you can only claim Job Seekers Allowance if you have been sacked; if you quit a job of your own volition you aren't entitled to anything.

My friend is right. There are too many people who think that it is their right to live as they please, with no responsibility to the country or society. They think that they should be entitled to have money, just for being alive. Why should they do anything to actually earn it? I am well aware that this is the view that many people hold of people on sickness and disability benefits, thanks to the media, but people with half a brain should be able to realise that people on sickness benefits are thus because they CANNOT work. The people my friend describes CAN. They choose not to.

This country is a seesaw. On one end you have the tax payers. On the other end you have people on benefits. We are very genuinely at risk of the benefits end hitting the ground. That is what those who choose to not work fail to understand.

Social Services Stole my M.E. Child

Sonia Poulton is searching for a family.

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

If you know such a family, please contact me and I will pass on your details to her. Hopefully she will give me a better way of contacting her yourself in the near future, but for now, that's it.

Sonia, in case you are unfamiliar with her work is a UK journalist who has been working extremely hard to bring the suffering of people with M.E. to light. She totally gets it, which is very rare for anyone who doesn't have M.E., and she has the voice, and is in the position, to do something about it. An absolutely awesome lady. She's also been working hard on illuminating the problems with the benefits system. She doesn't have to do either of these things, but has chosen to. So, if you can help with her search, please do.

Her full post (on Facebook) was actually as follows:

I have a problem and I'm adhering to the school of thought that says if I share it then I should also halve the burden it is causing me, so here goes...

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

That precise requirement is what I desperately need in order to fulfil the demands of producers on a TV news report I am working on.

Some people are not happy that we need that type of extreme example - and I understand why - but in order for the public to 'get it' the media frequently has to SHOUT an issue. This is one of those times.

This report is designed to shriek so loudly that those watching it will have no alternative but to wake up. It will not portray ME as only worthy if it is extreme but it needs to shock people out of the stupour of believing it's not a serious illness. It is. It can, and has, killed. How much more serious does it need to be?

So far I have been unable to get the family we need. I have other families, with less troubles, but I need others.

It's not that these families don't exist - sadly they do - but they have been filled with so much fear and anxiety about having their child taken away that they are scared to speak up about it, even anonymously. Which is super sad, really, because it means that they are unable to help those who are enduring that misery right now.

So that's my very long way of explaining I have a problem and if anyone can help in any way, either by knowing a family of this description or re-posting this status in any relevant places, I would be grateful.

We need to be able to show the UK how people with ME are being treated and unless I can get the example required then I fear it will not happen. Thank you.

The Funky Orchard

There are many people with M.E. who are not in receipt of benefits. There are different reasons, though the most common is that M.E. is not a well understood illness. When someone writes on their ESA or DLA form, or even their blue badge application that they have M.E., the assessor doesn't understand what that means. Unless the applicant has had help from someone who understands both the benefits system and M.E., they are usually screwed. As such they are turning to alternative measures to try and scrape enough up to live by. The Funky Orchard is just one such example, I will let her tell you her story herself though, as it is a little different.

I have just set up an online clothing business called The Funky Orchard.

I could not receive ESA because my husbands earnings were too high. The DWP were supposed to be crediting my NI, but did not. So when my husband left, and I reapplied for ESA properly, I could not get it due to the fact that I did not have enough NI.

At first I was very scared. I was living on my savings, extremely aware that they would run out within a year or two. I didn't know what to do, or who to ask for advice. Then one day I was looking for a specific item of clothing online and suddenly thought "This is so hard to find, yet so many people would like it. Why don't I sell them myself!?!"

Soooo, I have thrown my savings into buying stock. Beautiful stock.

I aim to stock the clothing that is hard to find on the high street, yet so many people seem to yearn after. Alternative styles; goth, punk, hippy. In particular I am hoping to stock more larger sizes, as plus sized clothing is even harder to find.

At the moment I have some absolutely awesome items in stock. For example, we have Sari Skirts; skirts that have been made from sari fabric. They are in a variety of colours, as you can see from the picture of our stock cupboard. They are double layered, the fabric behind being a totally different colour to the fabric in front, giving an amazing iridescent affect when the skirt moves.

We also have some fantastic medieval styled tunics. They're perfect for people who like the pagan, or goth look, can be worn as a top or a dress, and for either casual or smart occasions.

I have both a website and a Facebook page. So please, come and 'like' us on Facebook, and have a look around the website :)

I need to clarify a few things from the beginning of her statement. NI = National Insurance. She was unable to claim Employment & Support Allowance Income Based because it is means tested; her savings were just above the threshold allowed. As such her only option was to claim Employment & Support Allowance Contributions Based, but because the DWP had stopped paying her National Insurance Credits without informing her, she could not claim this either. She can now pay NI herself for six months, and try to claim again. Meanwhile, hopefully The Funky Orchard will provide enough to live on. So please! Please support her; spread the word, and see if there are any items that you would like to buy for yourself or for someone else with Christmas coming.

Dating Disabled

Ok, I am sick and tired of the spam messages I keep getting; comments people try to leave on my blog with a link to their own website in the hope that it'll lead to an increase in visitors. Sorry folks, I never let such comments through. 

However, there is one I'd like to make a post for. Today someone left a comment saying that they would link to my blog from their website ... I'm not naive enough to believe that they will ... but their site is a dating website for the disabled. And you know what, that's something I think is useful and important to my readers.

I signed up to a dating website a couple of years ago, and the experience was absolutely horrific. If I did not write on my profile that I am disabled, when the people I talked to found out that I am, they accused me of leading them on. If I did write on my profile that I am disabled, I received messages from people either telling me I had no right to be on a dating website, or even creepier, from people who wanted to know all the details of my disability. It was no win situation.

I can see pros and cons to the concept of a disabled dating website. From personal experience I can tell you that two disabled people in a relationship together can be twice as difficult as one disabled, and one able bodied. On the other hand though, who understands disability better than anyone else? Disabled people! My disabled friends are the most supportive. They understand. They relate. So yes, I advocate disabled dating sites. 

I would give one word of warning though. When you tell people up front that you are disabled, you are telling them that you are vulnerable. There are people who prey on the vulnerable. There are those who 'like the idea' of caring for someone, not always with the best intentions. Always tell someone where you are going, and who with. Always get pictures of the people you are going to see before you see them, share these with someone. Always take your phone, and keep it turned on; answer it if someone phones. Have a safeword that you can slip into conversation with a friend if you need help. That safeword can save your life.

This is the website that left a comment on my blog: YourDisabledDating.com

And here are a few more:
Dating4Disabled
Disabled Passions
Disability Match
Whispers4u