Monday 7 August 2017

Library

This is a library of information and files about the British benefit system. They are specifically aimed to help people with Myalgic Encephalomyelitis, Fibromyalgia, Post Viral Syndrome, and similar conditions, but anyone can access them.

Currently the focus is on Employment & Support Allowance, but Personal Independance Payment and Universal Credit information will be added and adapted as and when it becomes appropriate.

For those who do have the conditions these files and posts are aimed at, you can join our Facebook group for additional help.

We have experience with these forms, and are very happy to offer you advice. We also have a Helper System, whereby we can either check over your forms before you send them off, or help you to fill them in.

Because we specifically wish the group to remain on topic, we also have a social group where we can share woes and jokes:
(Note, it is not a dating group).

As documents and posts are added to the site, links to each one will be added below:


ESA:

- What is ESA? Explains ESA, Contributions Based ESA, Income Related ESA, Work Related Activity Group, Support Group, payment rates, and outlines the process of application.
- ESA50 Download tthe ESA50 (the long questionnaire) as a PDF
- Filling in the ESA50 A helping guide to completing the ESA application form. 
- ESA50 Example Answers for M.E. & FM This post goes through each question, suggesting M.E. and Fibro specific answers. You should hopefully be able to find answers that meet your circumstances here. 
- ESA Descriptors. Descriptors are used to score your application for ESA. 
- 3 Ways into the Support Group & the ESA Suport Group Descriptors. Meeting any one of these will place you in the Support Group. 
- Special Circumstances Explains in simple terms how you may be exempt from filling in the ESA50 and / or having to do the medical assessment (work related activity assessment)
- Regulations 29 & 35 This is the legislation to use if you should be exempt from filling in the ESA50 and / or having to do the medical assessment (work related activity assessment).
- The Physical / Mental Dilema Explains how physical and mental health symptoms are taken into consideration.
- I Can But I Can't Explains how to fill in the form for tasks that you can sometimes, but not always, do.
- Aids & Appliances Talks about how Decision Makers can assume the use of aids and appliances you do not own.
- Supporting Evidence Talks about how a decision is made, the different types of evidence, and discusses how to write supporting letters. 
- Assessment Centres Check that you will be able to cope with the centre you've been assigned.
- What to expect from the Work Capability Assessment If you're looking for the part about home medicals, it's right at the end.
- Questions You May be Asked A post copied from dwpexamination outlining the type of questions you may be asked, and how to understand them, in the Work Capability Assessment.
- Work Capability Assessment Centres A list of UK centres. 
- Work Capability Assessment List of Questions The list of questions you may be asked in the WCA and how to answer them. 
- Challenging a Decision. Describes what to do if you don't agree with a decision. Use the GL24 to Request a Reconsideration of to Appeal, for ESA, or DLA. 
- Work Related Activity - Explains what the Work Related Activity Group is, and gives ideas as to what you can do.
- Sanctions Explained What are "sanctions"? When are they applied? How much will I lose?
- Tidbits of ESA Advice Anything extra that doesn't fit in the other posts.
-
Document for requesting reconsideration Description's in the title ;)

Other Material:

- Work Capability Assessment described by Joyce Drummond Joyce Drummond is a nurse who worked for Atos performing assessments for ESA.
- SYMPTOM SECTION of the International Consensus Criteria for M.E. Useful to help fill in the ESA50
- International Consensus Criteria for M.E. Useful to include as supporting evidence if you have an official diagnosis. 
- Canadian Consensus Criteria for M.E. The symptom section, plus a download of the whole available. 
- 'About your illness and disability' example answer How I answered this section of the ESA50
- Why you need to save information you find Explains why it's important to save information you find that could help with your claims
- GL24 Word Version (Use this to request a reconsideration or appeal of ESA or DLA).
- GL24 PDF Version (Use this to request a reconsideration or appeal of ESA or DLA).
- Request for Reconsideration Example The document shows you the format I used to make a reconsideration request after I was turned down for DLA.


Wednesday 4 December 2013

Document for requesting a reconsideration

Below you will find an example document for requesting a reconsideration. This was my own document when requesting reconsideration for DLA. It's exactly the same format I would use for ESA (I just don't have my ESA one available to copy). 

When you receive the decision on your ESA, you should receive a document with it called the ESA85 - the 'explanation of reasons'. If you do not receive this, contact the DWP and request it as soon as you can. Once you receive this document:
  • Try not to let it get to you. Remember you're just a statistic to them, it's not meant personally. If it makes you emotional, leave it a day to come back to it.
  • Go through with a pen, marking each point you disagree with.
  • Create a document, type each point you disagreed with into it.
  • Go through your evidence, one piece at a time, checking against the points you disagreed with.
  • On the document, create a list of evidential statements, that disagree with the points you copied into the document previously. Name the piece of evidence, and quote the part or parts that disagree with their conclusion. (See my example below to understand this better).
  • Try to treat it as a business matter. Remain professional. Inserting emotion tends to rub them up the wrong way; what the outcome of the document is, is of no consequence to them, so appeal to them by making it as simple and easy as possible.



Address
Address
Address
Address

National Insurance No.: XX111111X


Date




To whom it may concern,

I’d like to bring a few points to your attention before I present you with my reasons for requesting a reconsideration:
1)    The Decision Maker who spoke to myself and my partner, told my partner that she had not looked at my evidence before making the decision. As such I would like to be sure that the Decision Maker who revisits my case does actually look at the accompanying evidence, please, particularly at the report written by Dr ### ####### whom performed the home medical for ESA.
2)    The ESA medical assessment (from which you have some evidence) was recorded; you are very welcome to have a copy of the recording to use as additional evidence should you believe this to be helpful – please contact me if so. Similarly, both my counsellor and case worker are independent witnesses whom are happy for you to contact them.
3)    This document has been dictated to my partner.

It was been stated that:
I can walk over 50 metres, slowly, in a reasonable manner.
•    I would like to refer you to the ESA Medical Report Form written by Dr ### #######:
  • Page 3: “Suffers with Orthostatic Intolerance – where standing or sitting up causes blood pressure to drop. Passes out due to this.”
  • Page 4: “Feels knackered on little exertion”
  • Page 4: “Seemed tired, exhausted”
  • Page 8: “Stood up with physical help”
  • Page 8: “Jerky body movements – said felt dizzy and unsteady”
  • Page 8: “ Walked few steps with unsteady gait”
  • Page 8: “Unable to stand still with eyes closed”
  • Page 8: “All reduced movements due to pain, weakness, stiffness”
  • Page 29: “Severe functional disability seems likely with mobilising”
•    I would like to refer you to my DLA Application Form:
  • Page 10: “Often bed bound and unable to go out”
  • Page 11: “Very slow: less than 40 metres a minute.”
  • Page 11: “I walk very slowly due to severe, significant, pain in my knees, pelvis, hips. I also have poor balance so unless I walk slowly I fall. I often use a wheelchair when outdoors due to severe fatigue.
  • Page 12: “I cannot walk without physical support.”
  • Page 12: “I would fall without physical support.”
  • Page 12: “I would injure myself without physical support.”
  • Page 12: “If I am well enough to go out without using the wheelchair I have to use a walking stick or link arms with another person”.
  • Page 12: “I would fall and hurt myself without support.”
  • Page 21: “Out in the community I am usually in a wheelchair”
  • Page 22: “My muscles are weak, I am in constant pain, my co-ordination is very poor due to constant severe fatigue.”
  • Page 22: “I cannot weight bear due to pain, fatigue, and carpel tunnel syndrome in my wrists.”
  • Page 22: “My last fall [before filling in the form] was April 25th.” (Please note, that is the date the form was submitted – I fall nearly every day).

It has been stated that:
I don’t need help to use a cooker, use kitchen tools, carry and lift safely, plan a meal, or motivate myself.
•    I would like to refer you to the ESA Medical Report Form written by Dr ### #######:
  • Page 4: “Struggles to wash hair and body due to pain.
  • Page 4: “Can’t do buttons”
  • Page 4: “Unable to cook”
  • Page 4: “ May need meat cutting up”
  • Page 4: “Unkempt. Very unkempt room and house”
  • Page 8: “All reduced movements due to pain, weakness, stiffness”
  • Page 12: “Reduced power grip – point weakness” (nb, I drop things)
  • Page 12: “Reduced power both arms – point weakness”
  • Page 29: “Severe functional disability seems likely with mobilising”
•    I would like to refer you to my DLA Application Form:
  • Page 14: “My concentration is poor”
  • Page 17: “I need a lot of encouraging and prompting to get out of bed as I am constantly exhausted.
  • Page 17: “I need reminding it is time to go to bed.”
  • Page 17: “Most days I don’t get up until between 11 and noon” [if I get up].
  • Page 17: “I wear the same clothes for days at a time as it is too exhausting for me to dress.”
  • Page 17: “I often wear my nightclothes or wear my day clothes to sleep in.”
  • Page 22: “My muscles are weak, I am in constant pain”
  • Page 23: “Somedays I cannot cut up food as my fingers are so weak and my wrists are painful.”
  • Page 23: “I need constant reminding to eat and drink as [..] it is too much effort.”
  • Page 24: “I cannot open blister packs / medicines due to pain and my fingers and wrists.” {And I cut my tongue on one yesterday).
  • Page 24: “I need reminding to take my medication as I am very confused by fatigue.”
  • Page 28: “I am too fatigued to cook.”
  • Page 28: “My concentration is very reduced and I forget I am cooking and burn food.”
  • Page 28: “ I cannot lift hot pans due to weak muscles and carpel tunnel.”


It has been stated that:
I do not need help getting in and out of bed, to wash and dry myself, to use a bath or shower, to dress or undress, to get up and down stairs, to move about indoors, to eat and drink, to take part in social activities, or to communicate.
•    I would like to refer you to the ESA Medical Report Form written by Dr ### ######:
  • Page 3: “has speech impediment at times.”
  • Page 3: “has difficulty in crowded rooms”
  • Page 3: “sound sensitive, light sensitive”
  • Page 3: “Does not get washed and dressed if not going out.”
  • Page 3: “Has shower sitting on ground – due to low blood pressure – a day before going out.”
  • Page 4: “Struggles to wash hair and body due to pain.”
  • Page 4: “Needs help to get dressed.”
  • Page 4: “Wears loose fitting clothes.”
  • Page 4: “Can’t do buttons.”
  • Page 4: “May need meat cutting up.”
  • Page 4: “Copes to move indoors holding furniture.”
  • Page 4: “Copes to go downstairs on her bottom.”
  • Page 4: “Copes to stand up once a day.”
  • Page 8: “Stood up with physical help.” [from bed].
  • Page 34: “Severe functional disability seems likely with mobilising.”
•    I would like to refer you to my DLA Application Form:
  • Page 10: “Wheelchair: cannot self propel due to severe debilitating fatigue.”
  • Page 12: “Even if I am well enough to go out without using my wheelchair I have to use a walking stick and link arms with another person. I would fall and hurt myself without support.”
  • Page 14: “I suffer from anxiety and need someone with me outdoors as I get distressed.
  • Page 14: “My concentration is poor and I can be in danger crossing roads.”
  • Page 17: “I need a lot of encouraging and prompting to get out of bed as I am constantly exhausted.
  • Page 17: “I need reminding it is time to go to bed.”
  • Page 17: “My body clock is very confused.”
  • Page 17: “Due to pain I need physical help to get into and out of bed.”
  • Page 17: “Most days I don’t get up until between 11 and noon” [if I get up].
  • Page 17: “I am in too much pain to often brush my hair.”
  • Page 17: “I wear the same clothes for days at a time as it is too exhausting for me to dress.”
  • Page 17: “I often wear my nightclothes or wear my day clothes to sleep in.”
  • Page 21: “I am often unable to move about indoors at all due to severe fatigue and pain.”
  • Page 21: “I am often unable to use the stairs at home.”
  • Page 21: “I avoid stairs as I have fallen.”
  • Page 21: “I need help to get into and out of my wheelchair due to pain and fatigue and being unable to weight bear.”
  • Page 23: “Somedays I cannot cut up food as my fingers are so weak and my wrists are painful”
  • Page 23: “I need constant reminding to eat and drink as I cannot bring myself to eat / drink as it is too much effort.”
  • Page 25: “I have panic attacks and cannot answer the telephone or deal with strangers.”


It has been stated that:
I am aware of common dangers, not at risk or harming myself, not at risk of aggressive or anti social behaviour, not at risk of falling, not at risk of neglecting myself, and not at risk of danger from dizzy spells or blackouts.
•    I would like to refer you to the ESA Medical Report Form written by Dr  ### ######:
  • Page 3: “Suffers with Orthostatic Intolerance – where standing or sitting up causes blood pressure to drop. Passes out due to this.”
  • Page 8: “Jerky body movements – said felt dizzy and unsteady.”
  • Page 8: “Declined squat – due to feeling unsteady and weak”
  • Page 34: “Severe functional disability seems likely with mobilising”
•    I would like to refer you to my DLA Application Form:
  • Page 11: “I also have poor balance so unless I walk slowly I fall.”
  • Page 12: “I would fall and hurt myself without support.”
  • Page 13: “Yes, I fall and stumble when walking outdoors.”
  • Page 13: “Poor balance, severe extreme debilitating fatigue and pain.” [cause me to fall and stumble].
  • Page 13: “I stumble constantly, and have a ‘proper fall’ every 1 – 2 weeks.”
  • Page 13: [I need help after a fall because] “I am disorientated, unsteady, and in significant pain.”

It has been stated that:
“I do not need help to sleep comfortably or to adjust bed covers”
•    I would like to refer you to the ESA Medical Report Form written by Dr  ### ######:
  • Page 4: “Can’t do buttons”
  • Page 4: “Unkempt. Very unkempt room and house”
  • Page 4: “Feels knackered on little exertion”
  • Page 8: “All reduced movements due to pain, weakness, stiffness”
  • Page 12: “Reduced power grip – point weakness” (nb, I drop things)
  • Page 12: “Reduced power both arms – point weakness”
  • Page 22: “My muscles are weak, I am in constant pain”
•    I would like to refer you to my DLA Application Form:
  • Page 29: “I awake in pain and cannot get comfortable.”
  • Page 29: “I get distressed during the night and ruminate on post issues of abuse in my life.”
•    I would like to mention that while none of the evidence says I need help to sleep comfortably, I never do sleep comfortably. Even sleeping medication and night pain meds (which you’ll find listed on the form and the ESA medical report) do not help me sleep properly.

It has been stated that:
“I am aware of common dangers, not at risk of harming myself and not at risk of anti social behaviour”
•    I would like to refer you to the ESA Medical Report Form written by Dr  ### ######:
  • Page 8: “ Walked few steps with unsteady gait”
  • Page 8: “Unable to stand still with eyes closed”
•    I would also like to refer you to the letter from Simon Painter, of MIND:
  • “The consequences of these traumatic events left Ms ##### terrified for her life and suicidal.”
  • “[..] severe and frequent panic attacks where she lost all sense of reality.”
  • “During these panic  attacks Ms ##### would self-harm; scratching, biting, and hitting herself: she would hide and frequently regain awareness in unfamiliar locations.” Note: Mr %%%%% has personally seen the wounds from these attacks.
  • “[..] feels at times that she ‘doesn’t want to be here anymore.’.”
•    She hasn’t mentioned it in her supporting letter, but I would like to suggest you call my case worker, ???? ??????, from DIAL, and ask her what happened the first time we met. I am not proud of such moments, but they happen with increasing frequency.

I hope you do not mind me asking that you do not telephone me this time. I am telephobic, as such receiving unexpected phone calls can cause an anxiety attack. This is mentioned on Page 25 of the DLA Application Form. I am currently left alone in the house during the day, which leaves me at risk of anxiety attacks if anything unexpected happens. If the phone call with the previous Decision Maker had been recorded, you would be able to hear a panic attack starting; unfortunately I’m told that no such recording exists. If you do wish to speak to someone who knows me, both ???? ??????? and %%%% %%%%%%% are willing to take a phone call from you.

Kind regards,



Name

Monday 7 October 2013

What is ESA?

ESA is Employment & Support Allowance. It was introduced in 2008 as a replacement for:
  • Incapacity Benefit
  • Invalidity and Sickness Benefit
  • Income Support claimed on grounds of sickness
It has been rolled out slowly, gradually reassessing those who have been claiming those benefits name above. If you are claiming one of those, you will be reassessed at some point, so it would be wise to be prepared.

Employment & Support Allowance is intended for people who are unable to work due to sickness or ill health. There are different types of ESA. It can be quite daunting trying to understand which to apply for.

 

ESA - Contributions Based

  • In order to claim Contributions Based ESA you need to have had an employer pay your National Insurance (Class 1 contributions) for the whole of the previous year. 
  • If you were in full time employment before becoming ill, this is the type of ESA you should apply for.
  • If you are in the WRAG (Work Related Activity Group - see below), on Contributions Based ESA, you will only receive it for a year. You can then apply for Income Related ESA (see below).
  • If you are in the Support Group (see below), on Contributions Based ESA, you are not time limited to the year.

ESA - Income Related

  • Income Related ESA is means tested. If you haven't been employed (do not have Class 1 contributions) this is the one you need to apply for.
  • The means testing takes into account your income, your savings, and any income and savings of a partner if you live with one.
  • It does not take into account your out goings.
  • Income Related ESA is not limited to a year.

 

WRAG (Work Related Activity Group)

There are a lot of misunderstandings over what the Work Related Activity Group is.
  • The Work Related Activity Group is for those who are expected to be able to return to work within a given time period.
  • If you are placed in the WRAG you will be expected to seek and partake in 'activity' that progresses your situation to being able to work again in the future.
  • This activity may be voluntary work, but it may also be attending therapy or specialist appointments - it depends upon how open and understanding the Job Centre Plus employee you work with, is.
  • It is imperative that the 'activity' you undertake does not cause your health to decline. You can use letters from your GP to guide them in how much they push you.
  • One of the useful bits of being in the WRAG is that having regular appointments with a DWP employee means there is a regular record if your health is declining.

It is NOT:
  • A group. You do not sit in a circle with other people as if you were in group therapy.
  • The Work Program.
  • Forced unpaid labour.

The Support Group

The Support Group is for people considered too ill to be likely to return to work in the near future.



Rates

The rates paid to those on ESA have changed since it was introduced, but I believe they have been frozen for the next few years.
  • £56.80pw is the introductory rate for under 25s.
  • £71.70pw is the introductory rate for over 25s.
  • £100.15 is the rate for the WRAG.
  • £106.50 is the rate for the Support Group.
Officially the introductory rate is only for 13 weeks. In reality the assessment process often takes a lot longer. When you are eventually placed in WRAG or the Support Group you should get payment at the appropriate rate, back-dated to the 13th week.

If you do not have appropriate National Insurance Contributions, and your household income is too high to place you on Income Related ESA, you will receive no payments - £0.00pw - but they will still pay your National Insurance Credits. (Credits and Contributions are not the same thing).

 

The Process Outlined

If you are employed, and become severely ill:
  • you can self certify yourself as ill for one week.
  • a doctor can then sign you off work for as long as they consider you need to be off work.
  • you send the the sick note (called a 'fit note' since 2010) you are given by the doctor to the DWP in order to receive Statutory Sick Pay from the government. (Statutory Sick Pay is £86.70).
  • you can claim Statutory Sick Pay for 28 weeks 
  • the DWP may ask you to complete the ESA1 when you send in your first sick note. You don't have to (until 28 weeks); basic rate ESA is less than Statutory Sick Pay.
You do not have to leave work because of sickness. Some employers will create an agreement with you whereby your position is held open for you should you be able to return to work in the future. You will no longer receive payment from your work place, but will receive ESA payments from the government, whilst still holding a contract with your work place. You are in a more secure position if you can make this arrangement with your employment, than if you resign.


If you have been severely ill for a few years, but haven't claimed ESA yet:
  • you can also submit sick notes from your GP to the DWP for 28 weeks, as described above,
  • or you can telephone the DWP and fill in an ESA1 form over the phone.


Once you have completed the ESA1:
  • You will be sent the ESA50 form to complete.
  • When you receive the ESA50 you will be given a three or four week time limit in which it must be returned. It is advisable to be prepared for this form before you receive it, and have evidence lined up to send with it.
  • Once your form and evidence has been returned, it will be briefly assessed as to whether you require a Work Capability Assessment (the WCA - otherwise known as "the medical").
  • Most people are invited to the WCA, but some are placed either in the WRAG or the Support Group on the strength of their form and evidence.
  • If you are invited to the WCA and do not attend, your application for ESA will be declined.
  • In the WCA you will be assessed by a doctor, a physiotherapist or a nurse. They will make a recommendation as to what they believe the decision on your case should be.
  • A Decision Maker will then look at your form, the evidence you submitted with it, and the data collected in your WCA, and make a decision over which group you should be placed in, if you should receive ESA at all.
  • You will receive a document from them informing you of the decision. You should then start to receive the higher rate of pay, and any back pay that has accumulated.
  • If you disagree with the decision you can either request a Reconsideration or go straight to Appeal.
  • If you request a reconsideration another Decision Maker will look at all your evidence again.You can write to them explaining why you disagree with the decision, but you do not have to.
  • If you ask to go to Appeal, another Decision Maker will look at your case (Reconsideration) anyway.
  • If the decision is not over turned at this point, you will eventually go before a tribunal panel to plead your case.

Filling in the ESA50

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

Having help through the process makes it a lot less stressful. Make sure you pick the right person to help you though. A friend of family member is probably not the right person, unless they understand how the DWP operates and what a Decision Maker will be looking for. There are a number of organisations who may be able to help you. A few such organisations include:
  • The Citizens Advice Bureau
  • DIAL
  • Mind - The Mental Health Charity
  • the Civil Legal Aid Agency

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

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


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

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

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

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

First Session

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

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

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

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

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

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

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

 

Second Session

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

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

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

For each question, consider these things carefully:
  • severe discomfort.
  • pain.
  • breathlessness.
  • extreme fatigue.
  • repeatability.
  • reliability.
  • safety.
If you can do the activity, does it cause you discomfort, or severe discomfort?
If you can do the activity, does it cause you pain?
If you can do the activity, does it make you breathless?
If you can do the activity, does it cause you fatigue or extreme fatigue?

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


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

Third Session

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

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

1. Moving around and using steps
State whether:
  • you use a wheelchair, or walking aid.
  • you have any physical problems with your hips, legs, knees, ankles, or feet.
  • you suffer from pain or discomfort in your legs.
  • you know why you suffer from that pain or discomfort.
  • you have problems with walking, for example, you stumble or fall, or have balance problems.
The answer from my form:
"I use a wheelchair for long outings, and a walking stick for shorter walks. I have Hypermobility that affects my hips and knees with a lot of pain. Fibromyalgia and sciatica also cause pain in my leg muscles. I can never walk any distance without significant pain and discomfort. I suffer ticks that cause me to stumble and fall, sometimes as frequently as once a minute (I'm soon having an MRI to pinpoint the cause of these ticks)."


1. Going up or down two steps
State whether:
  • you use a wheelchair, or walking aid.
  • you have any physical problems with your hips, legs, knees, ankles, or feet.
  • you suffer from pain or discomfort in your legs.
  • you know why you suffer from that pain or discomfort.
  • you have problems with walking, for example, you stumble or fall, or have balance problems.
Yep, I'm asking you to repeat things. (The more a Decision Maker sees it, the more likely it is to sink in).

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


2. Standing and Sitting
State whether:
  • you use a wheelchair, or aid for remaining in a stationary position.
  • you have any physical problems with your hips, legs, knees, ankles, feet, or lower back - even your arms if relevant.
  • you suffer from pain or discomfort in your legs or lower back.
  • you know why you suffer from that pain or discomfort.
My example:
"I suffer discomfort remaining in a stationary position, which at times can cause me to pass out (I recently passed out in the post office queue) I can never remain standing in a stationary position for more than 30 seconds without experiencing this discomfort. The stick I walk with has a seat on it, so that I can avoid standing in queues. (I am waiting for an appointment at the Balance Clinic to test whether I have Postural Tachycardia Syndrome). This problem also means I need to have my feet raised when sitting, though I can sit for a few minutes being affected.

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



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

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

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


4. Picking up and moving things
State whether:
  • you have problems holding your arms up to the sides.
  • you have problems with coordination.
  • having problems with reaching affects your ability to pick up and move things.
  • you are limited in the amount of weight you can lift.
  • why you suffer that limitation, if you know why.
My example:
"I would struggle to lift both arms to lift the box in the example, because of the probably Postural Tachycardia Syndrome causing me to become light headed when I raise either arm. On my very worst days extreme fatigue affects my ability to lift objects."


5 Manual Dexterity (using your hands)
State whether:
  • you have any physical problems with your hands and/or fingers.
  • you suffer from pain or discomfort in your hands and/or fingers.
  • you know why you suffer from that pain or discomfort.
My example:
"Due to Fibromyalgia I suffer agonising pain in my fingers and hands, approximately one in four days, therefore have problems pressing buttons, picking up objects, typing, using a computer mouse. I have Carpel Tunnel Syndrome in both hands which causes shooting pains in my hands. The injection to treat Carpel Tunnel has cause further problems when any pressure is placed on the thumb of my right hand."


6. Communicating with people
State whether:
  • you have difficulties with speech.
  • you have difficulties holding a pen, or writing.
  • you have difficulties typing on a keyboard.
  • you know what causes those difficulties.
  • you have cognitive difficulties that affect your ability to construct sentences.
My example:
"Fatigue often causes my words to become confused and muddled up, and my speech to be slurred. This causes problems with conveying messages. People often assume I'm drunk."


7. Other people communicating with you
State whether:
  • you have a problem hearing.
  • why you have that problem, if you know.
  • you have a problem with your sight that affects your ability to lipread (if you've a problem with hearing).
  • you have problems reading.
  • you have a cognitive problem that affects your ability to understand people.
My example:
"I suffer from constant tinnitus that fluctuates in volume depending upon how fatigued I am. Fatigue affects my ability to follow conversation. I also suffer a lot of sensitivity to sound that causes significant headaches, as I wear earplugs - which of course then means I cannot hear people speaking at a normal volume."


8. Getting around safely
State whether:
  • you have a problem with your sight.
  • you have a guide dog, or need a person to guide you.
  • you wear glasses or use contact lenses.
  • you have a cognitive problem that affects how you understand what you see.
I don't have a personal example for this, but for the sake of argument:
"I have tunnel vision which affects my ability to judge what is happening in my surroundings. This causes me problems with tasks such as crossing the road, and means that I cannot drive."


9. Controlling your bowels and bladder and using a collective device
State whether:
  • you suffer urinary incontinence during the day.
  • you suffer urinary incontinence during the night.
  • you suffer fecal incontinence during the day.
  • you suffer fecal incontinence during the night.
  • you use incontinence pads or something similar.
  • you use a collecting device.
  • you have problems getting to the bathroom in time at night.
  • you have a colostomy, an ileostomy, or a urostomy.
  • you have problems getting to the bathroom in time at all.
  • you have to discard clothing because of these problems.
  • the frequency with which you need to discard clothing.
I also suggest:
  • you suffer with irregular heavy periods.
My example:
"I suffer IBS. During the loose stool phase I often have accidents. During the constipation phase I use Movicol, which causes extremely loose stool, and again, I often have accidents. I also suffer with very irregular heavy periods, which make a big mess when they arrive; I'm usually unaware that it has happened until someone brings my attention to stains on my clothing. I usually need to discard at least one pair of underwear per month."

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


10. Staying conscious when awake
(This is where you explain about brain fog).
State whether:
  • you pass out.
  • you black out.
  • you have fits.
  • you suffer Diabetic hypos.
  • you remain conscious but lose awareness.
  • you fall asleep unpredictably.
  • you know what causes the above.
  • you know how regular these are.
  • you suffer from brain fog (cognitive dysfunction) - and describe it if you do, as it isn't a particularly well recognised or understood symptom.
My example:
"Due to probably Postural Tachycardia Syndrome I pass out any time I have to remain standing in a stationary position. This also happens when sitting without my legs raised, though is less frequent. I have severe anxiety attacks, during which I lose awareness, often regaining awareness in unusual places and covered in self inflicted wounds. The severe fatigue caused by M.E. affects my ability to think and function to a degree that I am completely unsafe to be left alone."

Fourth Session

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

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

 

Fifth Session

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

For each question, consider these things carefully:
  • variability
  • repeatability.
  • reliability.
  • safety.
  • severe discomfort.
  • pain.
  • breathlessness.
  • extreme fatigue.
If you can do the activity, does your ability to do it vary.
If you can do the activity, how often / soon can you repeat it?
If you can do the activity, can you do it to a reliable level?
If you can do the activity, can you do it safely?

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

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

Sixth Session

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

11. Learning how to do tasks
State whether:
  • you are dyslexic (People with M.E. often suffer with 'acquired dyslexia').
  • you suffer from another learning difficulty.
  • your learning abilities are affected by fatigue.
  • your memory affects your ability to learn new tasks.
  • your ability to learn tasks varies depending upon the task.
My example:
"I have problems learning new tasks because of my memory. With simple tasks, I usually cannot remember how to do them when I have to try doing them for myself. With more complex tasks, by the time I am several steps into learning the task I cannot remember how it started."


12. Awareness of hazards or danger

State whether:
  • you have sensory problems that may affect this.
  • you have a problem that affects your coordination.
  • you suffer from loss of awareness at times.
  • you experience variations in your perception that may affect this.
  • your levels of fatigue may affect this.
  • your awareness of hazards or danger varies.
My example:
"Hypermobility affects my coordination, often leading me to bump into things without realising I'm going to. When I have anxiety attacks (two or three times a week) I lose awareness, regaining awareness in unfamiliar places. My awareness of hazards and danger vary according to how fatigued I am."


13. Starting and finish tasks
State whether:
  • you frequently fail to finish tasks you start.
  • you have sensory, cognitive, or learning problems that affect your ability to focus.
  • you don't take care of your personal hygiene as often as expected.
  • your ability to start and finish tasks varies.
  • you know the reason for the above.
Part of my example:
"I frequently fail to take care of my personal hygiene. For example, I usually shower once a week. I am unable to climb into a bath because of my lower back problems, but cannot stand in the shower because the probable Postural Tachycardia Syndrome. As such I have to sit down to shower. Washing my hair is a trail due to the issues I have raising my arms. I have problems with the water hitting me, because my skin is very sensitive, so I usually have a headache after a shower. Plus it's very exhausting, so I usually have to go back to bed after showering."


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

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



15. Going out
State whether:
  • you can cope with going out.
  • you need to rest or prepare to go out.
  • using any aids or appliances to go out has an emotional impact on you.
  • you need someone with you in order to go out.
  • your ability to cope with going out varies.
My example:
"Issues with PTSD mean that I cannot go out alone to somewhere I am not familiar with. I can cope with trips to places like the doctor's surgery, because I know there is someone I know at the other end who will make me feel safe. Going out in general causes high levels of anxiety, which in turns causes me severe fatigue."


16. Coping with social situations
State whether:
  • you suffer from social phobia or agoraphobia.
  • you can cope with meeting friends.
  • you can cope with meeting strangers.
  • you can cope with an official venue (ie, doctor's surgery or hospital).
  • you can cope with visiting a friends house.
  • you can cope with socialising in your own home.
  • you can cope with strangers being in your own home.
  • you can cope with officials being in your home.
  • any neurological or cognitive problems you have that affect your social interaction abilities.
  • any specific issues you have with social situations.
  • if your ability to cope with social situations varies.
  • you have any form of authority complex.
My example:
"Leaving the house makes me very anxious. I very much enjoy social activities when friends visit me, but visiting people elsewhere is a problem. Specifically, I become claustrophobic in crowds. I struggle with certain types of noise, needing to wear earplugs to cope. My partner recently took me to a bowling alley; I was already very anxious, but the noise in the place caused me a panic attack - when I regained awareness I was sitting on a pavement in an unknown location."


17. Behaving appropriately
State whether:
  • you have a behavioural problem that affects your behaviour towards other people.
  • people often misunderstand what you say.
  • you avoid social situations because of people not understanding you.
My example:
"When I'm fatigued I become impatient and snap at people. When I'm not fatigued people still frequently become upset with the way in which I communicate. I do not know why, but this problem is all the time."



18. Eating and drinking
State whether:
  • you need someone to cut up your food.
  • you need food liquidised.
  • you need someone to place food in your mouth.
  • you need someone to manoeuvre drinks to your mouth.
  • you take nourishment via a tube.
  • you having difficulty eating for any reason.
  • you particularly dislike eating.
  • you have an eating disorder.
  • you purge.
My example:
"With a Fibro flare my hands are in so much pain that my partner has to cut my food for me. With an M.E. relapse all glands become swollen, and my throat very sore, which makes swallowing food difficult."
 

Seventh Session

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

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

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

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

Anyway, I approach this section with five sections:

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

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

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

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

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

Eighth Session

We can now return to page 3 and list any help you may need for the assessment. Going through the form will hopefully have triggered all appropriate ideas. Just in case though, here are a few you may require:
  • I will require disabled parking outside the centre.
  • If the assessment centre is not on a ground floor I will need a lift or escalator.
  • I cannot use public transport.
  • I may require somewhere to lie down while I wait for the assessment.
  • I may require a dark quiet room while I wait for my assessment.

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

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

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

 Aaaaaand ... relax!

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



ESA50 Example Answers for M.E. / Fibro

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

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

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

On Page 3, there is a box that says "Tell us about any help you would need if you have to go for a face-to-face assessment."
  • I am unable to use public transport.
  • I would require an assessment on the ground floor, or a building with a lift, because I cannot use stairs.
  • I would require parking at the front of the assessment centre, as I cannot walk further than 50 metres.
  • I would require a ramp at the entrance of the building, as I use a wheelchair.
  • I would require seating at reception, as I cannot remain standing, for the queue to register.
  • Ideally I would wait in a darkened room as I am very sensitive to light, but if this is unavailable I will cover my head / wear sunglasses in the centre.
  • Ideally I wait in a silent room as I am very sensitive to sound, but if this is unavailable I will wear earplugs / ear defenders. Please bring this to the attention of the assessor, as I may not hear him / her when they call me for my assessment.
  • I require seats with no arms as I need to raise my legs from the floor.
  • I require seats with no arms as I need to lie down while I await assessment.





Question 1: Moving Around & Using Steps

  • Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome affects me when I'm walking, so I am unable to walk many steps without needing to sit / lie down. (If OI does not affect your walking, do not use it in this section).
  • Post Exertional Malaise affects me very quickly, so I am unable to walk many steps without needing to pause to rest.
  • It is too painful, due to pain in the muscles of my legs, caused by M.E. / Fibro, for me to walk more than 50 metres.
  • It is too painful, due to pain in the muscles of my legs, caused by M.E. / Fibro, for me to raise my legs to use steps.
  • I cannot walk any distance unaided due to dizziness / vertigo.
  • I cannot mount any steps unaided, due to dizziness / vertigo.
  • My balance is too poor to walk 50 metres unaided.
  • My balance is too poor to walk up any steps unaided.
  • I cannot walk due to weakness in my legs.
  • I cannot use steps due to weakness in my legs.
  • I usually / often / sometimes crawl up the stairs in my house.
  • I use a stick to walk with, because it helps reduce pain.
  • I use a stick to walk with, because it helps with my balance.
  • I use a stick that has a seat on it, so that I can avoid passing out because of Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
Incidentally, many people with M.E. and Fibro do not know that they have Orthostatic Intolerance. Do you find that when you remain in a stationary position (standing, some people suffer it when sitting with feet down, too) that you become light headed, slightly nauseous, kind of sweaty palms, and just generally don't feel right? Is it alleviated by raising your legs? If yes, then you need to be tested for it (most doctor's aren't familiar with it, so it's useful to print out information about it for them). For now though, on your ESA50 refer to it as becoming light headed or feeling like you will pass out. (The reason I keep using three names for it is because different specialists seem to know it by different names. The last one, "Postural Tachycardia Syndrome" isn't the same as the others, but they are part of Postural Tachycardia Syndrome). Complicated, isn't it!

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

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



Question 2: Standing & Sitting
  • I am unable to remain in a stationary standing position for more than ## minutes, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
  • Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome last caused me to pass out from a standing position on ##/##/####.
  • I struggle badly from Post Exertional Malaise. As such I am frequently so exhausted that I cannot sit up at all, let alone move from one seat to another.
  • I am unable to remain in a stationary standing position due to lack of strength in my legs.
  • I am unable to remain in a stationary standing position due to dizziness / vertigo causing me to fall.
  • I am unable to remain in an upright seated position due to weakness.
  • I am unable to move from one seat to another without help, due to weakness in my arms and legs. I cannot lift my own body.
  • I am unable to remain in a seated upright position without my legs raised in front of me, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
  • I am unable to remain in any position, whether seated or standing, for more than ## minutes due to discomfort.
  • I use a stick with attached seat because I am unable to remain in a standing position due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.


Question 3: Reaching
  • I am unable to raise my arms above my head due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
  •  I am unable to raise my arms as if to a upper shirt pocket, due to Orthostatic Intolerance / Orthostatic Hypotension / Postural Hypotension / Postural Tachycardia Syndrome.
  • I am unable to raise my arms above my head due to weakness.
  • I am unable to raise my arms as if to an upper shirt pocket, due to weakness.
  • I am unable to raise my arms above my head due to pain in the muscles.
  • I am unable to raise my arms as if to an upper shirt pocket, due to pain in the muscles.
  • I am unable to raise my arms above my head as it causes / exacerbates my dizziness / vertigo.
  • I suffer badly from Post Exertional Malaise. As such my arms often feel too heavy to lift above my head.
  • I suffer badly from Post Exertional Malaise. As such my arms often feel too heavy to lift them as if to a shift pocket.


Question 4: Picking up & Moving Things
  • I am unable to pick up either a half litre or a litre carton due to extreme pain and / or stiffness in my hands.
  • I am unable to pick up either a half litre or a litre carton due to disorientation caused by extreme fatigue.
  • I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to pain in the muscles.
  • I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to extreme fatigue making them feel very heavy.
  • I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to weakness.
  • I am unable to pick up a large object such as an empty box, because I cannot hold my arms out to the side due to pain in the muscles.
  • I am unable to pick up and move an object from one place to another due to a lack of co-ordination caused by extreme fatigue.
  • I cannot bend to pick up a large object such as a box, from the floor, due to pain in my legs.
  • I cannot bend to pick up a large object such as a box, from the floor, due to vertigo / dizziness.


Question 5:  Manual Dexterity (Using Your Hands)
  • I cannot *pick example from form* due to pain and / or stiffness in the muscles of my hands.
  • The ability to use my hands is severely affected when I am exhausted, because I become very unco-ordinated.


Question 6: Communicating With People
  • I am frequently so exhausted that my speech becomes very slurred, and I cannot formulate a coherent sentence (with written, typed, or spoken) due to struggling to find the required words.
  • When I'm extremely fatigued I am unable communicate sensibly in a verbal manner.
  • When I'm extremely fatigued I am unable to communicate sensibly in writing.
  • When I'm extremely fatigued I am unable to communicate sensibly by typing.
  • I am often / frequently / never able to communicate by typing due to severe pain in my hands.
  • I am often / frequently / never able to write due to severe pain in my hands.
  • I am often / frequently / never able to speak due to severe pain caused by TMJ (Temporomandibular Joint Disorder).


Question 7: Other People Communicating With You
  • I frequently struggle to understand what people are saying to me due because of tinnitus.
  • I frequently become confused when people talk to me, because when I'm extremely confused my audio processing is fairly / moderately / severely affected.
  • When I'm extremely fatigued I struggle to follow words on a screen.
  • When I'm extremely fatigued I struggle to read more than a few sentences / paragraphs / pages.


Question 8: Getting Around Safely
  • Severe fatigue affects my cognitive ability to problem solve. As such I struggle to find my way around somewhere unfamiliar.
  • Severe fatigue affects my cognitive ability to problem solve. As such I struggle to find my way around somewhere unfamiliar without it causing further exhaustion.


Question 9:  Controlling your Bowels & Bladder, and Using a Collecting Device
  • I am often unable to get to the bathroom when I need to, due to extreme weakness. As such I use incontinence pads.
  • I often have urinary incontinence accidents.
  • I often have incontinence accidents from my bowels.
  • The medication I am taking for #### causes unpredictable loose stools, so I often suffer incontinence which may stain my clothing.
  • The medication I am taking for ##### causes urinary urgency, so I often suffer urinary incontinence because I cannot reach a toilet quickly enough.
  • I often suffer incontinence at night / in my sleep.
You can include problems with menstrual cycles that are difficult to control or may stain your clothing, in this section too.



Question 10:  Staying Conscious When Awake
  • CFS affects my sleep pattern and Circadian Rhythm severely. I need to sleep approximately ### in each 24 hour cycle. My personal body's most comfortable rhythm is to wake at ####, sleep at ####, with #### rest / sleep periods in between. 
  • On worst days I will sleep straight through several days at a time.
  • I am constantly at risk of passing out due to Orthostatic Intolerance / Orthostatic Hypertension / Postural Hypotension / Postural Tachycardia Syndrome. The last time I passed out due to this was #####.
  • When I am extremely fatigued my cognitive function is severely affected, to such a degree that I am at risk of having accidents, or performing acts that are dangerous. My ability to process information is reduced by approximately ##%. [This is what we call brainfog; most health professionals are unfamiliar with this colloquial term we sufferers use].


Question 11: Learning how to do Tasks
  • Extreme fatigue affects my cognitive ability. As such I find it difficult to follow the steps taken when learning a new task.


Question 12: Awareness of Hazards & Danger
  • When I am extremely fatigued my cognitive ability to process the information surrounding me is reduced by approximately ##%. As such I am at high risk of not processing a hazard or danger before it happens.


Question 13: Starting & Finishing Tasks
  • Severe exhaustion significantly affects my cognitive ability and memory. As such when I attempt to learn a new task, I am unable to remember the beginning of the process when I'm in the middle, let alone when I've reached the end.  
  • I am unable to perform two sequential personal tasks (ie, brushing my teeth and washing my face), one after the other without taking a rest break in between the two tasks.


Question 14: Coping With Changes
  •  Because any activity causes me severe Post Exertional Malaise I have to prepare myself a lot in advance. I usually have to rest before an activity, and then again after an activity. As such, if an activity is re-scheduled it can be detrimental to my health. If it is brought forward, I will be unprepared for it, and may have to cancel due to not being physically and cognitively ready. If it is moved backwards it can be upsetting, as I will have wasted valuable days resting in preparation for the activity.
  • Small changes, such as a doctor's appointment running late can affect me severely due to the immense amount of stimulation in waiting rooms (a lot of sound, light that I cannot hide from, etc).
  • There is no such thing as a small change to my routine, because every activity I undertake must be prepared for carefully due to needing to pace and use my energy extremely carefully. For example, if I visit my GP for ten minutes in the week, I will need to rest in a darkened silent room, for several days in order to return to what is 'normal' for me.

Question 15: Going Out
  • Severe fatigue affects my cognitive ability, as such planning a journey.
  • Severe fatigue affects my cognitive ability, as such, navigating a new place are too difficult.
  • Severe fatigue affects my cognitive ability, as such planning a journey and navigating a new place are too difficult.
  • I cannot walk to my nearest shops.
  • I cannot drive.
  • I cannot use public transport due to over stimulation.
  • Fatigue affects my ability to drive. As such I cannot reliably and repeatedly drive myself anywhere.
  • I need someone with me when I leave the house, because I become fatigued very quickly, so can place myself in danger.
  • I need someone with me when I leave the house as I need to use a wheelchair, which I cannot self-propel.


Question 16: Coping With Social Situations
  • I become anxious about meeting new people, because most people do not understand that severe fatigue affects my speech and cognitive ability. So people often think that I am drunk or slow.
  • I become anxious about meeting people I do know, because I know that any activity will have a knock on affect which can last for days or even weeks.


Question 17: Behaving Appropriately
  • I often fall asleep in social situations, which some people do not like.
  • When I am fatigued my cognitive ability is severely affected. It takes me a lot longer to process information around me, situational and conversational. It often gives the impression that I am not listening, or not interested in what people are saying or what is happening.
  • When I become fatigued I experience a lot of pain, which causes me to become very grumpy. This always has a negative affect on social situations.


Question 18: Eating & Drinking
  • I need help to eat and drink because my hands are too painful to hold cutlery or a drinking receptacle.
  • I need to be prompted to eat and drink because my memory is so poor that I often forget to eat.
  • My memory is very poor so I need someone to keep track of when I eat and drink.
  • I cannot plan a meal due to my cognitive abilities being affected by severe fatigue.
  • I cannot chew food due to TMJ (Temporomandibular Joint Disorder).
  • I cannot swallow food or drink due to extreme weakness.


Has your GP refused to help provide you with medical evidence?

"As all of you will no doubt be aware, Black Triangle and our sister organisation Disabled People Against Cuts have assembled a first-class legal team to take forward legal action against Local Medical Committees and individual GPs who have launched a disgraceful ‘Just Say No’ to providing Further Medical Evidence Campaign.
This campaign seeks to persuade GPs to deny sick and/or disabled patients the Further Medical Evidence (FME) required to support their ESA applications and achieve justice before First-Tier Social Security Appeals Tribunals.
We have already identified a number of cases with “standing”.
Our law requires that the party, or parties bringing a case before the courts must demonstrate:
“sufficient interest in the matter to which the application relates”
i.e.
“an individual who is directly affected by a decision or other measure” who will on that basis have a “sufficient interest”.
In our case, this means anyone who has requested FME from their GP to support their case with the DWP and has been refused (Their refusal to provide FME is the matter to which our legal action relates).
We now invite as many of you as possible who have been refused FME under this policy to make contact with us immediately so we can progress our case further, in the most legally watertight manner achievable, without further delay.
Sick and/or disabled people deserve and have an absolute right to expect better than this from our medical professionals.
The LMCs ‘Just Say No’ Campaign is a a disgraceful betrayal of patients by LMCs from across Britain.
It is, quite frankly, mercenary behaviour that is both morally repugnant and, as we shall fully demonstrate, unlawful.
We are going to put a stop to it.
In the initial stage, please text John McArdle at 07778316875 with ‘Refused FME by my GP’ in the line. We will then phone you back to discuss your case and take it from there.
Yours in solidarity
John McArdle
Co-Founder
Black Triangle Campaign
Edinburgh, 7th October 2013"

(Copied and pasted from the black triangle website http://blacktrianglecampaign.org/ ) 

Sunday 6 October 2013

ESA - Descriptors

When you apply for Employment & Support Allowance your application is scored using 'descriptors'. The table below shows you these descriptors. You can work out how much you would score yourself using the table. The DWP are very harsh with their scoring though.

How it works:
For an example I will use walking. The first activity in the table below is called 'mobilising', that means walking. The form you filled in evaluates how far and how well you can walk. Using what you have written on the form (and what your supporting evidence says) the Decision Maker will assess whether you fall into 1a, 1b, 1c, 1d, or 1e. So, if for example, you cannot walk at all, you would fall in to 1a. You then use the column marked 'Points' to work out how many points you score for that descriptor. 1a scores 15 points.

You need to score 15 points in total, across the whole form, in order to receive ESA.

If you do not score 15 points you may receive ESA using certain regulations. This will be covered in another post.

You may be placed directly in the Support Group if you score 15 points under one descriptor; it depends which descriptor though. The Support Group also has a separate list of descriptors.


SCHEDULE 2
Regulation 15(2) and (3)
Assessment of Whether a Claimant has Limited Capability for Work
PART 1
Physical Disabilities
(1) Activity (2) Descriptors (3) Points
1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid is normally or could reasonably be worn or used.


1(a) Cannot, unaided by another person, either:
(i) mobilise more than 50 metres on level ground without stopping in order to avoid significant discomfort or exhaustion; or
(ii) repeatedly mobilise 50 metres within a reasonable timescale because of significant discomfort or exhaustion.
15
(b) Cannot, unaided by another person, mount or descend two steps even with the support of a handrail. 9
(c) Cannot, unaided by another person, either:
(i) mobilise more than 100 metres on level ground without stopping in order to avoid significant discomfort or exhaustion; or
(ii) repeatedly mobilise 100 metres within a reasonable timescale because of significant discomfort or exhaustion.
9
(d) Cannot, unaided by another person, either:
(i) mobilise more than 200 metres on level ground without stopping in order to avoid significant discomfort or exhaustion; or
(ii) repeatedly mobilise 200 metres within a reasonable timescale because of significant discomfort or exhaustion.
6
(e) None of the above applies. 0
2. Standing and sitting.





2(a) Cannot move between one seated position and another seated position which are located next to one another without receiving physical assistance from another person. 15
(b) Cannot, for the majority of the time, remain at a work station:
(i) standing unassisted by another person (even if free to move around);
(ii) sitting (even in an adjustable chair); or
(iii) a combination of paragraphs (i) and (ii),
for more than 30 minutes, before needing to move away in order to avoid significant discomfort or exhaustion.
9

(c) Cannot, for the majority of the time, remain at a work station:
(i) standing unassisted by another person (even if free to move around);
(ii) sitting (even in an adjustable chair); or
(iii) a combination of paragraphs (i) and (ii),
for more than an hour before needing to move away in order to avoid significant discomfort or exhaustion.
6

(d) None of the above applies. 0
3. Reaching.

3(a) Cannot raise either arm as if to put something in the top pocket of a coat or jacket. 15
(b) Cannot raise either arm to top of head as if to put on a hat. 9
(c) Cannot raise either arm above head height as if to reach for something. 6
(d) None of the above applies. 0
0
4. Picking up and moving or transferring by the use of the upper body and arms. 4(a) Cannot pick up and move a 0.5 litre carton full of liquid. 15
(b) Cannot pick up and move a one litre carton full of liquid. 9
(c) Cannot transfer a light but bulky object such as an empty cardboard box. 6
(d) None of the above applies. 0
5. Manual dexterity.

5(a) Cannot press a button (such as a telephone keypad) with either hand or cannot turn the pages of a book with either hand. 15
(b) Cannot pick up a £1 coin or equivalent with either hand. 15
(c) Cannot use a pen or pencil to make a meaningful mark with either hand. 9
(d) Cannot single-handedly use a suitable keyboard or mouse. 9
(e) None of the above applies. 0
6. Making self understood through speaking, writing, typing, or other means which are normally or could reasonably be used, unaided by another person. 6(a) Cannot convey a simple message, such as the presence of a hazard. 15
(b) Has significant difficulty conveying a simple message to strangers. 15
(c) Has some difficulty conveying a simple message to strangers. 6
(d) None of the above applies. 0
7. Understanding communication by:
(i) verbal means (such as hearing or lip reading) alone;
(ii) non-verbal means (such as reading 16 point print or Braille) alone; or
(iii) a combination of sub-paragraphs (i) and (ii),
using any aid that is normally or could reasonably be used, unaided by another person.
7(a) Cannot understand a simple message, such as the location of a fire escape, due to sensory impairment. 15
(b) Has significant difficulty understanding a simple message from a stranger due to sensory impairment. 15
(c) Has some difficulty understanding a simple message from a stranger due to sensory impairment. 6
(d) None of the above applies. 0








8. Navigation and maintaining safety using a guide dog or other aid if either or both are normally used or could reasonably be used. 8(a) Unable to navigate around familiar surroundings, without being accompanied by another person, due to sensory impairment. 15
(b) Cannot safely complete a potentially hazardous task such as crossing the road, without being accompanied by another person, due to sensory impairment. 15
(c) Unable to navigate around unfamiliar surroundings, without being accompanied by another person, due to sensory impairment. 9
(d) None of the above applies. 0
9. Absence or loss of control whilst conscious leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting), despite the wearing or use of any aids or adaptations which are normally or could reasonably be worn or used. 9(a) At least once a month experiences:
(i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or
(ii) substantial leakage of the contents of a collecting device, sufficient to require cleaning and a change in clothing.
15
(b) The majority of the time is at risk of loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder, sufficient to require cleaning and a change in clothing, if not able to reach a toilet quickly. 6
(c) Neither of the above applies. 0






10. Consciousness during waking moments. 10(a) At least once a week, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration. 15
(b) At least once a month, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration. 6
(c) Neither of the above applies. 0
PART 2
Mental, cognitive and intellectual function assessment
(1) Activity (2) Descriptors (3) Points
11. Learning tasks.

11(a) Cannot learn how to complete a simple task, such as setting an alarm clock. 15
(b) Cannot learn anything beyond a simple task, such as setting an alarm clock. 9
(c) Cannot learn anything beyond a moderately complex task, such as the steps involved in operating a washing machine to clean clothes. 6
(d) None of the above applies. 0
12. Awareness of everyday hazards (such as boiling water or sharp objects).



12(a) Reduced awareness of everyday hazards leads to a significant risk of:
(i) injury to self or others; or
(ii) damage to property or possessions, such that the claimant requires supervision for the majority of the time to maintain safety.
15
(b) Reduced awareness of everyday hazards leads to a significant risk of:
(i) injury to self or others; or
(ii) damage to property or possessions, such that the claimant frequently requires supervision to maintain safety.
9
(c) Reduced awareness of everyday hazards leads to a significant risk of:
(i) injury to self or others; or
(ii) damage to property or possessions, such that the claimant occasionally requires supervision to maintain safety.
6
(d) None of the above applies. 0
13. Initiating and completing personal action (which means planning, organisation, problem solving, prioritising or switching tasks). 13(a) Cannot, due to impaired mental function, reliably initiate or complete at least two sequential personal actions. 15
(b) Cannot, due to impaired mental function, reliably initiate or complete at least two sequential personal actions for the majority of the time. 9
(c) Frequently cannot, due to impaired mental function, reliably initiate or complete at least two sequential personal actions. 6
(d) None of the above applies. 0
14. Coping with change.

14(a) Cannot cope with any change to the extent that day to day life cannot be managed. 15
(b) Cannot cope with minor planned change (such as a pre-arranged change to the routine time scheduled for a lunch break), to the extent that, overall, day to day life is made significantly more difficult. 9
(c) Cannot cope with minor unplanned change (such as the timing of an appointment on the day it is due to occur), to the extent that, overall, day to day life is made significantly more difficult. 6
(d) None of the above applies. 0
15. Getting about.

15(a) Cannot get to any place outside the claimant’s home with which the claimant is familiar. 15
(b) Is unable to get to a specified place with which the claimant is familiar, without being accompanied by another person. 9
(c) Is unable to get to a specified place with which the claimant is unfamiliar without being accompanied by another person. 6
(d) None of the above applies. 0
16. Coping with social engagement due to cognitive impairment or mental disorder. 16(a) Engagement in social contact is always precluded due to difficulty relating to others or significant distress experienced by the claimant. 15
(b) Engagement in social contact with someone unfamiliar to the claimant is always precluded due to difficulty relating to others or significant distress experienced by the claimant. 9
(c) Engagement in social contact with someone unfamiliar to the claimant is not possible for the majority of the time due to difficulty relating to others or significant distress experienced by the claimant. 6
(d) None of the above applies. 0
17. Appropriateness of behaviour with other people, due to cognitive impairment or mental disorder. 17(a) Has, on a daily basis, uncontrollable episodes of aggressive or disinhibited behaviour that would be unreasonable in any workplace. 15
(b) Frequently has uncontrollable episodes of aggressive or disinhibited behaviour that would be unreasonable in any workplace. 15
(c) Occasionally has uncontrollable episodes of aggressive or disinhibited behaviour that would be unreasonable in any workplace. 9
(d) None of the above applies. 0