Dreaded ESA….

Hi Tori

I went through ‘the change’ last year from Incap to ESA, I will not lie it was nerve wracking, I was worried that my words would not be interpreted correctly and I’d be thrown back onto the ‘find a job’ category crapping myself that if I found a job I’d literally be crapping myself because I need toilet assistance. However the system has improved since all the contravercial media reports when this transition first began.

As Sara suggested CAB are excellent at helping with form filling. Are you in touch with your MD Regional Care Advisor? They too will know how to complete the forms making sure the key relevant points are made. You can find the contact details for the one nearest you on the main site page Regional Care Advisors – contact

When they first telephoned me, they asked about what I would need in place to attend an interview. I was already aware of this question so had notes ready. Car parking with wide bays for wheelchair to get to side of car, suffcient notice to arrange for carer to be available to lift and shift me, push the chair and drive her car. The building must have disabled level access, no steps, lifts to the relevant floors and quite possibly someone to hold all the doors open, so we can wheel through. Depending where the interview would be in relation to where i live, proper disabled toilet facilities. Depending were the interview would take place, depending on travel distance and duration, the time of day the interview could take place [might have to organise lunch I can eat and drinking vessels i can use]. The devil is in the details ‘they’ have not considered about disabled people.

I completed my form myself, but I worked hard at it. I made sure I repeated myself, I made sure I was concise, just because on a good day I could just about struggle through to barely manage something did not mean I can do – I wrote my answers on a note and sort better words and left it a day or three and read them again. Did it say all it needed, was it clear what I meant.

Remember the person reading this [a hastily trained Atos no-medical youngster] knows nothing about you, knows nothing about muscular dystrophy and knows nothing about how your condition relates to you. So if you canot put a sock on, you say just that “I cannot put on shoes or socks”, if you cannot hold a straight glass say just that “I cannot hold a glass it will slip, I cannot use paper cups, they slip, I cannot use ….” you get my drift.

It can feel demoralizing because we all spend our days battling to achieve little wins, to find a way to manage as best we can but on this form you have to list all the negatives and all the difficulties and all the impossibles. But don’t be stoic or forgiving, be blatently honest.

Also before you return the form, keep a copy, scan it into your computer or scan a copy of it. Keep your own records. If youget a decision you disagree with then, get straight in touch with CAB or even MD’s Advocacy Service.

You are not on your own in this battle.

@tori212 wrote:

To be honest i really would like to write out the form myself as obviously i know what i can & can’t do best, i just hope that i can get across what i want to say..

I think you could do that, then run it by someone in CAB in case they suggest certain phrasing etc.

hi torri. i did the form last year. the only real advice i can give you is. when filling out the form always keep in mind how you are on your worst day. also mention environmental factors such as how the weather affects you e.g cold weather stiff muscles. you must put down on the travelling part about how you cant use public transport and if they are to call you in for assessment, everything thing needs to be on one level as you can not use steps unaided.
have you looked at the atos healthcare experiences facebook page. there are lots of people on there that can help you if you get stuck.
p.s dont forget to write your condition down, that its degenerative and progressive. dont forget these people looking at your form are idiots that tick boxes.

dont forget to mention things such as, struggle to wash your hair and DO need help. also the lifting things question. i think its either a box or 2 pinter of milk. remember that you cant lift it off the floor to a work top because of your balance but you can slide it.
the food prep question is basicly, you use a microwave and eat more or less only microwave meals.

Happy to help

ok. brain fog kicked in. were do i look online for the breakdown on pip payments. you know the “you get this much for standard mobility and that much for full mobility”.

@littlestef wrote:

ok. brain fog kicked in. were do i look online for the breakdown on pip payments. you know the “you get this much for standard mobility and that much for full mobility”.

I took a quick scroll down the publshed ‘Benefit Rates for 2013’ and it does not list there what the ££ amounts for PIP’s are, just the DLA rates.

Managed to find something hidden in the FAQ’s thing PIP FAQ’s pdf

Personal Independence Payment will have a Daily Living component and a Mobility component.
Awards will be made up of one or both of these components. Each component will have two rates – standard and enhanced.
Proposed benefits rates for 2013/14:

Daily Living
• Enhanced Rate £79.15
• Standard Rate £53.00

Mobility
• Enhanced Rate £55.25
• Standard Rate £21.00

The daily living enhanced rate of Personal Independence Payment will be the same as the higher rate care component of DLA and the standard rate of the daily living component will be set at middle rate DLA care component The mobility rates of Personal Independence Payment will be the same as the DLA rates.

Awards of Personal Independence Payment will be based upon the circumstances of the individual and will look at the impact of the disability or health condition and the extent to which they are able to live independently and participate in society.

So clear as mud!

Baroness Thomson an MDC Trutee secured a major victory in the wording and making it law regarding the activities tests for PIP – These changes now mean that legally individuals will be assessed on what they can do safely, reliably, repeatedly and in a reasonable time period.

That sentence must be a key consideration when answering any question on any form that asks what can you do.

Very interestng Stef – thanks for that.

I am still going to consider prepared food stuffs, like packs of prepared veg and ready diced meat as an ‘aid’, to most people they might be convenience but for me it is the difference between having them and not.

The PIP/DLA is always the most awkward of forms, because how things can be managed in the home are nowhere near as clear cut and manageable as they are out of the home. For example, I have my ways when it comes to using the bathroom and dressing in my own home, but out of it, whether it be staying th family or a hotel or even trying something on in a dreaded changing room or managing out and about I need a person. At home I have a specific mug and glass, out and about it is pot luck whether they have vessels I can use.

@littlestef wrote:

is it me or are a lot of the questions, the same on the pip form as the esa form?
im doing the same as you. im going to put all meals are microwave meals and that i have to first sit on the bed to get dressed and then lay back so i can fasten my top buttons on my shirt.
however, i reckon im going to get hammered on the mobility as im not a wheelchair user. i can also see the planning a journey questions difficult to get around. :(.
maybe im being paranoid but ive got a feeling that although im disabled enough for the esa support group, im not going to be disabled enough for pip mobility.

Remember the “safely, reliably, repeatedly and in a reasonable time period.” aspect.