A beginners Guide To Claiming Disability Living Allowance or Attendance Allowance For People With ME/CFS

Before you actually start your claim for the benefit you need to make certain preparation to improve your chances.

If possible obtain a copy of the Disability Rights Handbook, from Disability Alliance their phone number is 020 7247 8776, the book costs £20 but is reduced for people on benefits. I believe there is a copy kept in the ME group library, then read the section regarding claiming disability living allowance or attendance allowance.

Speak to your GP and see if they will support your application, remind them of the symptoms you have and the effect they have on your life.

Have a think about what is actually wrong with you, yes we all know you have ME, but do you have other underlying physical problems, because it seems that lots of us, have spinal problems, arthritis, repetitive strain injury as well as other illnesses diagnosed or not.

The reasons for this is that the other conditions may actually improve your chances of getting benefit, although this may not seem fair, if it improves your chances of a successful claim why not go along this route also this is because the adjudication officer's are more likely to accept a diagnosis of arthritis as a reason sadly than they are for ME, this is despite the recent guidance in their own handbook http://www.dwp.gov.uk/medical/med_conditions/major/cfs/

The next thing you need to do, is to keep a diary for a least a week, stating all the problems you have had in the course of daily living whether it be for attention or supervision, also all the symptoms and the severity of them, this is for you to submit with your application when you make it, if you are unable to do this yourself, then ask your carer to do this for you.

If you have seen any consultant, physiotherapist or any other health professional request a report from them explaining what it is going to be used for, if you have not already been seen by anybody, this could be a good time to visit people such as Dr Wright, Dr Perrin, Gail Sumner, or see if you can be referred for assessment by a health professional, at which point again, you need to ask for report about your diagnosis and how it affects your life.

The other important thing that you need to do, is to contact social services and request a multidisciplinary community care assessment, when you contact them, do not explain why you want them to carry this out, just state that you are disabled, and your understanding is that it is illegal for them not to carry this out. When they have completed the assessment they should supply you with a care plan which explains what your needs, you can submit this as evidence with your form.

Your carer is entitled to a carers assessment as well, and again it is illegal for social services to refuse this, so in the same way, if appropriate you can submit this to reinforce the help that you require.


It may or may not be appropriate to submit evidence from your employer to support your claim, the dilemma may be that the benefits agency, considers because you are fit for work, you do not meet the criteria for the care component, so seek expert advice before going down this path.


Now you need to ring up and request an application form, the best number to ring is 0800 88 22 00 this is because, as soon as you ring up a form will be stamped and this will be the start of your claim, however long it then takes.

Now comes the hard bit, the questions on the form, ask about all the negative needs you have in daily living and the only way to obtain benefit is to answer honestly, explaining just how bad it is in coping with your illness and what your needs in relation to attention and supervision.



When I was filling my form in, I found talking about my bodily functions and the help that I needed from my carer really demoralising and a reminder of how difficult I was finding it to cope with life, in particular because I was trying to retain my independence.

For this reason it is well worth while getting somebody independent who is competent in filling in forms for people with ME to assist, ideally the carer should also be there, because often we are unrealistic about our abilities, whereas the carer sees as when we are at our worst and can therefore provide a more realistic view of what our needs for carer and supervision are.

Please remember that this form can take between two and three hours to complete which can be quite tiring if it takes less than two hours then something has been missed out so check the form again to make sure everything is being covered. If need be do it in more than one session

Now to the actual form, at present there are two versions of the form, so it is a little bit hard to give other than general advice about the actual layout of the form, when you look at the form it will have tick boxes, and small boxes in which to give your answers, in the little boxes put “see attached notes” and rather than try to squeeze everything in the boxes, either write or type it up in detail explaining how difficult and complicated it is to carry out the tasks that they are questioning you about.

You need to start off explaining how difficult it is from first waking up, getting out of bed, getting washed, fed and then the various difficulties you have throughout the day.

The first part of the form, looks at your mobility problems, do not take for granted, that people will understand the difficulties that you have because of the fatigue, poor coordination and any other reasons that stop you from walking or restrict your ability to walk, also it is important to mention about how much pain you are in and where the pain is.

One of the things to consider is that often we are unrealistic about our ability to walk and try to do too much, which often leads to a deterioration in our health, prevents us from making further progress, all we have other difficulties such as going light headed, stumbles and falls.

Therefore it is important to accept, and state in the form that because we are unrealistic in our expectations when walking that we have a need for supervision and attention, which can lead to a significant deterioration in our health, whether we need any walking aids to assist us.

Now onto the care component, it is important not to take anything for granted about others understanding what your problems are, nor should embarrassment stop you from recording the care & attention that you need.

As I said earlier, you need to start from first waking up and getting up out of bed, that's making the presumption that you are able to get up out of bed, if not you need to explain what the difficulties are, whether it is fatigue pain or other reasons, if you have problems getting out of bed then describe what these are what assistance you require.

Next you need to explain about the difficulties you have in the bathroom, whether you need to sit down to wash, can you hold the soap or flannel do you get breathless with the exertion of washing yourself, can you try yourself partially or over, if you have a bath can you get in and out easily, do you have handrails to make it easier, do you get breathless because of the steam, can you wash your hair is it painful to do this or to bend down to do the lower part of your body.

And the days that you physically do not feel able to get up and have a wash or a bath, explain what happens on those days and why, do you put yourself at risk in the bathroom trying to be independent if so state this.

Now for one of the most difficult parts in completing the form, toileting, can you reach the toilet when you need it, if you can sit down, can you then get up without assistance, do you have aids to assist you with this, can you clean yourself after using the toilet, can you were just your clothing before and after you have used the toilet, is it painful for you to use the toilet, can you use commode or urine bottle, if so are you able to empty it, if not what happens.

Do you have accidents, are there times when you are not able to get to the toilet & soil yourself, if so can you clean yourself afterwards or do you need help from others, for all of us these sort of questions are difficult, but actually give an indication of how difficult daily living is.

What about getting dressed, are the days you are too tired to get dressed, how often does this occur, do you find it difficult or painful to dress, it is to do with your top half, bottom or all, why is this, explain in detail, can you cope with buttons, bra straps, shoelaces and zips, are there times that you need reminding to dress appropriately.



How about getting in and out of your chair, is it painful to sit down or get up from your chair, is it painful when you are sat in the chair, do you have a special chair to help you cope, do you need assistance to get up out of the chair from others, are you unsteady when you try to stand up, do you stumble as you tried to move away from the chair, do you hang on to the furniture to keep you steady.

What about the stairs can you cope with them, do you hang on to the banisters when going up or down, explain why, do you have to stop for a rest, is it painful or do you get breathless, you need to explain all this on the form.

Can you make yourself a meal, this means every day, proper 2 meat & vegetable meal, using get a proper cooker with an oven, I do able to think clearly enough to plan the meal, I you physically able to prepare the vegetables and meat, is it painful to chop or peel the vegetables, can you safely reached down to use the oven, can you safely lift hot heavy pans, what happens if you spill something on the floor, can you pick it up, in the past have you had any accidents in the kitchen, what was the outcome, can you open tin cans and bottle caps, all of this is important, because if you fail the cooking test, you will get the lower rate care of DLA even if not granted the full benefit so please explain in detail.

Because we people with ME are unrealistic about our ability to carry out normal daily living tasks, we tend to put ourselves at risk so therefore need supervision from others to make sure we are safe, it is worth time discussing that with carer or others and documenting in what shape and form this occurs to show the adjudication officer the complexity of our needs.

It is very important to document on the form any type of treatment that we are receiving, since when and how often, also what medication we are on, but do not forget to mention, if there are problems, opening bottles, foil containers, remembering when or what dosage to take, and what has happened where mistakes had been made.

You should also explain about the problems at night-time, getting in and out of bed, finding a comfortable position, what happens if you need to go to the toilet, or take medication, because we have night sweats, nightmares, as well as other problems in bed, you need to explain these and the effect they have, and why you need attention and supervision at night.

I may have missed certain issues out, but I feel there is more than enough to be going on with, PLEASE DO NOT UNDERSTATE the level of help you require, even if you live alone or spend much of your time on your own because your partner goes out to work, it does not mean you do not require attention or supervision, these are the most im[portent words you can use & are what the adjudication officer needs to see spelled out.

I cannot guarantee if you do the form & include all of this information etc, that it will be successful, because unfortunately there does appear to be an element of lottery about any claim for DLA, but it will improve your chances & will stand you in good stead if you appeal or go to tribunal.

I forgot to say it is very important to keep a copy of the form & any extra paperwork you submit, and if they send a doctor out to see you make sure you have someone who understands your needs with you & do not try to say you can achieve things that you cannot, plus there is no harm in refreshing your memory by consulting your form before the visit.

If the doctor behaves unethically when they visit or put you under pressure, refuse to continue & straight away make a complaint to DLA about their behaviour.

If sadly you are turned down the first thing to do is ask for copies of the paperwork they used when deciding your claim & if there are errors report them immediately, if they have told lies again make a formal complaint because if you do not take action immediately it is much harder to fight your case at a later date.

All the best in your claim sorry this has been so long, if anybody has other comments or suggestions please let me know, I would welcome constructive critism