N.B.

If possible, please obtain professional help when completing the form. It may help you to be awarded DLA without having to appeal.

Help is available from Shropshire Citizens Advice Bureau Tel: 0845 99 11 00 or

A4U Tel: 01743 251520

Printed DLA guide from the Association of Young People with ME (AYME) to filling in the DLA form for those who have severe ME. This also gives lots of good hints for all people with ME. (Printed material costing just £2 to cover AYME's photocopying costs)

Getting a claim pack and meeting deadlines

The best way to get a claim pack is to make a free phone call to the Benefits Enquiry Line on 0800 882 200 (8.30 am to 6.30 pm Monday to Friday and 9.00 am to 1.00 pm on a Saturday) and ask them to send you a DLA claim pack.

You should then be sent a DLA claim pack with two dates stamped on it. The first is the date you asked for the form and the second is the date, six weeks later, by which you should return it. If you write to ask for a form it will have the (later) date when they received the letter. If you get one from the Jobcentre, check that it has the date on it. As soon as you receive the form, phone your chosen professional and ask for an appointment to fill the forms in. If you are eligible for legal aid because of your low income, you will be aided by legal aid professionals. If not, you will be aided by other trained professionals.

While you’re waiting for the claim pack

Consider:

  • keeping a diary ;
  • making a list of who might provide supporting evidence );
  • sending for a copy of your Personal Capability Assessment medical report if you’ve had your capacity for work assessed recently ;
  • making appointments to see your health professionals to update them on your condition (work out when you are likely to have completed the form, and ask for an appointment to take place soon afterwards);
  • downloading a copy of the claim pack from the DWP website and drafting rough answers to the questions about the problems you have with everyday activities;
  • timing the activities that you have problems with. It is very hard to estimate how long activities take;
  • measuring how far you can walk

Components and levels of DLA

Higher rate mobility: for people who are unable or virtually unable to walk because of a physical health condition. Often taken to mean people who cannot walk more than 50 yards at a reasonable pace without pain, fatigue or breathlessness– although people who can walk further may be eligible.

Lower rate mobility: for people who need someone with them when walking outdoors in unfamiliar places. For example, because they are partially sighted, experience sudden attacks of acute fatigue or have panic attacks.

Higher rate care: for people who reasonably require help (even if they don’t get it) frequently throughout the day and at least twice or for at least twenty minutes at night or who need someone to keep an eye on them throughout the day and for at least twenty minutes or at least twice at night.

Middle rate care: for people who reasonably require help (even if they don’t get it) frequently throughout the day or help at night at least twice or for at least twenty minutes. Alternatively for people who need someone to keep an eye on them throughout the day or for at least twenty minutes or at least twice at night.

Lower rate care: for people who reasonably require help (even if they don’t get it) for at least an hour a day or who are unable to prepare a cooked main meal for themselves.


Things to remember before going for professional help to fill in the form.

•Fill in the pages asking for basic information and your medication.You can use your prescription to get the dosage etc right.

Always keep in mind why you are filling in the form, i.e. to give a picture of your care and mobility needs.

Ask for the help of someone who knows you well. Remember, you may take for granted all the help that is needed or that you require.

Always use your own words and those experiences which you can personally relate to your own situation.

You don't have to have a report from  your GP – you can ask that they do not see the form or be contacted for further information. You may prefer to ask for a report from another health worker who knows you well.

If you want your doctor to write a report, go to see him and talk to him about the problems you are having so that he has up to date information about you.

Keeping a diary: A diary kept for at least five days detailing all the things you have problems with, cannot do unless you have help or cannot do at all is very useful. If you keep a diary before you fill in your claim pack it can make the job a lot easier. In addition, you can send it in with your claim form as additional evidence.

But beware: as ME is a fluctuating condition then don’t keep a diary when you’re having a better spell, it’ll give a very misleading impression.

A diary may also prove invaluable if you need to attend a tribunal as it will be evidence of what problems you had at the time you made your claim. Also, tribunals are very keen on hearing a daily account of the sort of tasks you have trouble with.

Sample Diary

Saturday Morning

Bad day today. Woke up feeling totally exhausted - had a bad night, woke up lots, needed to go down to toilet, couldn't get back to sleep for a long time each time.

My neck is stiff and painful and my hands and shoulders hurt. My hands are not very flexible. I feel extremely depressed. I can't think straight, I can't find the strength to communicate with my partner except 'Yes', 'No' and 'Please don't talk to me now'.

Get out of bed to go to the loo. My body is very stiff and tired. My feet hurt. Get down to the loo slowly. Sit for ages but just wind and pain in stomach. Go back upstairs, getting pains in my thighs by the time I get to the top of the stairs. I need to lie down. Go back to bed. Partner brings me cup of tea. Drink it, doze off for a while.  00.30, get up again. Partner reminds me to take medication - hadn't remembered.

Have a bath. Takes a long time as I feel very sluggish and slow. Try to get out, feel faint and light-headed. Pull plug out immediately, call to partner to come and help me. Dry myself, feel totally exhausted, need to lie down for 15 minutes. Get dressed. Hands are still stiff, need some help with buttons and laces. Partner helps to dry my hair as my arms become tired and painful holding hairdryer and trying to brush.

Have breakfast, feel very bloated and uncomfortable, have to change clothes to something looser.

Partner takes me shopping in car. By the time we get to town I need to get to the loo fast - explosive diarrhoea. No disabled loo with sink inside in the covered market so I can't clean myself up properly. Need to change underwear. No soap in loos, I'm feeling very dirty and not able to get clean. Ask partner to take me home, am very depressed. Partner is very reassuring, calms me down. Need to lie down, am upset and very tired.

Afternoon Partner makes lunch, but I can't eat much. Back in the toilet soon after. Have to clean the toilet and myself. This leaves me feeling very tired and more depressed.

Watch TV in the afternoon till 5.30 on couch with feet up. Take dogs for walk up lane. Come back too tired to cook dinner. Sit in kitchen and tell partner how to do it. Too tired to sit up to table so meal brought to me lying on couch.

Evening Watch TV till 10ish, get up to go to bed very tired and stiff, partner helps me upstairs, helps me undress and into bed. Checks I've remembered my medication. Helps me put on skin treatment to upper arms neck and shoulders as my arms hurt too much to stretch to these places.

During the night Stomach is feeling bloated, uncomfortable and painful. My neck is also very stiff and painful. Can’t get to sleep. Partner has to get up for medication for my tummy pain. Also makes me a hot water bottle and rubs some Ralgex into my neck for me.


Filling in the claim form

It’s not just the tick boxes.

The DLA form has tick boxes and small boxes for numbers and leaves very little space for you to explain how your condition affects you. You can add extra pages if you can’t fit everything in the boxes provided. Put your name and National Insurance number on every additional sheet and on your diary entries.

Give additional information other than just the tick and number boxes.

The care section of the form asks about your various everyday activities. On most pages there is a series of tick boxes followed by an ‘Is there anything else you want to tell us about’ box. Even if it seems that you are repeating information, give as much information as you can.

Say what causes the problems with the activity

Make it clear, in your own words, that the reason you have problems is not about personal choice, but because of your health condition or because you are disabled. For example:

I have problems with this activity because I have ME.

If there is more than one reason why you have problems then say so:

I have problems with this activity because of my inflammatory bowel disease and the medication that I have to take.

You really have to repeat the same thing on every page you complete. It shows how much your ME affects you.

Say what the problems are – in detail

Give as much information as you can about the problems you have. For example:

I have problems with washing and bathing because of my ME. I can’t stand for long in the shower because of pain in my legs, feet and back. I have tried putting a stool in the shower to sit on but it was too cramped and I almost fell trying to stand up again. I need help getting in and out of the bath because it is painful stepping over the edge of the bath and I am very unsteady on my feet. Washing my hair causes a great deal of pain in my arms and shoulders and there are many days when I cannot do it at all. Washing my feet causes pain in my lower back and I cannot reach behind me to do my back, even with a long brush, because of the pain in my arms shoulders and neck. Drying myself is extremely painful; I cannot bend enough to do my calves and feet. I use a towelling bath robe as I can’t bear the towel rubbing against my skin. Some days I am not able to wash, shower or bathe myself.

Give an example

This could be:

When you tried to carry out the activity and it went badly wrong:

About three months ago I tried to have a bath when there was no-one else at home. I managed to get in the bath but I slipped and fell while trying to get out. I was not badly hurt, but it left me feeling terribly shaken thinking how much worse it could easily have been.

A recent attempt to carry out the activity which was not successful:

Last week I tried to wash my hair by myself because I didn’t want to disturb my partner. I was in so much pain that I had to shout for help and had to take extra pain killers. I was unable to do anything for the rest of the day.

If you never attempt the activity alone anymore, say how long it has been since you did so:

I have not a bath or shower without someone to help me since I fell in the bath about three months ago.

Say how someone could help

To get DLA you need to show that you ‘reasonably require’ help or someone to watch over you. You don’t have to show that you actually get, or want, help – just that it would be reasonable for you to have it.

If someone is with me they can help me get in and out of the bath and wash my hair and back and feet for me.

General tips

When you’re filling out the DLA form do whatever works best for you, including the following:

  • write in note form;
  • write in bullet points;
  •  write outside the boxes and all over the page if you can’t fit everything inside the

boxes;

  •  write on additional sheets of your own paper and attach them to the form.

The important thing is to make the form fit your condition, rather than trying to make your condition fit the form.

Repeat yourself as many times as the form requires. It’s very boring, but it is necessary.

How to fill in the number boxes

Many of them ask you to say how often and how long you need help for with each activity. You are also asked how many days or nights you need help. Your answers will affect what rate of the care component you may be eligible for. The important thing to remember is just to fill in the form in as much detail as possible and without underestimating the problems you face. If the amount of help you need varies, see ‘Fluctuating conditions’ below.

How long do you have difficulty or need help for during the day

You don’t actually have to be getting help – or even want to get help - what is important is whether it would be reasonable in view of your health condition, for you to receive this help.

If you need help for at least an hour a day in total you may qualify for the lower rate. It doesn’t matter if this help is needed all in one go or partly in the morning and partly in the evening. So if you need help for 40 minutes in the morning with getting up, washing and dressing and 20 minutes in the evening to get you to bed, this may be enough for you to get lower rate care.  If you don’t know how long things take you, time it.

To get the middle rate you have to show that you need help ‘frequently throughout the day’, even if this amounts to less than an hour a day in total.

How long do you have difficulty or need help for at night

You have to need help for at least 20 minutes a night or at least twice a night, for it to count. If you only need help at night you may get the middle rate care component. If you need help during the day and at night you may get the higher rate care component.

How many days / nights a week

Remember this is about difficulties you ‘usually’ have – not your best or worst days. If you always have these difficulties then the answer is 7 days. If there are days when you wouldn’t have difficulties then give an average. In order to count, the difficulties you have need to be for the majority of the time. If you need help less often than four or five days a week you will be less likely to qualify for DLA.

Fluctuating conditions

ME is a condition that varies from day to day, week to week or month to month. This a real problem when filling in a DLA form. Explain how you are on your bad days and then how you are on your ‘better days’. (Please note that if you use expressions like ‘good days’ or ‘normal days’ it may be assumed that these are days on which you have no problems whatsoever). So, for example you might say:

On bad days I cannot get out of bed at all because of my ME. On better days I can only get out of bed with help from someone else.

If you have very few (or no) days when you can get out of bed easily, then you can reasonably say that you need help seven days a week.

Be careful not to underestimate your condition. Are your ‘better days’ actually free of problems, or just relatively so by your standards? It may be that, for the purposes of claiming DLA, you have to accept that you don’t really have any ‘good days’ at all – you’ve just learnt to deal positively with your condition. Having to think about this may be very distressing for you, so please make sure there is someone available to offer you support if you need it.

If you do have periods when you do not have problems then average them out as follows:

If your condition varies from day to day

Decide on average how many difficulty free days a week you have. If it’s only 1 or 2 then you need help 5 or 6 days a week.

If your condition varies from week to week

Again average it out. If you have about one good week a month that’s a bit less than a quarter of the time, so you still need help on an average of 5 to 6 days a week.

If your condition varies from month to month

If you have long periods of remission then you should decide whether you have no problems at all during the periods of remission or whether you still suffer from some problems. If you do have periods of months when you have no problems, you are less likely to be eligible for DLA during those periods.

About you

Most of Part 1 is straightforward factual questions about your name, address, contact details, etc.

Daytime phone number

The form asks for a daytime contact number. You may, however, prefer not to be contacted by phone for any one of a number of reasons:

  • If your ME makes it difficult for you to concentrate and answer questions accurately on the phone, you may prefer to have questions in writing so that you can deal with them when you are well enough and at your own pace.
  • You may be too slow answering the phone as you can’t move quickly enough.
  • You may feel that it is best for both parties if everything is in writing so that there can be no dispute about what questions were asked and what answers were given.
  • Bear in mind that the DWP may well already have a telephone number for you however and also that if they have to write to you rather than phoning it may take longer to deal with your claim.

10 What type of accommodation?

The type of accommodation you live in, for example a care home or a nursing home, can make a difference to whether you are eligible for DLA. It may also be taken into account by the decision maker when deciding how severe they consider your condition to be.

11 Where is there a toilet?

If there are toilets upstairs and downstairs you will need to tick both boxes.

Where do you sleep?

If you sometimes sleep downstairs and sometimes upstairs you will need to tick both boxes then write ‘See additional sheet’. On the additional sheet explain how often you sleep in each place and why.

About your illnesses or disabilities and the treatment or help you receive

13 Please list separately details of your illnesses, disabilities or diagnosis

Column 1 Name of illness or disability or diagnosis

List all your health conditions. As well as physical conditions, include any emotional or mental health problems such as depression or anxiety. Your entitlement to DLA is based on the combined effects of ALL your health problems, so make sure you put them all down.

If you don’t yet have a diagnosis, explain roughly what the problem is. For example: severe fatigue, not yet diagnosed. If necessary give further details about what investigations have been, or are going to be, carried out on page 37 or an additional sheet.

Column 2 How long have you had this illness or disability?

Think carefully about how long you have had the condition: many people go for years with symptoms before they seek help or get a proper diagnosis. The length of time you have had the condition may affect the length of any award of DLA .

Column 3 What medicines or treatments (or both) have you been prescribed?

The medication you take, and how long you’ve been taking it, will be used as an indicator of whether your condition is mild, moderate or severe. The same is true of any treatment you receive.

You need to list all the medication you are taking in relation to each condition in this column.

(You may want to put down medication you no longer receive) and you will need to put down any treatment you have had.

Have you been prescribed medication in the past which you are no longer taking but which demonstrates the seriousness of your ME.

In the same way, if you have had treatment in the past which shows the seriousness of your condition then list it here, even if it was years ago. For example, you may have attended a  Shropshire Enablement Team course, a pain clinic or had a course of physiotherapy or CBT.

What is the dosage?

In this column you need to list the dosage and how often you take each of your medications.

If you are submitting a prescription list you don’t need to complete this column.

14 Apart from your GP, in the last 12 months, have you seen anyone in connection with your illnesses or disabilities?

There is a list of health professionals on this page of the form, plus a social worker is also mentioned. If you see anyone else who could be regarded as a ‘professional’ give their details here.

This is another of the ways in which the DWP may decide whether your condition is mild, moderate or severe. So if, for example, you have only seen your GP in the last twelve months then this will be used as evidence that your condition is likely to be only mild, otherwise you would have been seeing a specialist nurse or consultant.

If there is a reason why you don’t see a specialist, for example because you’ve seen one in the past but there was nothing more they could do for you, then write ‘See attached sheet’ and give more details there.

15 Does anyone else help you?

If your friend or relative is happy to be included on the form then there’s no problem.

16 About your GP

The frequency with which you see your GP may also be taken into account as an indicator of how serious your condition is. However, you may not see your GP about your condition either because you have a specialist who you see or because there is nothing anyone can do about your condition other than, perhaps, give you repeat prescriptions for your medication. Make sure you make an appointment to give your GP an up-to date picture of your problems as soon as you’ve completed this form and BEFORE they are contacted by the DWP. You should also advise your GP that the DWP may contact them.

19 Do you have any reports about your illness or disabilities?

If you have a copy of any reports or a care plan which you consider to be accurate and up-to date and you think it would help the decision maker come to an accurate decision, then include it with your claim pack.

20 Are you on a waiting list for surgery?

Being on a waiting list for surgery may be strong evidence of the seriousness of your condition. It might, however, also be evidence that your care needs may reduce in the future, after surgery and any necessary period of convalescence.

21 Have you had any tests?

Even if the results are some years ago, if they support your claim and demonstrate how serious your condition is – particularly if it is one that is known to deteriorate over time – then include details here.

22 Aids and adaptations

Column 1 Aids and adaptations

Aids and adaptations may include things such as:

a hoist, monkey pole or bed-raiser may help you get out of bed

a commode, raised toilet seat or rails may help you with your toilet needs

bath rails, a shower seat or a hoist may help you bath or shower

a long-handled shoehorn, button hook, zip pull or sock aid may help you dress

a stairlift, raised chair, wheelchair or rails may help you move about indoors

a walking stick, walking frame, crutches or artificial limbs may help you get around outdoors

special cutlery or a feeding cup may help you eat and drink, or

a hearing aid, or Braille terminal may help you communicate.

Column 3 How does this help you?

Explain what you use the aid or adaptation for – even if it should be obvious.

Column 4 What difficulty do you have using this aid or adaptation?

Aids and adaptations can work both ways – they may support your claim by showing how severe your condition is, but they may undermine it by suggesting that help from the aid or adaptation means that you don’t need help from another person. So, if you have an aid or adaptation, but still have difficulties with the activity then it’s vitally important that you say so. For example, you may have a stair lift which means that you no longer need help with getting up and down the stairs. But you may need someone to help you get onto the stair lift and get off it again and to make sure that you are safe while going up or down in the stair lift. So, although you have a stair lift, you still need attention from another person when going up or down stairs.

Getting around outdoors

This section of the claim pack is about your mobility needs. It is your answers in this section which the decision maker will use to help decide whether you meet the criteria for an award of the higher rate or of the lower rate of the mobility component.

23 Do you have a physical problem that restricts your walking?

If you have a physical problem that makes walking difficult for you then you may qualify for the higher rate of the mobility component on the grounds that you are ‘virtually unable to walk’.

As a very rough rule of thumb, tribunals and decision makers tend to make awards to people who they accept cannot walk more than 50 yard/metres.

If you have a severe visual impairment you may be able to claim the higher rate of the mobility component if you are severely visually impaired. You will need to show that:

You are under 65; and

You are registered or certified as severely visually impaired; and, when wearing

glasses if necessary, either

Your visual acuity is less than 3/60; or

Your visual acuity is more than 3/60 but less than 6/60 and you have a complete loss

of peripheral vision and a central visual field of no more than 10 degrees.

24 How far can you normally walk?

The walking in question needs to be outdoors, but on level ground, not steep hills.

The question that needs to be answered here is how far you can walk, including any short stops, before you feel severe discomfort. There is no precise definition of severe discomfort, except that the law says it is less than severe pain. Can you walk at all on your worse days? Are you in severe discomfort all the time when you walk or does it begin after a certain distance? People tend to have difficulty estimating distances so, if possible, actually measure how far you can walk before you are in pain or severe discomfort. As a last resort count how many paces you can take and then measure your pace.

25 How many minutes can you walk for before you feel severe discomfort?

Try actually timing yourself rather than just guessing. Remember this is an average, so take into account your worse days.

26 Your walking speed

You may also want to use this box to explain what it is that limits your walking speed. Do you get fatigued after a very short distance? Do you get breathless? Do you experience severe discomfort or pain in your feet, legs or lower back? How long does it take you to be able to walk the same distance? A day, or much longer?

27 The way you walk

When deciding whether you are ‘virtually unable to walk’ decision makers should take into account the way in which you walk, as well as how far you can walk and how long it takes.

Do you have problems lifting your feet off the ground so that you shuffle rather than walk? Can you only use one foot, so that you have to swing yourself along on crutches or use a walking frame? Do you have a severe limp? Do your feet sometimes get ‘stuck’? Do your legs give way? Do you lean over because of POTS? Give as much detail as possible.

28 Do you need physical support?

If you need to lean on someone when you walk, perhaps because your balance is very poor or because your legs give way without warning, tick the Yes box

29 How many days a week do you have difficulty walking?

If you always have these difficulties walking then the answer is 7 days even if you don’t walk outdoors very often. If you need help less often than four or five days a week you will be less likely to qualify for DLA.

30 Do you fall or stumble when walking outdoors?

Tick Yes if you ever fall or stumble and give details below.

Why do you fall?

Explain what health condition causes the falls or stumbles. Is it problems with your knees which means they sometimes give way, extreme fatigue caused by ME, or dizziness caused by low blood pressure or POTS?

Or is dizziness or unsteadiness a side effect of medication you are taking? If you haven’t had any falls, but are worried that you might, you need to explain very clearly the reasons for your worries.

How often do you fall?

Explain roughly how often it happens and when the most recent event was.

Do you need help to get up after you fall?

Can you get up without help after a fall and if so, how long does it take you?

We think you should also give the following information, if it is relevant in your case.

Is there anything that means you are at greater risk if you fall?

Have you ever injured yourself as a result of falling or stumbling?

If so, give details. Is there any supporting evidence you can provide for your falls? For example, have you ever injured yourself and had to go to the doctor or to casualty? If so, give details and, if available, a copy of the record of your visit there. Alternatively, has anyone seen you fall or had to help you up after you’ve fallen? If so, would they be prepared to write a letter confirming what happened?

Do you use any aids or equipment?

Do you use a walking stick or a walking frame or something like this?

Why would aids or equipment not prevent you falling or stumbling?

Would sticks prevent you falling? Do you get enough warning and could you support your weight on your arms? If sticks would not help, say so

31 Do you need someone with you to guide or supervise you when walking outdoors in unfamiliar places? (This section is intended for use with people who have mental health problems.)

This page is about entitlement to the lower rate of the mobility component. Only tick No if you have read the examples on the form and read the details below and decided you don’t have any such problems. If you need someone with you because you experience panic attacks when outdoors, tick Yes. Bear in mind that this is about problems you have when you are walking outdoors in unfamiliar places, not on routes that you are used to. So, for example, if you have a visual impairment you may be fine going to work or the shops because you have done the journey many times and know the likely hazards and obstacles. But if you had to go somewhere unfamiliar, the High Street of a strange town, perhaps, would it be reasonable for you to have someone with you to, for example, warn you of hazards?

To avoid danger

For example:

  • you sometimes have falls and are unable to get up without help;
  • you have fits and need someone to monitor your condition and help you to stay safe, recover from a fit and continue walking afterwards;
  • you are deaf and need someone to help you to ask for directions on unfamiliar routes and warn you of hazards that you cannot hear, such as approaching traffic;
  • you have a visual impairment and need someone to warn you of hazards such as oncomingtraffic and to help you find your way.

I have anxiety or panic attacks

If this applies, tick

To make sure I am safe

For example:

you have ME and you need someone to support you if you become suddenly fatigued and help you to find somewhere to rest, recover and then continue walking.

you have a bowel condition and need someone to help you find lavatories or cope with the distress of an episode of incontinence whilst you are outdoors in an unfamiliar place.

Caution!

Try to make it clear what the person does, or is on hand to do, or explain why you would not have the confidence to go out without someone. If you don’t have someone to help you and you have to manage on your own, try to think how having someone with you would make things less difficult.

How many days a week?

If you don’t go out much because of your condition that’s not the point. If you would like to go out every day, then the question you should answer is how many days a week would you need help in order to do so? If you would need help every day then the answer is 7 days. If there are some days when you would not need help then give an average.

When your walking difficulties started

Your walking difficulties need to have lasted for at least three months before you will be eligible for any payment of DLA mobility component.

Your care needs during the day

This section is designed to collect evidence about your entitlement to the care component of DLA because of daytime care needs.

Even if you are claiming DLA primarily because of mobility problems, these are likely to affect your care needs too. For example, you may have difficulty moving around indoors, getting up and down stairs or preparing a cooked main meal because of difficulties with walking or standing. You may also need help to attend social or religious functions or to pursue hobbies because of mobility problems.

Even if you don’t think your needs will be sufficient to qualify for an award of the care component it is worth completing any pages relating to activities that you do have problems with. This is because your claim may otherwise look inconsistent: you have said you have problems with mobility and yet you also say you have no problems with stairs, moving around indoors or pursuing hobbies and pastimes.

35 Do you usually have difficulty or do you need help getting out of bed in the morning or getting into bed at night?

If you stay in bed and need help getting in and out repeatedly during the day, including the evening, then give more details in the ‘anything else you want to tell us’ box on this page.

Difficulty getting into bed

Do you need help pulling back the covers, sitting on the bed, getting your legs into bed, arranging the covers and pillows once you are in bed? Do you need help transferring from a wheelchair to the bed?

Difficulty getting out of bed

Do you spend a long time wanting to get out of bed but unable to because of pain, stiffness or the effects of medication which prevent you waking properly? Do you need medication or tea or something else brought to you before you can get out of bed? Does it hurt to move your limbs, to sit upright or put weight on your feet? Do you have to hold onto someone or something when getting in or out of bed? Do you have to get out of bed in stages, taking rests because of fatigue or stiffness and to gather your strength? Might you fall when you stand, perhaps because you are unsteady on your feet or because you get dizzy? Do you need help transferring to or from a wheelchair? Do you put on slippers and a dressing gown or other clothing rather than putting on your day clothes when you first get out of bed. If you need help with doing this either include the information in the box at the bottom of this page or include it in the Dressing and undressing section of the form.

I need encouraging to get out of bed in the morning

Are you sometimes too exhausted or in too much pain or discomfort to get out of bed without someone to encourage you? Does someone – children, partner, neighbours - look in on you to make sure you have got up? If so, tick the box and give more information in the box at the bottom of the page.

I need encouraging to go to bed at night

As with getting out of bed, are you sometimes too exhausted or in too much pain or  discomfort to get up the stairs and into bed at nightthe bottom of the page.

 ‘How often?’ and ‘How long each time?’ boxes

Next time you get out of bed and into bed try timing it. Or if someone helps you, ask them to time it. If you have to wait for your limbs to become less stiff or for medication to wear off enough for you to become properly awake, then getting out of bed should include the time from when you want to get out of bed to the time when you are actually able to begin getting out of bed.

Bear in mind that people without health conditions can get out of bed as soon as the alarm clock goes off. This is what you should be comparing your time to.

If you spend all or most of the day in bed, include all the times you need help in and out of bed.

Is there anything else you want to tell us . . .

Do you use any aids or appliances to help you with getting in and out of bed? E.g. motorised

bed raiser, walking frame by the bed. If so, make sure you have given details at question 22.

36 Toilet needs

Do you usually have difficulty or do you need help with your toilet needs?

Only tick No if you have read the details below and decided that you don’t have any  difficulties with this activity.

Difficulty with toilet needs

Do you need someone to help or guide you to and from the toilet?

Do you have difficulty transferring from a wheelchair to the toilet and back again?

Do you have difficulty undoing and doing up buttons and zips; pulling trousers and underwear down and back up; getting on or off the toilet?

Do you sometimes not make it to the toilet in time because of continence or mobility problems?

Even if you do make it to the toilet in time are your bowel motions very violent, bloody or accompanied by a lot of mucus so that you have to wash or shower afterwards?

Do you have difficulty wiping yourself after a bowel movement?

Do you have problems cleaning the toilet afterwards and does it need doing immediately to prevent it becoming much more difficult to do?

Do you need someone to check your clothing after using the toilet?

 ‘How often?’ and ‘How long each time?’ boxes

To work out how often you need help you need to make an estimate of how many times a day you use the toilet. If this varies according to your condition then either give a range: for example, 4-8 or give an average, for example, 6.

When working out how long each time, include time getting to and from the lavatory, time needed to wash yourself and to clean the toilet if necessary. If you use a bottle or commode but need someone else to empty and clean it immediately afterwards, include the time taken to do that here. Again, if the length of time varies then give an average or a range

Is there anything else you want to tell us . . .

I have problems with this activity because of my Inflammatory Bowel Disease. Many days I have to stay at home near the toilet all the time because I get violent diarrhoea without any warning. I often have to go to the toilet five or six times an hour. This leaves me completely exhausted, so that I can hardly stand or think straight. It also makes my anus so sore that I am in constant pain, especially when walking and sitting.

Because I suffer from very violent diarrhoea the toilet often needs cleaning after I have used it, but sometimes I am too exhausted to do so. I also get extremely bad abdominal pains which can double me up and can make it very difficult for me to get to the toilet. Sometimes I don’t make it to the toilet in time and I have to shower and change afterwards. I often get very upset and depressed when my IBS is at its worst, life doesn’t seem worth living. If someone is with me they can help me to get to and from the toilet, help me clean up the toilet, wash and change if necessary and reassure me when I become very distressed.

Caution!

The DWP very often argue that people who have difficulty getting to the lavatory or who suffer from urgency or incontinence could use a bottle or a commode

Please do not suggest that I should use a bottle or commode. I would find it deeply embarrassing and undignified have to sit in a room with a used commode or urine bottle during the day or night. It is accepted that prisoners in jail should no longer be forced to do such things and I do not believe I should be either.

Reminder

Do you use any aids or appliances in connection with your toilet needs such as a rail to hold onto when you get on and off the toilet. A bottle or commode also count as special equipment.

37 Washing, bathing, showering or looking after your appearance

Do you usually have difficulty or do you need help with washing, bathing, showering or looking after your appearance?

Difficulty with looking after my appearance

This may include things like: combing, brushing or styling your hair, including using a hairdryer; seeing to do your hair; putting on clothing after washing or bathing; applying make-up; checking your appearance; applying cosmetics because of a skin condition or scarring; using sanitary towels or tampons.

Difficulty getting in and out of the bath / washing and drying myself or looking after my personal hygiene / using a shower.

Things that you need to think about include difficulties you have with:

  • getting to and from the bathroom;
  • removing clothes in order to wash or bathe;
  • turning taps on and off;
  • checking water temperature;
  • reading the labels on bottles and aerosols;
  • bending to the sink;
  • getting in and out of the bath or shower, including transferring from a wheelchair;
  • standing in the shower;
  • reaching down to wash, rinse and dry your legs;
  • reaching up to wash, rinse and dry your face and hair;
  • reaching behind you to wash, rinse and dry your back;
  • using a razor to shave your face, legs or underarms;
  • seeing to shave;
  • brushing your teeth or cleaning your dentures;
  • cleaning your nails;
  • making sure you don’t fall in the bath or shower; keeping you safe if you fits or blackouts which make bathing or showering dangerous;

Encouraging to look after my appearance.

Do you need encouragement to look after your appearance?

Encouraging or reminding about washing, bathing, showering, drying or looking

after my personal hygiene.

Do you need encouraging to wash, bathe, shower, etc. because it is painful or distressing for you?.

‘How often?’ and ‘How long each time?’ boxes

Do you need to wash or bathe more than once a day, perhaps because of excessive sweating or incontinence or because bathing helps relieve pain in your joints or your back? If your condition varies give an average or a range: for example, 2-4, or give an average, for example, 3 Remember that ‘How long’ includes the time to get undressed, bathe or shower, dry and dress again and includes any time spent resting in-between or recovering afterwards. If you’re not sure how to separate, for example, time needed to wash and dry yourself and time needed for help to shower then add all the times together and just put a single time in one box, with the word ‘in total’ below.

Is there anything else you want to tell us . . .

Do you use any aids or appliances in connection with washing and bathing? This could include rails to help you get in and out of the bath, a seat in the bath, a bath hoist or a walk in bath. If so, make sure you have given details at question 22.

38 Dressing or undressing

Do you usually have difficulty or do you need help with dressing or undressing?

Putting on or fastening clothes or footwear / Taking off clothes or footwear

This includes putting on and taking off nightclothes, underwear, skirts, trousers, socks, blouse, shirt, coat, hat. tying and untying shoelaces, fastening and unfastening your bra and any other problems with buttons, zips, laces and braces

Choosing the appropriate clothes

For example, do you have a visual impairment which makes it difficult for you to select clothes to wear, including making sure that they are clean, matching and appropriate to the weather and the occasion and that nothing is inside out or back to front?

Encouraging or reminding to get dressed or undressed / change my clothes

Do you need encouragement to dress or undress because it is painful for you? If so, give details.

‘How often?’ and ‘How long each time?’ boxes

Do you need to dress or undress more than once a day because of, for example: excessive sweating; continence problems; changing dressings or other medical procedures; needing to sleep during the day? Do you go outdoors several times a day and need help putting on and taking off outdoor clothing

Try timing yourself next time you get dressed and undressed. Remember to include any time spent resting if you need to do so.

Is there anything else you want to tell us . . .

I have problems with this activity because of ME.I suffer pain in my arms upper back and neck when trying to put on anything with sleeves, such as shirts, jackets and coats and when pulling on t-shirts or jumpers over my head. Pulling on underwear, trousers, socks and shoes also causes pain in my back, neck and arms. I find the pain completely exhausting and often have to stop and rest several times while dressing. My son usually helps me to dress and undress, this doesn’t stop it being painful, but it does make it less so. On days when he goes out before I am up I often end up wearing my dressing gown until lunch time because by then my limbs are less stiff and painful and I can manage to dress myself, though still with pain. If someone is with me they can help me put my arms in sleeves, pull clothing over my head, pull up trouser and underwear and do my socks and shoes for me.

Reminder

Do you use any aids or appliances in connection with dressing and undressing? This could include such things as button hooks and shoe horns. If so, make sure you have given details at question 22.

39 Moving around indoors

Do you usually have difficulty or do you need help with moving around indoors?

This is a very important activity. If you have difficulty or need help frequently and throughout the day with moving around indoors then you may be entitled to the middle rate of the care component.

Note: indoors can include your home and your workplace, school or college if you attend one. If you need help moving around indoors when you are pursuing leisure activities, such as going to the cinema or a restaurant, give details of these on the ‘hobbies and interests’ page

Difficulty walking around indoors

Do you have to hold onto furniture and lean on walls as you move about indoors? Do you need support from another person? Do you have to move very slowly? Do you need someone to open and close doors? Do you need someone to push or manoeuvre your wheelchair?

Difficulty going up or downstairs

Do you have to stay downstairs, or upstairs, all the time because you can’t use stairs? Do you have to be carried up and down stairs? Is it difficult/painful/exhausting going up or down stairs?

Do you need someone to support you? Do you need someone with you in case you become dizzy or unsteady on your feet? Do you have to go very slowly, one step at a time? Do you nee someone to help you on or off a stairlift?

Difficulty getting in and out of a chair.

Do you take a long time to get in or out of chairs? Do you need someone to help you off cairs

and sofas? Have you developed special techniques such as rolling off sofas onto your knees?

Do you have to hold onto things to get upright? Are you sometimes too exhausted to get up? Is rising from sitting painful? If you generally stay in bed during the day, consider crossing out chair and putting bed instead.

Difficulty transferring to and from a wheelchair.

It may not take long to transfer you to and from a wheelchair, but if you need help frequently and throughout the day with transfers then this may get you an award of the middle rate of the care component. So make sure you think of all the times it may happen on an average day.

I need encouraging or reminding to move around indoors.

Do you need encouragement to move about because you find it painful to do so? If so, tick this box.

Do you have to get up and down a lot because of pain or stiffness? If you need help frequently and throughout the day with things like getting in and out of chairs and moving around then this alone may get you an award of the middle rate of the care component. So make sure you think of all the times you may need this sort of help on an average day. If this varies according to your condition then either give a range: for example, 12-18 or give an average, for example, 15. You may need to keep a record for a day to discover just how many times you do carry out all these activities. If this is too difficult you may wish to give an answer such as ‘Frequently’, ‘At regular intervals throughout the day’, or ‘As often as possible’.

Is there anything else you want to tell us . . .

 “Because of my ME find it difficult and painful to get up from chairs and sofas unless someone pulls me up. I can go upstairs, but only very slowly and with a lot of throbbing pain in my legs and back which continues for up to an hour after I’ve climbed the stairs. I can’t come down stairs safely as my knees sometimes give way without any warning. If there is no-one to hold onto I come downstairs on my bottom. I walk to the kitchen and toilet and back, but slowly and with throbbing pain in my legs and back. If I move about the house much in the day it leaves me feeling exhausted and I sometimes have take additional pain killers, although I don’t like doing this. About three weeks ago I fell on the floor whilst trying to get up from the sofa without help. I had to pull myself up holding onto furniture. It took about 2 minutes to get to my feet. I wasn’t injured, but it left me feeling very shaky and upset and damaged my confidence. If someone is with me they can help me on and off chairs and support me on the stairs.”

Reminder

Do you use any aids or appliances in connection with moving around indoors? This could include such things as a stair lift, raised chair or rails. If so, make sure you have given details at question 22.

40 Do you fall or stumble ?

f you experience falls you may be eligible for DLA on the basis of needing continual supervision to avoid danger. Alternatively, you may need attention with specific activities such as using stairs, getting out of chairs or getting out of the bath which will count towards your DLA entitlement.

What happens when you fall or stumble?

Tell us why you fall or stumble and if you hurt yourself.

Explain what health condition causes the falls. For example, extreme fatigue caused by ME, or dizziness caused by low blood pressure? Or is dizziness or unsteadiness a side effect of medication you are taking? If you haven’t had any falls, but are worried that you might, you need to explain very clearly the reasons for your worries.

Have you suffered any injuries as a result of falls indoors? If so give details.

Do you need help to get up after a fall?

Can you get up without help after a fall and if so, how long does it take you? If you can’t get up at all without help, or it takes a long time, then you are more likely to need attention or supervision.

When did you last fall or stumble?

Even if this was some time ago, give details here.

How often do you fall or stumble indoors

The more frequently you fall and stumble and the more recently it has happened, the more likely you will be considered to need attention or supervision.

Additional evidence we suggest you consider giving

Although the information below is not asked for, it may make a difference to the success of your claim.

What help can someone give you when you fall or stumble?

Can they steady you so you don’t fall in the first place? Help you to your feet if you do fall? Help you recover from the effects of falling?

Are there precautions you can take?

Would sticks prevent you falling? Do you get enough warning and could you support your weight on your arms? If sticks would not help, say so.

The decision maker may argue that you should remove or pad all sharp or hard edges so that the risk of injury if you fall indoors is small. Is this a reasonable requirement in your case? If not, explain why.

Example

I cannot make my home safe to fall in because there are there too many sharp edges on walls, work surfaces, fireplaces, furniture, television set, windowsills, sinks, toilet cistern, doors, door handles, fridge, cooker, chairs, tables, etc. for it to be practical to pad them all and I cannot remove these items because I need them. I don’t know what materials I could use for padding, particularly on surfaces that get hot or wet or need cleaning regularly for hygiene reasons. I don’t know who would carry out the work to a sufficient standard for free and I could not afford to have it done.”

Is there a pattern to your falls?

For example, do they occur mostly in the morning when you first get up, only when you reach up to high shelves or are they entirely unpredictable? The less predictable your falls the more likely you are to need attention or supervision. So if your falls can happen anywhere at any time then it’s important that you say so.

If your falls are predictable, the decision maker is likely to argue that you can avoid the activities that cause falls or take precautions to reduce the likelihood of injury. For example, if you only fall when reaching into high cupboards the decision maker is likely to say that you should simply avoid this activity. However, the decision maker should not suggest that you take unreasonable precautions, such as staying in the same chair or same room all day or wearing a crash helmet.

Supporting evidence

Is there any supporting evidence you can provide for your falls or stumbles? For example, have you ever injured yourself and had to go to the doctor or to casualty? If so, give details and, if available, enclose a copy of the record of your visit there. Has anyone seen you fall or had to help you up after you’ve fallen? If so, would they be prepared to write a letter confirming what happened?

41 Cutting up food, eating or drinking

Do you usually have difficulty or do you need help with cutting up food, eating or

drinking?

I have difficulty eating or drinking

This could include: holding and using cutlery; getting food from a plate or bowl and into your mouth; drinking from a cup or mug.

Do you have a visual impairment which means that you need someone to tell you what food is on your plate or available in a canteen or café? Do you need someone to tell you where on your plate the food is and where on the table, sauce, salt, pepper, sugar, cutlery and drinks are? Do you need someone to check if you have spilt food or drink? Do you need someone to help you clean up if you have?

I have difficulty with cutting up food on my plate.

As well as cutting up food this could include removing bones, fat or rind.

I need encouraging or reminding to eat or drink.

Do you need encouraging or coaxing to eat because, you have a bowel disease or digestive tract disorder and you associate food with pain, discomfort and illness? Do you need help monitoring what you eat or reminding to eat or drink supplements? Do you have special dietary regimes that you need encouragement to stick to? If so, tick this box.

 ‘How often?’ and ‘How long each time?’ boxes

If you have to eat frequent small meals throughout the day make sure you include them all

If the length of time varies then give an average or a range

Is there anything else you want to tell us . . .

For example, have you suffered from malnutrition or severe weight loss as a result of not eating?

Example

Because of my visual impairment I need someone to help me at mealtimes. I need help to cut up my food and remove bones from fish and chicken. I need someone to tell me where food is on my plate and where my drink is. When I am at work I also need someone to tell me what is on the menu in the canteen and to help me collect my food and carry it to an empty seat at a table. I also need someone to tell me if I have spilt food or drink and to help me clean it up.

Reminder

Do you use any aids or appliances in connection with eating and drinking? This could include such things as special cutlery or a feeding cup. If so, make sure you have given details at question 22.

42 Taking your medication or medical treatment

Do you usually have difficulty or do you need help with taking your medicines or

with your medical treatment?

I have difficulty with taking my medication.

This could include things such as:

  • taking the right medication at the right time, including reading labels, opening containers,
  • measuring amounts;
  • swallowing pills;
  • using an inhaler;
  • applying creams or lotions;

I have difficulty with my treatment or therapy.

Give details of any problems you have, or help you need, with things such as:

  • changing dressings;
  • checking blood sugar levels;
  • administering injections;
  • being massaged or having limbs manipulated;
  • seeing an occupational therapist;
  • following a medically prescribed exercise regime;
  • having physiotherapy;
  • seeing a psychiatrist or counsellor;
  • having speech therapy;
  • understanding what a doctor or other health professional is saying.

I need encouraging or reminding to take my medication.

Do you need reminding to take your medication or food supplements because your concentration is poor or because you get very tired and forgetful as a result of, for example, ME? Does your medication have distressing side effects which makes you reluctant to take it? Do you need someone to monitor what you take? If so, tick this box.

I need encouraging or reminding about my treatment or therapy.

If you need encouraging or reminding about treatment or therapy because, for example, it is painful or exhausting tick this box and give details in the box at the bottom of the page

Is there anything else you want to tell us . . .

For example, you may be having an ‘alternative therapy’, such as homeopathy, which the decision maker may not accept as medical treatment. However, an increasing number of alternative remedies are being recognised by the medical profession, so it is worth including details here if you have problems or need help with it, particularly if the treatment was recommended by your GP. But in addition, give details in the hobbies, interests and social activities section: if your alternative therapy is not accepted as medical treatment then it should be accepted as a leisure activity with which you reasonably require help.

43 Communicating with other people

Do you usually need help from another person to communicate with other people?

If you have problems with concentration and tire easily put down the details here. Do you often say the wrong word which makes it very difficult for others to understand you?

Difficulty with understanding people I do not know well / being understood by people who do not know me well / concentrating or remembering things / answering or using the phone / reading letters, filling in forms, replying to mail / asking for help when I need it.

Do you have difficulty reading letters, newspapers, bills, memos, text on computer monitors or mobile phones, instructions at work or books at school, because you can’t concentrate ?       

Do you need someone to make or take phone calls for you?

44 How many days a week do you have difficulty or need help with the care needs

you have told us about on questions 35 to 43.?

This question is about all the care, rather than mobility, needs you have given details of so far in this form.

Remember this is about the difficulties you ‘usually’ have – not your best or your worst days. If you have difficulties all the time then the answer is 7 days. If you do not have difficulties all the time, then try to give an average that take into account your best and worst periods. In order to count, the difficulties you have need to be for the majority of the time. So, as a general guide, if you have difficulties less often than four days a week you will be less likely to qualify.

45 Hobbies, interest, social or religious activities

Do you usually need help from another person to take part in hobbies, interests, social or religious activities?

If you do engage in social and leisure activities, or would like to if you had help, on most days then they may have a considerable influence on your DLA award because, even if decision makers ignore them, tribunals do not. They may be particularly important in showing attention needs throughout the day, for example, which could make the difference between getting lower and middle rate care.

At home

This can be hobbies, or pastimes or activities that you used to do, still do or would like to take up.

For example, could you do gardening, decorating or DIY if you had someone to help with the bits that require heavy lifting, bending, stretching or kneeling? Do you have a visual impairment that means you need help with reading newspapers, magazines, books or letters? Do you have problem communicating with visitors?

Make sure you explain what help you get or would need in order to carry out this activity or activities. Would someone, for example: lift things; climb ladders; fetch things; steady you;

encourage you; get out or put away equipment; read to you; tell you what’s happening in a TV programme or video; read crossword clues to you?

How often and how long

If it is something you would do more than once a day then say how many times a day as well as how many times a week.

Do you need help all the time you are doing this activity or just for part of it, such as setting things up and putting them away?

When you go out

This could include include: going shopping for pleasure (rather than for necessities), walking, holidays, cinema, theatre, restaurant, pub, nightclub, library, bingo hall, post office, doctors, hospital, physiotherapist, alternative therapists, counsellor, church, evening classes, local park, day-trips, taking the children to and from school, visiting friends and relatives, swimming, gym, sports centre.

Make sure you explain what help you get or would need in order to carry out this activity or activities. Do you need someone to help you walk to and from places? Do you need someone to carry things for you, to lean on, to help you get to and from the toilet? Do you need someone to offer you support and reassurance because of the possibility of a fall or an episode of incontinence?

How often and how long?

If it is something you would do more than once a day then say how many times a day as well as how many times a week. Include the time needed to accompany you there, stay with you throughout the activity and accompany you back, if this is what is required.

46 Supervision from another person

Do you usually need someone to keep an eye on you?

This is a very important page because you may be entitled to the middle rate of the care component if you need someone to keep an eye on you during the day.

If ‘Yes’, how long can you be safely left for at a time?

During the day the supervision needs to be continual, which means that you need someone available for most of the time, any breaks would have to be very short. If you cannot predict when help might be needed, for example because you have fits or falls without warning, then the answer should be ‘’Zero’.

To prevent danger to myself or others.

Do you need someone with you during the day in case you fall, especially if you are unable to get up again or because you have a condition such as osteoporosis, so that the result of a fall could be very serious?

If you care for a young child and your condition means that they might be in substantial danger if, for example, you had a fall, then this may be sufficient for you to qualify.

I may have fits, dizzy spells or blackouts.

Do you have dizzy spells which leave you in danger of falls? See question 53 for more about this.

I may get confused.

If you have ‘brain fog’ you may be confused many times in the day.

Is there anything else you want to tell us . . .

The reason you need someone with you must be to avoid substantial danger to yourself or to others. Describe here what the danger to you or someone else would be. Have things happened in the past that posed a substantial danger to you because you weren’t supervised?

For example, have you had a fall and been stuck for a long time because there was no-one to help you up? Or has a substantial danger only been averted because there was someone there? If so, give details here.

48 Preparing and cooking a main meal

Would you have difficulty preparing and cooking a main meal for yourself?

If, because of your ME you can’t prepare a cooked main meal for yourself then this by itself entitles you to the lower rate care component of DLA.

Remember, this is a hypothetical test: this means it doesn’t matter whether you know how to cook or ever do cook. What matters is whether, if you had the ingredients, you would be physically and mentally able to carry out all the activities connected with cooking a main meal.

And it’s a traditional meat, or soya, and two veg. type of meal. Reheating something, making a sandwich or putting something in the microwave doesn’t count as preparing a cooked main meal.

But you can’t include problems with doing the shopping in this test, you have to imagine that’s already been done.

I have difficulty or need help planning a meal, for example, measuring amounts, following a logical order of tasks, or telling when food is cooked properly.

In addition, you may have problems with:

  • choosing the ingredients;
  • making sure they are fresh and not past their sell by date;
  • reading labels, instructions and recipes;
  • timing the different tasks so everything is ready at once and nothing is burnt or underdone;
  • remembering to add all the ingredients

I have physical difficulties, for example, coping with hot pans, peeling and chopping vegetables, or using taps, switches, knobs, kitchen utensils or can-openers, or carrying, lifting, standing or moving about to perform tasks.

Other physical difficulties might include:

  • putting pans on and getting them off the hob;
  • adding seasoning;
  • stirring and pouring;
  • telling if water is boiling or simmering;
  • telling if fat or oil is the right temperature;
  • draining vegetables;
  • cutting up meat and vegetables ready to serve;
  • transferring food from pans to the plate;
  • putting the plate on the table or wherever you are going to eat.

I would be at risk of injury preparing a cooked main meal for myself.

Is it safe for you to handle hot pans or sharp knives?

Would you be able to tell if a paralysed part of your body was in contact with a hot surface? Can you safely sit or stand safely at the cooker?

Can you manoeuvre a wheelchair safely in your kitchen?

Does heat in the kitchen make you dizzy?

Is there anything else you want to tell us . . .

For example, does the smell of food make you nauseous so you avoid cooking?

You might have problems getting on or off a stool; you might have dizzy spells and would be in danger of falling off the stool; you might have difficulty putting the stool in position or there might not be room to use it safely in your kitchen.

Help with your care needs in the night

This is a very important section because help you need at night, if it meets the criteria, leads to an award of the middle rate of the care component even if it is for much shorter periods than during the day.

Night is from about 11.00pm to 7.00am or ‘when the household closes down for the night’.

49 Do you usually have difficulty or need help during the night?

Difficulty turning over or changing position in bed.

Do you need help changing position or rearranging the bedding and pillows to help with breathing difficulties?

Difficulty sleeping comfortably.

Do you need a hot water bottle making for you during the night or painful areas of your body

massaged? Do you become distressed and need comfort and reassurance to help you go back

to sleep?

Difficulty with my toilet needs.

See the information at question 36 in this guide. In addition, you may need someone with you when you go to the toilet at night because you have to walk past the stairs and there is a danger that you could fall. Alternatively, you may use a commode during the night – in which case do you need help with this?

Difficulty with my incontinence needs.

See the information at question 36 in this guide. In addition, do you sometimes have an episode of incontinence and need someone to strip the bed, help you wash and change, put on fresh bedding and put the soiled bedding in to soak or wash?

How often and how long – toilet and incontinence

To work out how often you have difficulties you need to make an estimate of how many times at night you use the toilet.

When working out how long each time, include time getting to and from the lavatory, time needed to wash yourself and to clean the toilet if necessary. If you use a bottle or commode but need someone else to empty and clean it immediately afterwards, include the time taken to do that here.

Difficulty taking medication.

Do you need someone to bring you medication, drinks or anything else during the night?

Is there anything else you want to tell us . . .

Example

I have problems when I am in bed because of ME. I have to sleep propped up on pillows so that I can am not in pain. But in the night I slip down on the pillows and then I wake up in pain. I can’t sit upright again or rearrange my pillows without help. I also need reassuring and calming down in order to get back to sleep because I get very distressed. . I need my partner to help me sit up, rearrange the pillows and reassure me.

If you say that you need someone to bring you medication, drinks or anything else during the night the decision maker will suggest that these things can just be left within reach in case you need them. If there is a reason why this would not be practical you should explain why in this box. For example, you may not be able to take the medication or the drink without physical help or you may be too confused or distressed to do it for yourself.

Reminder

Do you use any aids or appliances in connection with help at night? For example, a bed raiser, special pillows If so, make sure you have given details at question 22.

51 Watching over you at night

Do you need someone to watch over you?

This is a very important page because you may be entitled to the middle rate of the care component if you need someone to watch over you to avoid substantial danger to you or someone else, even for short periods at night. Only tick No if you have read the examples on the form and read the information below and decided you don’t have any such problems.

To prevent danger to myself or others.

For example, do you need someone to be awake when you go to the lavatory because you are unsteady on your feet due to medication, weakness or fatigue?

How many times a night does another person need to be awake to watch over you?

At night the supervision needs to be at least twice, and probably three times, a night or for at least twenty minutes to count.

How long, on average, does another person need to be awake to watch over you at night?

At night the supervision needs to be for at least twenty minutes or at least twice, and probably three times, a night to count.

Is there anything else you want to tell us . . .

It’s important that you give as much information as possible if you’re hoping to get an award on watching over grounds. See the information about question 46, supervision from another person, for more about the kind of evidence you need to provide.

53 Please tell us anything else you think we should know about the difficulty you have or the help you need.

Use this space for additional information about difficulties you have.

54 When your care needs started

This may be many months or years before you were actually diagnosed. DLA is only payable when your problems have lasted for at least 3 months.

About other benefits

58 About other benefits you are getting or waiting to hear about.

This section asks whether you, or someone else in your household, is getting any of a range of other benefits or tax credits (DLA will be paid in addition to all of them, with the possible exception of Constant Attendance Allowance, where there may be some overlap). It also asks whether you have been turned down for, or stopped receiving, DLA or attendance allowance in the last 3 years.

60 Statement from someone who knows you

You don’t have to get anyone to complete this page, but good supporting evidence always helps a claim.

Photocopy this sheet and give the copy to the person you want to complete it. Or if you prefer, take several copies and give them to a number of different people to complete. If you are happy with what they write staple the sheets to this page. If you are unhappy with what someone has written, give them another blank copy and ask them if it would be possible for them to change what they have written. If this is not possible get someone else to fill in the statement instead.

If possible one of the people who completes this statement should be a professional involved in your care, such as your GP, specialist or a nurse. Make an appointment to see that person so you can answer any questions they might have and take the Health Professionals Sheet at the back of this guide with you. Ask the person to complete the statement there and then if possible. If they can’t, or wish to write a longer report, ask them to send it to you and tell them when you need to have it by. Don’t delay returning the form if you don’t receive a statement in time, send any additional evidence afterwards if necessary.

You may also want your partner or main carer to complete one of these sheets.

61 Please tell us anything else you think we should know about your claim.

If there is information about your condition, or the way it affects you, that you think is relevant but you haven’t been able to include elsewhere, put it on this page. Or if you have had hospital admissions or surgery that demonstrates the seriousness of your condition, you can give more details here. Below are some other suggestions about what you might put on this page.

Looking after young children

If you care for a young child but your condition means that you need help or supervision to do so then you may be able to claim DLA on this basis You can give details of the extra help or supervision you need on this page

Middle rate care

Although the claim pack asks lots of questions about how often you need help and how long for, it doesn’t ask you about when in the day you need help. However, this information can be very important. If you need help for at least an hour a day, but only in one chunk, or only at the beginning and end of the day – perhaps help with washing, dressing and undressing – you are likely to qualify only for the lower rate of the care component. But if you need help  frequently throughout the day’, even for less than an hour, you may receive the middle rate of the care component instead.

‘Frequently’ has been defined for benefits purposes as meaning ‘several times – not once or twice’, but there is no clear definition of what ‘frequently throughout the day’ means. The decision maker has to decide each case on the facts: it may be helpful if you make those facts as clear as possible. So, if you wish, you can use this page to list when you need help on an average day. For example:

Help I need throughout an average day

7.30am help with getting out of bed washing and dressing.

8.30am help with cutting up food for breakfast

12.30pm help with cutting up food for lunch

2.30pm (or thereabouts) help with putting on shoes and coat and help to get either to the

library, to visit friends or relatives, or to visit the park or the shops for leisure and

just to get out of the house.

4.00pm help removing outdoor clothing

6.00pm help with cutting up food for evening meal

10.30pm help with washing, undressing and getting into bed

Help with shopping, cleaning and cooking

The law on help with shopping, cleaning and cooking is confused. On the one hand, social security commissioners have decided that shopping, cleaning and cooking are not sufficiently personal services that they can be counted towards your DLA entitlement. (Although you may get lower rate care if you pass the cooking test, see ‘Preparing a cooked main meal for yourself’.

And if you go to the shops as a leisure activity, rather than to shop for necessities, that may also count: see Help you need when you go out during the day or in the evening). But, generally, if you need someone to do your shopping, cooking or cleaning for you, this isn’t relevant to your claim.

On the other hand, courts have also decided that if it’s reasonable for you to do shopping, cleaning and cooking yourself, then if you need help to actually carry out those tasks, the help you need can be counted. So if you have ME, for example, but wish to cook and clean your home yourself because that is part of living an ordinary life, then you may be able to include any help you need towards your DLA entitlement.

Because there is nowhere else on the form to give information about the help you need with shopping, cleaning and cooking you may want to do so here.

Dizzy spells, blackouts, fits, seizures

There is no longer a specific page on the form for giving details of dizzy spells, blackouts, fits or seizures. We suggest that you include the details below on this page or on an additional sheet.

Describe the problems you have and the help you need

Explain what health condition or medication causes the attacks. (We use the word ‘attacks’ here to cover a wide range of symptoms, such as fits, angina, fainting and dizziness).

Say whether you get any warning of the attacks. If you do, what sort of warning do you get? Is it clear and reliable enough to allow you to make yourself safe before an attack occurs?

Give details of how long the attacks last. Are they only momentary or do they last longer?

Also say roughly how frequent the attacks are. Do they occur most days? Do they occur several times in one day and then not happen again for some time? Do they have any pattern at all? When did the last one happen? Is there a particular time of the day when the attacks happen? Do they only happen when you are in bed? Or only during the day, or both?

How severe are the attacks? Do you lose consciousness? Do you have episodes of incontinence?

Have you suffered injuries during the attacks? For example, have you had falls, concussion, cut or bitten yourself? Give details in this box.

Have you injured anyone else during the attacks? How did it happen and how severely were they injured?

What happens after the attacks? Are you confused, dazed, distressed, exhausted or aggressive? How long before you are fully recovered?

Do you care for a small child? Might the child be at risk if you have an attack whilst caring for them? (If so, you may be eligible for DLA on the grounds of requiring continual supervision to avoid substantial danger to others).

What help can someone provide? Can they make sure you don’t injure yourself or someone else during an attack? Can they help you cope with the after effects of an attack, such as confusion, fatigue or incontinence? Can they give you medication?

Day or night?

Do the attacks only happen during the day or only at night or both?

The importance of supporting evidence

As well as your claim pack the decision maker has to take into account any other evidence you provide, this includes additional evidence from you and evidence from other people.

Medical evidence

This can make an enormous difference to whether your claim succeeds. Detailed evidence from health professionals such as your GP, or consultant if you have one, may also mean that your claim is dealt with more quickly and that you are less likely to have a visit from a DWP doctor. (Always inform your GP that you are making a claim for DLA as it is quite likely the DWP will contact her or him without telling you first, even if s/he has very little contact with you).

So, ask the health professional(s) most involved in your care if they will write a letter supporting your claim. Make an appointment to see them so you can answer any questions they might have and take the health professionals sheet at the end of this guide with you. Ask them to send any letter to you so you can keep a copy (and if necessary ask them to change anything you think is inaccurate or unhelpful). Remember: it is up to you to decide what evidence you submit. Do not feel obliged to use a letter that may not be helpful or might actually harm your case.

Caution!

Doctors are under no obligation to provide you with a letter of support for your claim. Some may refuse to supply you with a letter, others may only do so only if you pay. If you are eligible for Legal Help (what used to be called legal aid) some solicitors and advice agencies may be able to pay for medical evidence for you.

Obtaining a PCA or WCA report

If you have had a benefits medical recently – say in the last six months – as part of your

Personal Capability Assessment to decide if you were capable of work, it may be worth obtaining a copy of the doctor’s report. Phone, or preferably write, to the office that deals with your incapacity benefit/income support and tell them that you wish to be sent a copy of the medical report and any other evidence used to make a decision in relation to your incapacity for work. (Other evidence might include, for example, a report from your GP or other health professional).

You do not have to give any explanation as to why you want the documents: under the Data

Protection Act the DWP has a duty to provide you with the documents you ask for.

If the report supports what you are saying in your claim pack than there is nothing to prevent you submitting it as supporting evidence for your claim. However, you need to read it very thoroughly before you do so as it’s quite possible that some of the evidence in it will be supportive and some of it will not. If at all possible get advice from a welfare rights specialist about whether to submit the report. If you can’t get professional advice and you’re in any doubt, it’s probably best not to submit it.

However, bear in mind that the claim packs asks if you had a recent medical for any other benefit, so it’s entirely possible that the decision maker will get a copy and use it as evidence in any case.

Non-medical evidence

Carers, friends or relatives who accompany you when you go out, help you up and down stairs, accompany you to social occasions or give other sorts of support, can write letters explaining what they do. They should give the letter to you so that you can keep a copy. If it says things that you think are unhelpful, then ask the writer to change them or simply do not submit the letter.

Whatever you do, don’t feel obliged to submit a letter just because someone has been kind enough to write it. A letter that says the wrong things can be very damaging to your claim.

Keeping a diary

A diary kept for at least five days detailing all the things you have problems with, cannot do unless you have help or cannot do at all is very useful. If you keep a diary before you fill in your form it can make the job a lot easier. In addition, you can send it in with your claim form as additional evidence. But beware: as ME is a fluctuating condition then don’t keep a diary when you’re having a better spell, it’ll give a very misleading impression.

A diary may also prove invaluable if you need to attend a tribunal as it will be evidence of what problems you had at the time you made your claim. Also, tribunals are very keen on hearing a day by day account of the sort of tasks you perform and the things you find difficult, you will be asked about these if you have a hearing.


If you are not awarded DLA and you think you should qualify, please appeal. You have one month to complete and send off a GL24 form 'If you think our decision is wrong'. If you have had professional help, let them know immediately.


N.B If you receive mid care and think that you should be on high care, or receive low care and think that you should be on mid care, be aware that appealing may leave you with no award at all. Decisions can give you less as well as more. Take professional advice and see whether they think it's worth appealing the decision.

Help for you after you complete the form.

1.For information about what to do after submitting a DLA form and how to appeal against a DWP decision see the A4U website in their publications/leaflet section.

2.For more information about appealing, see the Justice website - information about appealing to a tribunal,or the Disability Rights web help http://www.disabilityrightsuk.org/appeals-and-mandatory-reconsideration.