Claiming PIP

• PIP is a payment to help with extra living costs if you have a disability or long-term condition and difficulty in doing everyday tasks or getting around because of your condition.
• You can get PIP whether you are working or not. It doesn’t depend on income, savings or who you live with.
• PIP doesn’t have a negative effect on any other benefit you claim. If you have a carer, they may be able to claim extra money too.
• To claim PIP, you will need to fill in a form about how your condition affects you. You may then be invited to have an assessment with a health professional. Your claim will be assessed using a points system.
• Whether you qualify for the daily living component, the mobility component or both depends on how much help you need because of how your condition affects you.
• You will get a letter to say whether you have been awarded PIP, at what rate and for how long. You can challenge this decision.

To claim PIP, you will need to fill in a form about how your condition affects you. You may then be invited to have an assessment with a health professional.

Your claim will be assessed using a points system. You can score points if you have difficulty carrying out certain activities, such as using the toilet or walking. You cannot score points just for having Crohn's or Colitis or any other condition - you need to show how your Crohn's or Colitis affects your life based on the listed activities. Whether you qualify for PIP, and how much you get, depends on the total number of points you score for all of the listed activities.

How much could I get?

Whether you qualify for the daily living component, the mobility component or both depends on how much help you need because of how your condition affects you.

Each component has two rates – a lower (standard) rate and a higher (enhanced) rate. The Department for Work and Pensions (DWP) will decide whether you are entitled to PIP, and which rate you will get, depending on how your condition affects your ability to carry out the listed daily living activities and mobility activities.

Your rate will be reviewed regularly to make sure you are receiving the right amount of help.

Check the GOV.UK website to check the current rates for PIP.

PIP is usually paid every four weeks into your bank, building society or credit union account. It is tax-free and you can get it whether or not you are working. You can claim PIP even if you have a high income or a high level of savings. It is paid on top of any other benefits you may be receiving, and it may mean you qualify for a top-up on some of your other benefits.

Who provides PIP?

The Department for Work and Pensions (DWP) is responsible for PIP in England and Wales.

What happens if I am claiming Disability Living Allowance?

Disability Living Allowance (DLA) is being replaced by PIP, except if you are aged under 16 years old. Read more on the GOV.UK website.

You will need to show that your Crohn's or Colitis affects your daily life.

To claim PIP, you must:

• Have had problems with daily living activities and/or mobility difficulties for at least three months and
• expect these problems to last for at least another nine months (unless you are terminally ill)

You can apply for PIP sooner than this, but you will not receive any payment until after the three-month qualifying period. 

You may qualify for the daily living component if you have difficulty with any of the following activities:

• Preparing food
• Eating and drinking
• Washing or bathing
• Using the toilet
• Dressing and undressing
• Reading and communicating
• Managing your medicines or treatments
• Making decisions about money
• Socialising and being around other people

You may qualify for the mobility component if you have difficulty with any of the following activities:

• Planning a route and following it
• Moving around
• Leaving your home

If you have any medical condition that means you might have 12 months or less to live, your claim will be dealt with more quickly. You will automatically qualify for the enhanced rate of the daily living component of PIP. But you will still need to show that you have problems moving around or going out, to qualify for the mobility component of PIP.

You will be able to claim PIP straight away - you do not have to wait for the three-month qualifying period. You or someone else can call the PIP claim line to start your claim. You can get an SR1 medical report from your doctor.

The GOV.UK website has information on how to claim if you might have 12 months or less to live.

Q1b. Tablets or other medicines

This question asks for details about any medicine you are taking, these might be prescribed to treat your Crohn’s or Colitis, or other medicines such as painkillers. Write down how often you take each medicine, and the dosage if you know it.

Include information on any side effects you experience, especially if they affect your ability to do daily living or mobility activities.

If you have tried a medicine that did not work, you may want to explain this on the form. You can also say whether there are any standard Crohn's or Colitis medicines that you cannot take, for example, due to the side effects or because you cannot take them with your other medicines.

If you are taking a lot of medicines, you may find it easier to attach your prescription list to the form.

Q1c. Treatments

This question asks for details of treatments you have had, are currently having or have planned for the future.

Include details of treatments or therapies such as enemas, stoma checks, colonoscopies or regular appointments with a therapist, nutritionist or psychologist. Remember to describe any side effects and how they affect you.

The form lists 10 daily living activities and two mobility activities. For each activity, there are questions with tick boxes, followed by a larger box where you can give more information.

PIP is assessed based on whether you are able to complete the activities reliably. Ask yourself if you can complete each activity:

• Safely– is there a risk that you could injure yourself or make your Crohn's or Colitis worse?
• To an acceptable standard – does your Crohn's or Colitis make it hard for you to do it properly?
• Repeatedly– can you repeat the activity as many times as you need, or do you need to rest for a long time in between?
• In a timely manner– does it take you much longer than someone who does not have Crohn's or Colitis?

You should add as much detail as you can to each question. It is not enough to say you just find an activity hard, you should explain why you find it hard and include any examples or evidence.

Descriptors and points

Each activity has a list of descriptors. These are statements that describe increasing levels of difficulty in carrying out the activity. Each descriptor has a score attached to it. Make sure you consider the descriptors and points when thinking about each question.

The PIP form does not tell you what the descriptors are for each activity, but we list them on the following pages.

For each activity, the person who assesses your ability (the assessor) will choose the one descriptor that fits you best based on what you have said on your form and at your assessment. You will score the points attached to that descriptor. If more than one descriptor applies to you, the assessor will choose the one with the most points.

Scoring

Your scores from the 10 daily living activities are added together to give a total score for daily living. Your scores from the two mobility activities are added together to give a total score for mobility.

These are the number of points you must score to qualify for each of the PIP components:

Lower weekly (standard) rate
Daily living – 8 to 11 points
Mobility – 8 to 11 points

Higher weekly (enhanced) rate
Daily living – 12 or more points
Mobility - 12 or more points

Aids and appliances
The assessment will take into account any aids or appliances you normally use.

Aids are devices that help you perform a function. For example, a walking stick to help you walk or a bath seat to help you wash.

Appliances are devices that provide or replace a missing function. For example, a stoma bag.

When you fill in the PIP form, say whether you need help from another person when you use an aid or appliance. You might need someone to help you use it, to remind you to use it or to help you clean the aid or appliance. You can score more points if you need help from another person.

Include details of any aids or appliances that people with Crohn's or Colitis commonly use, but that would not be helpful for you. Explain why you can’t use them and whether this makes your daily life more difficult. This will help the assessor understand how Crohn's or Colitis affects you personally.

Tips for completing questions 3 to 15

• Give as much extra information as you can.The person assessing your claim may have very little knowledge of Crohn's or Colitis and will not know your personal circumstances or history.
• You can repeat the same information.For example, if bending causes you pain, this may affect more than one activity, such as bathing, using the toilet and getting dressed.
• Do not be embarrassed about describing the problems you are having.You may need to describe the problems you have using the toilet, or explain symptoms such as explosive, runny poo (diarrhoea). Many people with Crohn's or Colitis have other problems or conditions, such as depression or incontinence. Describing fully how these affect you will help you to get the right amount of PIP.
• Give examples to help explain the problems you have.Instead of saying ‘I am at risk of falling when getting out of the bath,’ you could say ‘Two weeks ago I lost my balance, slipped and fell when getting out of the bath. I hit my hand on the radiator and cut it. I lay there for a few minutes before I could try to stand up. It took me a few attempts before I could get up, because my arms and legs felt weak.’
• Do not underplay the problems you have.Many people cope with their Crohn's or Colitis by keeping positive and accepting that there are some things they cannot do. When you are filling in the PIP form, you will need to focus on the things you cannot do or that you find difficult or painful. Make sure you do not leave out any details of how your Crohn's or Colitis affects your life.
• Be clear about how bad your Crohn's or Colitis is.If your Crohn's or Colitis has become worse, or if a doctor has told you it is likely to get worse, you should make this clear on the form and attach medical evidence if you can.
• It is okay to tick the box to say you need helpwith an activity if you find it difficult but do not actually receive any help. You do not need to have a carer to qualify for PIP. Explain what kind of help you need, for example, verbal prompting, physical help or supervision.
• Think about the descriptors for each activity.Remember that the assessor will choose the descriptor that applied to you for more than half the days over the last three months and is likely to apply to you over the next nine months. Try to give a detailed picture of how often your Crohn's or Colitis affects your daily life. Explain how often you need help doing the listed activities – for example “3 weeks out of 4 in a month” or “6 days out of 7 in the week”.

Example: “On 10 days out of 12 I get diarrhoea after eating. This makes it hard for me to make myself eat. My family check that I eat most meals, but if they’re not home then I don’t bother.’

• Explain how fatigue (tiredness) affects you.Many people with Crohn's or Colitis have fatigue. If it affects your daily life, explain on the form whether it means you avoid certain activities or whether you ever have to stop an activity after you have started. Do you need to take naps or rests during the day? Could some activities, such as cooking, be dangerous when you are very tired? Do you have to lean on furniture when moving around the house or the wall of the shower because of your fatigue?
• Think about the different steps involved in each activity.Even if you can do most of the activity, there may be an important part of it that you find difficult. For example, maybe you can put on most of your clothes without too much difficulty, but you struggle to put on socks and shoes because it is painful for you to bend over to reach your feet.

Q3. Preparing food

This question asks about your ability to prepare and cook a simple meal.
‘A simple meal’ means a cooked one-course meal for one person, using fresh ingredients. ‘Cooking’ means ‘heating food at or above waist height’, so the assessor will not take into account any difficulty you may have with bending to put things into the oven or to get things out of low cupboards.

Preparing food descriptors and points
a. Can prepare and cook a simple meal unaided (0 points)
b. Needs to use an aid or appliance to either prepare or cook a simple meal (2 points)
c. Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave (2 points)
d. Needs prompting to be able to either prepare or cook a simple meal (2 points)
e. Needs supervision or assistance to either prepare or cook a simple meal (4 points)
f. Cannot prepare and cook food (8 points)

Things you could write about:

• If another person helps you to cook, because of your Crohn's or Colitis or another medical problem, explain what they do to help you.
• If you skip meals, explain why. For example, feeling sick, pain, tiredness.
• Do you eat ‘ready meals’ or snacks because you find it difficult to prepare a meal or because you lack motivation to do so?
• Describe any aids or appliances you use during cooking. They do not have to be medical appliances. They could be kitchen appliances that make it easier for you to prepare meals. Give examples of what these appliances are, such as lightweight saucepans, electric tin openers or needing a stool or chair while cooking.
• Do you find it hard to watch over a meal while it is cooking? For example, this may happen if you urgently need to use the toilet several times and for long periods of time. This could make it difficult for you to make sure the food is cooked properly and not burnt. It could be dangerous to leave food cooking unattended.
• Do you have to follow a special diet or avoid certain foods? You will not score points just for this, but you may get points if it means you find it harder to prepare a meal. It may mean that preparing meals takes longer or involves extra tasks, such as mashing food or chopping it more finely. Or you may need prompting, help or supervision from another person to help you follow the right diet.

Example:
‘When my Crohn's or Colitis flares up (two months out of the last three months), I need to go to the toilet urgently two or three times while I am cooking. This makes it hard to cook safely. I have burnt my dinner twice because I have been in the toilet and have not been able to turn the oven off in time.’ 

Q4. Eating and drinking

Eating and drinking descriptors and points

1. a) Can take nutrition unaided (0 points)
2. b) Needs either (i) to use an aid or appliance to take nutrition; (ii) supervision to be able to take nutrition; or (iii) assistance to cut up food (2 points)
3. c) Needs a therapeutic source to take nutrition (2 points)
4. d) Needs prompting to take nutrition (4 points)
5. e) Needs assistance to be able to manage a therapeutic source to take nutrition (6 points)
6. f) Cannot convey food and drink to their mouth and needs another person to do so (10 points)

Things you could write about:

• Do you find it difficult to make yourself eat because you know it is likely to make you feel sick or cause loose and runny poo (diarrhoea)?
• The symptoms of Crohn's or Colitis are likely to be affected by what you eat – you could explain the importance of eating regular, healthy meals and snacks to manage your condition.
• Do you find it hard to keep to a healthy weight? If your Crohn's or Colitis has caused you to lose weight, you may want to give details of how much weight you have lost. You will not score points for being underweight, but it gives the assessor an idea of the problems you are having with getting enough nutrition.
• Do you need liquid food, taken through a tube into the stomach or small bowel or TPN? Two of the descriptors – c and e, above - describe these as ‘therapeutic sources.’
• Do you have mouth ulcers? Do they make eating painful or uncomfortable?
• Do you find it difficult to use cutlery? For example, you may have joint pain that makes this difficult.

Example:
‘When I eat, I need to go to the toilet straight afterwards to poo (open my bowels). Because of this, I cannot eat if I need to leave the house. My partner has to push me to eat and, if she is not there, I skip meals because eating makes me feel sick and gives me diarrhoea.’

Q5. Managing your treatments

Managing treatments descriptors and points

1. Either (i) does not receive medication, therapy or need to monitor a health condition; or (ii) can manage medication, therapy or monitor a health condition unaided (0 points)
2. Needs any one or more of the following – (i) to use an aid or appliance to be able to manage medication; (ii) supervision, prompting or assistance to be able to manage medication; (iii) supervision, prompting or assistance to be able to monitor a health condition (1 point)
3. Needs supervision, prompting or assistance to manage therapy that takes no more than 3.5 hours a week (2 points)
4. Needs supervision, prompting or assistance to manage therapy that takes between 3.5 and 7 hours a week (4 points)
5. Needs supervision, prompting or assistance to manage therapy that takes between 7 and 14 hours a week (6 points)
6. Needs supervision, prompting or assistance to manage therapy that takes more than 14 hours a week (8 points)

Things you could write about:

• Do you need help from another person with things like taking medicine to empty your bowels (enema), applying cream or changing dressings?
• Do you need help from another person with monitoring the effect of your Crohn's or Colitis and its treatment? For example, you may need help with checking the condition of the area around your bottom (anus).
• Do you need someone to remind you to take your medicines? For example, if you have depression, you may forget to take medicines on time.
• Do the side effects of your Crohn's or Colitis or other health problems make it difficult for you to take your medicines?
• Do you need to use an aid or appliance? Examples include an alert on your phone or an alarm to remind you when to take your medicines. If you have a lot of different medicines, do you need a dosette box to help you organise your tablets?

Example:
‘I take several medicines at different times of the day (my prescription list is attached to this application). I find it hard to remember what medicine to take at what time. I use a dosette box to organise my medicines and an alarm on my mobile phone to tell me when to take them.’

Q6. Washing and bathing

Washing and bathing descriptors and points

1. Can wash and bathe unaided (0 points)
2. Needs to use an aid or appliance to be able to wash or bathe (2 points)
3. Needs supervision or prompting to be able to wash or bathe (2 points)
4. Needs assistance to be able to wash either their hair or body below the waist (2 points)
5. Needs assistance to be able to get in or out of a bath or shower (3 points)
6. Needs assistance to be able to wash their body between the shoulders and waist (4 points)
7. Cannot wash and bathe at all and needs another person to wash their entire body (8 points)

Things you could write about:

• Do you need help from another person? Explain what they do to help you, for example, helping you in and out of the bath.
• Do you need any equipment, such as handrails, a long-handled brush or a shower seat?
• Do you need to use a bidet to clean yourself after using the toilet?
• Do you need to wash or shower more often because of leakage, incontinence, infections or fistulas?
• Do you find it difficult or painful to reach any areas of your body when you are washing?
• Do you sometimes feel too tired or depressed to wash, bathe or shower?
• Do you feel tired or drained after washing or bathing?
• Can you wash or bathe reliably and safely without pain? Have you had any falls, or nearly fallen, while having a bath or shower?
• Do you only take a bath or shower if there is someone close by in case you fall?

Example:
‘I find it hard to wash by myself because it is so tiring. If my husband is not there to help me, I usually do not feel like washing and do not bother to have a shower or bath. Last week, I had a shower and I slipped when I was getting out. Luckily my husband was there and he stopped me from falling.’

Q7. Using the toilet and managing incontinence

Using a toilet means getting on and off a normal (not adapted) toilet and cleaning yourself afterwards. Managing incontinence means coping with not being able to control your bladder or bowel, and cleaning yourself afterwards. This may include using an aid, such as incontinence pads, a wiper, a stoma bag or a catheter.

The assessment does not look at needing to get from another room to the toilet, finding a toilet in a public place or cleaning the toilet or surrounding area.

Using the toilet and managing incontinence descriptors and points

1. Can manage toilet needs or incontinence unaided (0 points)
2. Needs to use an aid or appliance to be able to manage toilet needs or incontinence (2 points)
3. Needs supervision or prompting to manage toilet needs (2 points)
4. Needs assistance to be able to manage toilet needs (4 points)
5. Needs assistance to be able to manage incontinence of either bladder or bowel (6 points)
6. Needs assistance to be able to manage incontinence of both bladder and bowel (8 points)

Things you could write about:

• Do you have difficulty getting on or off the toilet? Do you feel weak or unsteady when you get up from the toilet?
• How long do you spend sitting on the toilet each time you go?
• Do you use any aids or appliances, such as a commode, raised toilet seat, bottom wiper, bed or seat pad or waterproof sheet? If you use incontinence pads, how often do you need to change them? Do you need any help from another person, for example with emptying a commode?
• If you use a stoma bag, explain how you use it, how often you need to empty it and how you clean the stoma site. Describe any problems with bags leaking or bursting. If you need help from another person, explain what they do to help you.
• Do you find it difficult to clean yourself after using the toilet or following an episode of incontinence? Does it take you a long time to clean yourself properly? Do you need to shower or bathe? Do you need help with changing bed sheets or washing clothes?
• Do you face extra costs for any aids or appliances that help you use the toilet or manage any episodes of incontinence?
• Is there a risk of slipping or falling when getting on or off the toilet, sickness, or infection due to an inability to maintain personal hygiene).

 One of the solutions that the assessor may suggest as reducing the need for assistance is the use of a commode. That is not always a practical suggestion, for reasons of space, privacy and the difficulty in emptying and cleaning it so you may find it helpful to have some reasons to explain why it wouldn’t be suitable for you.   

Example of a supporting statement:
‘I cannot control when I poo (empty my bowels). The need is both urgent and unpredictable. A commode is not practical option. I wear incontinence pads and use waterproof sheets on my bed. My Crohn's or Colitis makes me feel very tired, so I need help to change the bed sheets during the night and have someone nearby for safety if I need to shower or bathe.’

Q8. Dressing and undressing

Dressing and undressing descriptors and points

1. Can dress and undress unaided (0 points)
2. Needs to use an aid or appliance to dress or undress (2 points)
3. Needs either (i) prompting to dress, undress or determine appropriate circumstances for remaining clothed or (ii) prompting or assistance to select appropriate clothing (2 points)
4. Needs assistance to be able to dress or undress their lower body (2 points)
5. Needs assistance to be able to dress or undress their upper body (4 points)
6. Cannot dress or undress at all (8 points)

Things you could write about:

• Do you find it difficult or painful to bend down? Does this make it hard for you to put on or take off socks, shoes or clothes on your lower body?
• Do you need to wear clothes that are easy to undo if you need the toilet urgently, for example, clothes with elasticated waists or Velcro fastenings?
• Do you have joint pain that makes it hard to use zips or buttons on clothes?
• Do you need to use any aids, such as elasticated shoelaces or a shoe horn? Do you need to wear clothes or support garments that give extra support to a stoma or hernia?
• If you sometimes need to change your underwear or clothes because of incontinence or leakage, say how often this happens.
• Do you lack the motivation or energy to get dressed or change your clothes? This may be because you are depressed or tired, or because dressing is painful or difficult. Do you sometimes stay in night clothes during the day or go to bed in the clothes you have worn all day?
• If another person helps you to get dressed, explain how they help you.

Example:
‘I find it painful to bend down, so I cannot put my socks or shoes on myself. My partner helps me get dressed every day. If she is not there, I cannot get dressed to go outside by myself, so I have to stay at home.’

Q9. Talking, listening and understanding

This question asks about how well you can speak, hear and understand your native language.
If your Crohn's or Colitis makes you feel very tired, then you may have problems understanding what people are saying. But for most people with Crohn's or Colitis, communication is unlikely to be a problem, unless they have other health problems. For example, if you are hard of hearing or have a learning disability, you may score points for this activity.
If anxiety or depression makes it hard for you to speak to people, you can explain this later in question 11.

Talking, listening and understanding descriptors and points

1. Can express and understand verbal information unaided (0 points)
2. Needs to use an aid or appliance to be able to speak or hear (2 points)
3. Needs communication support to be able to express or understand complex verbal information (4 points)
4. Needs communication support to be able to express or understand basic verbal information (8 points)
5. Cannot express or understand verbal information at all even with communication support (12 points)

Q10. Reading

This question asks about how well you can read and understand signs, symbols and words.

This is unlikely to be relevant for you if your only health condition is Crohn's or Colitis. If you have another health condition that affects your ability to see or understand written information, explain what difficulties you have.

Reading descriptors and points

1. Can read and understand basic and complex written information either unaided or using spectacles or contact lenses (0 points)
2. Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information (2 points)
3. Needs prompting to be able to read or understand complex written information (2 points)
4. Needs prompting to be able to read or understand basic written information (4 points)
5. Cannot read, or understand signs, symbols or words at all (8 points)

Q11. Mixing with other people

This question asks about how well you engage with people face-to-face. This includes people you know well and people you do not know.

If mixing with other people causes you extreme worry or stress, you will need to show that this is linked to a mental health condition, such as anxiety or depression. Sometimes, the stress of living with Crohn's or Colitis can affect your mental health. If you need prompting or support, this can come from a family member or friend. It does not have to be professional support. You will need to show that the family member or friend has experience of supporting you – state how long they have been helping you and how often. 

Mixing with other people descriptors and points

1. Can engage with other people unaided (0 points)
2. Needs prompting to be able to engage with other people (2 points)
3. Needs social support to be able to engage with other people (4 points)
4. Cannot engage with other people due to such engagement causing either (i) overwhelming psychological distress to the claimant or (ii) the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person (8 points)

Things you can write about:

• Do you have a mental health condition that makes it hard for you to mix with other people?
• Do you have panic attacks?
• Have you avoided mixing with other people because of your Crohn's or Colitis? Explain the reasons for this. For example, you may be worried about needing the toilet, incontinence or passing wind.
• Do you feel isolated? For example, do you avoid going out in case you cannot find a toilet easily?
• When you mix with other people, do you need to have someone with you? How does this person reassure or support you?
• Do you avoid social activities or meeting new people? Have you given up any activities that you enjoyed in the past?
• Do you find it very tiring to mix with other people? Do you need to rest afterwards?
• Do you sometimes become irritable or lose your temper around other people?

Example:
‘I used to go to a weekly exercise class, but I have stopped going because I am worried that my stoma will leak or make loud noises. I worry a lot about it and so I avoid being around other people and now spend a lot of time by myself at home. My GP has diagnosed me with anxiety.’

Q12. Managing money

This question asks about how well you understand money and prices, and whether you can work out a household budget and pay bills. It does not cover your ability to walk around shops, get cash out of a purse or carry shopping. This question may not be relevant to you if your only health condition is Crohn's or Colitis, unless you have severe tiredness that makes it hard for you to manage money or plan what you want to buy. If you have another health condition that affects your ability to understand money and prices, explain the difficulties you have. 

Managing money descriptors and points

1. Can manage complex budgeting decisions unaided (0 points)
2. Needs prompting or assistance to be able to make complex budgeting decisions (2 points)
3. Needs prompting or assistance to be able to make simple budgeting decisions (4 points)
4. Cannot make any budgeting decisions at all (6 points)

Mobility activities and descriptors

To qualify for the standard rate of PIP mobility component, you need to score at least 8 points in total from the two mobility activities. They are ‘planning and following  a journey’ and ‘moving around’. To get the enhanced rate, you need to score at least 12 points. If your difficulties are mainly physical, you may score zero for ‘planning and following a journey’.

Q13. Planning and following a journey

This question is about planning and following journeys. It could be relevant to you if you have a learning disability or a condition such as anxiety, depression, agoraphobia or sight problems.

This activity includes journeys you make using public transport for an unfamiliar journey. It does not take into account any physical difficulties involved in using public transport (such as lack of toilets or difficulty getting on and off a bus).

This question does not look at your physical ability to get around, which is covered in question 14.

Planning and following a journey descriptors and points

1. Can plan and follow the route of a journey unaided (0 points)
2. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant (4 points)
3. Cannot plan the route of a journey (8 points)
4. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid (10 points)
5. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant (10 points)
6. Cannot follow the route of a familiar journey without another person, assistance dog or orientation aid (12 points)

Things you could write about:

• Does going out make you feel anxious, panicky or distressed? You are more likely to score points if you can show that this is linked to a diagnosed mental health condition. Provide evidence where you can, for example, by attaching a letter from a doctor or counsellor, or a prescription list showing the medicines you have been given for a mental health condition.
• Do you need someone to talk you into going out?
• Is it helpful to have someone with you when you go out, to help you find your way around or to calm and reassure you?
• If you have panic attacks, describe how you feel when they happen. Do you feel short of breath or dizzy?
• Have you ever had to stop your journey and go home because you were too upset to continue?
• Do you find it hard to concentrate on following an unfamiliar route? For example, due to feeling very tired or anxious. You may be distracted because you are worrying about needing a toilet.
• Do you find it difficult to understand timetables or to plan a route using public transport?

Example:
‘I cannot go on any journeys by myself because I am worried about the severe consequences of not being able to get to a toilet quickly. I have to take someone I trust with me, otherwise I get very worried and upset. My friend helps me work out where the nearest toilets are along the route and helps to calm me down when I panic.’

Q14. Moving around

This question asks about your physical ability to stand and move around without severe discomfort, such as breathlessness, pain or fatigue. The assessment looks at your ability to move around outdoors on normal outdoor surfaces - this includes pavements and kerbs but not flights of stairs or rough ground.

Question 14a is important as your answer will help the assessor decide whether you qualify for the PIP mobility component. You need to tick a box to say how far you can walk. Your choices are:

• less than 20 metres
• between 20 and 50 metres
• between 50 and 200 metres
• 200 metres or more
• it varies.

To give you an idea of how far these distances are, a bus is about 10 metres long and a full-size football pitch is usually about 100 metres long. It is important to give an honest picture and not overstate the effects of your Crohn's or Colitis. But this question is not just asking whether you can physically walk each distance if you absolutely have to. It is asking whether you can walk that distance reliably, repeatedly, safely and in a reasonable time.

Think about whether you can walk that distance:

• In a reasonable manner – or would you be unsteady, shuffling, limping or bent over?
• Without pain or discomfort – either while walking or afterwards
• In a reasonable time - would you be much slower than a person with no disability or health condition?
• Without needing to pause or stop
• Without falling
• Without making your Crohn's or Colitis worse in any way
• Without feeling so tired that you cannot repeat it or do other activities for some time afterwards.
• A second time after a short break - or would you need to rest and be unable to walk that far again for a long time?
• At almost any time, or only at certain times of day or on ‘good days’

Do not say that you can walk a certain distance unless you are sure that you can walk it safely, in an acceptable manner, repeatedly and in a reasonable time.

Moving around descriptors and points

1. Can stand and then move more than 200 metres, either aided or unaided (0 points)
2. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided (4 points)
3. Can stand and then move unaided more than 20 metres but no more than 50 metres (8 points)
4. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres (10 points)
5. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided (12 points)
6. Cannot, either aided or unaided, (i) stand or (ii) move more than 1 metre (12 points)

Things you could write about:

• Do you have any pain when you walk? Do you have this pain as soon as you start to walk? If not, how far can you walk before the pain starts? Describe where the pain is and how it feels – for example, cramping, shooting, stinging, burning or aching.
• Does walking cause you to feel sick, dizzy or breathless? How far can you walk before this starts?
• Give details of any aids or appliances you use, such as a walking stick or wheelchair, even if you only use it sometimes. If you use a wheelchair, do you need someone to push it for you?
• Have you tried using a walking aid but found it unhelpful?
• Do you need to take someone’s arm or lean on them when you walk?
• If you need to stop and rest, how long do you stop for and do you need to sit down or hold on to something?
• Does walking increase your risk of leaking or incontinence?
• Are there times of the day when you cannot go outdoors because you need to stay close to a toilet?
• If you walk slowly, you could give an example like, ‘I take twice as long as my partner to walk to the corner shop, which is 150 metres away’.
• Give examples of how this affects your daily life. Does your GP visit you at home because it is a struggle to get to the surgery? Do you have your food shopping delivered because you find it too difficult to walk to, or around, the shop? If you do shop, do you have to hold on to a trolley and do you only use shops that have accessible customer toilets?
• This activity looks at your ability to walk outdoors. But if you have difficulty moving around indoors, particularly in your own home, this could help to show that you are likely to have difficulty walking outdoors as well.

Example:
‘I can walk to the corner shop, which is 150 metres away. But it makes me feel very tired and I need to sit down and rest before I can walk home. This makes it hard for me to get around and to do my shopping. My neighbour gets my food shopping for me and gives me a lift to the GP surgery or anywhere else I need to go.’

Q15. Additional information

This is where you can give any relevant information that you have not already mentioned.

Things you could write about:

• How your Crohn's or Colitis has affected your life – for example, if you have had to give up work, if you are housebound or if you sometimes feel like harming yourself.
• Have you stopped or reduced seeing your friends and family or going to leisure activities such as cinema, sporting events, the library or bingo because of the risk of incontinence?
• If you have a paid or unpaid carer, you could say how much time they spend looking after you.
• You could give more information about how your Crohn's or Colitis varies day to day.
• If your Crohn's or Colitis is getting worse, you could describe how it is causing you more difficulty.

The final section of the form asks about any help you may need if you are invited to an assessment with a health professional. Most people have telephone or video assessments, rather than face-to-face.

You can ask for a sign-language interpreter or language interpreter if you need one.

You can also note down any help you would need if you have to go for a for a face-to-face assessment. For example, you may need accessible toilets or you may have difficulty using stairs. Your assessment should be held in a room that is either on the ground floor or that you can access by a lift. If you cannot use the stairs in an emergency, the room should be on the ground floor.

Keep a copy of the form

It is important to keep a copy of your completed PIP form and any supporting evidence that you send. There are several reasons for this:

• In case your form gets lost after you send it – make sure your copy shows the barcode.
• There can be a delay of several weeks or even months between you sending your form and going to your assessment. Keeping a copy of the form means you can remind yourself of what you wrote.
• If you are not happy with the outcome of your claim, you may want a copy of the form to help you challenge the decision.
• If you are awarded PIP, this will probably be for a fixed amount of time. When you come to renew your award, you may find it helpful to look at your original form.

Attach as much evidence as you can

It is very important to attach photocopies of evidence to support your claim. Remember to keep a copy as well. Here are some examples of the type of evidence that could be useful.

• Reports or letters from your GP, hospital doctor, specialist nurse or other medical professional.
• Reports or letters from other people who help you, such as a social worker, support worker or counsellor.
• Information about extra support that you get at work or college because of your Crohn's or Colitis.
• A letter or statement from someone who gives you support, such as a friend, family member or neighbour.
• A diary kept by you or your carer – see further down for more information about keeping a diary.

More recent evidence, from the last year or so, may be more helpful than older evidence.

Send any evidence that you already have. Do not wait for extra evidence if it means you will miss the deadline for returning your form. If you are waiting for new evidence, you can mention this in question 15 and send it later. 

Check that the evidence you are sending is helpful to your claim and is likely to help you score points in the PIP assessment. You may choose not to include something that is misleading, for example, if a report states you can do an activity but does not mention that it causes you pain. You do not have to include evidence with your claim if you do not have it. Make sure you put plenty of detail on the form and explain at the assessment about how your disability affects your daily living and mobility.

Sending evidence after you have completed your claim form

You may get additional evidence or information after you have already sent in your PIP form. The Citizens Advice website has information and a letter template to use to send evidence after your PIP claim form.

Keeping a diary

It can be very useful to keep a diary to record your difficulties with daily living and mobility. You may want to keep a diary for two to three weeks, to show how your Crohn's or Colitis varies over time.

The diary can help to show the impact of your Crohn's or Colitis on your daily life, how often you have difficulties and how long it takes you to do things. Your diary can be in note form and can include things like:

• What you do during the day
• The symptoms you have and how they affect you
• How other people help you – whether they give you physical help, prompt you to do things or stay close by in case you need help
• What you do for yourself but find difficult because of your disability
• How long it takes you to do things like taking a shower or getting dressed
• What you do not do because there is no one to help, because it would be too difficult or because you are in too much pain or too tired
• Any difficult situations, such as episodes of incontinence, falls or injuries, or being unable to complete an activity you have started
• How often you need to use the toilet
• Your moods and whether you have a mental health condition

If you keep a diary for a few days or weeks before completing the form, you may find that it helps you to notice or remember difficulties that would have slipped your mind otherwise.

A diary may also be very useful if you have to challenge the decision you are given. If you need to attend a tribunal, it will be valuable evidence of the difficulties you faced on a day-to-day basis at the time of your application.

You can see a sample diary entry in Appendix 1 at the end of this guide.

What happens after I return the form?

The DWP will consider your claim. They will look at your PIP form and any other evidence you have sent and decide whether to invite you to an assessment with a health professional. It may take a long time to hear from the DWP. You can call the PIP enquiry line to check they have got your form.

Recording and taking notes

You, or someone with you, can take notes of what was said during the consultation for your personal use. If you feel that the consultation was rushed or you did not get a chance to explain your difficulties fully, you may want to make notes about what happened. This could help you challenge the decision if you are not happy with the result of your claim.

You can make an audio recording of the assessment if it is over the phone or face-to-face. There are some rules that you will need to follow.

• You will need to tell the organisation (IAS or Capita) in advance that you want to record the assessment.
• They will ask you to sign or verbally consent to an agreement, which states what you can and cannot do with the recording.
• Video recordings of assessments are not allowed, to ensure privacy and safety of you and the assessor.

Face-to-face assessments

Face-to-face assessments are carried out at a range of locations, including specialist assessment centres, local healthcare centres or in your own home. When you fill in the PIP form, you can ask for the consultation to be in your home if you would find it too difficult to travel to the assessment centre, which could be up to 90 minutes away by public transport. If your assessment provider is IAS, you will probably need evidence from your doctor to support your request for a home visit. Capita aims to offer home visits to more than half the people who ask for them. 

You can claim travel expenses for getting to the assessment if it is not at your home. The DWP expect people to travel by private car or public transport where possible. If you need to travel by taxi, telephone the assessment provider (IAS or Capita) in advance to let them know that you need to do this and will be claiming expenses. They may ask you to provide a letter from a medical professional explaining why your condition means that you cannot travel by public transport. If you travel by car or public transport, you can ask to claim your expenses on the day of the assessment.

If free parking is not available at the assessment centre, you can claim for parking costs.

Keep your tickets or receipts for public transport, parking or taxi fares, and be ready to provide your bank or building society details so your travel expenses can be paid into your account.

The assessor will make a note of how well you are able to walk into the assessment centre or room. They may ask how you travelled to the assessment centre, to find out how well you can walk and plan a journey. It is important to mention any difficulties that you had on the journey. For example, if you walked from your home to the bus stop, mention if the walk was slow or painful. Or you may have needed a lift and been dropped off right outside the centre. You may have struggled with the walk from the car park or with any stairs in the assessment centre.

On the day of your assessment, you may need to get up extra early to eat before leaving the house. Or you may need to take anti-diarrhoeal medicine if your doctor or Crohn's or Colitis team has recommended it. It is worth mentioning if you have had to do this.

Do not feel that you have to dress more smartly than you normally would, or ‘put on a brave face’. If another person has helped you to dress, let the health professional know that you have had help.

You can take written evidence to the face-to-face assessment. For example, you may have new evidence, or your medical team may not have sent evidence in time for you to include with your form. The assessor will take a copy of your evidence and take it into account when completing their report. You should also send a copy of your medical evidence to the DWP.

Will I have a physical examination?

During a face-to face assessment, the health professional may carry out a physical examination or do non-invasive tests, such as testing your blood pressure. They may ask you to perform certain tasks or movements, such as raising a leg or bending over. They should not force you to do anything that would cause you pain, embarrassment or discomfort. They will not ask you to do a formal walking test, but they are likely to watch how you walk from the waiting room to the consultation room and how you move around during the assessment. They are not allowed to ask you to remove your underwear and they cannot carry out intimate examinations such as breast, rectal or genital examinations.

Throughout the assessment the health professional will also look at how you cope with activities such as removing your coat, handling your bag and holding a conversation. If you are having an assessment at your home, they will notice the home environment and any aids and adaptations. If they are in your home, they should not look into rooms that they have not been invited to enter. 

You can get PIP at the same time as all other benefits, except Armed Forces Independence Payment. It may increase the amount of benefit that you, your family or your carer can get. If you have previously been told that your income is too high for you to qualify for means-tested benefits, an award of PIP may change this. We recommend seeking advice to check whether there is anything else you can claim. Online benefits checkers are available on the Turn2us and Citizens Advice websites.

If you (or your partner or a dependant young person included in your benefit claim) are awarded PIP, you should tell the offices that pay your other benefits. If you stop getting PIP, or if the rate you get changes, you will need to tell the offices that pay your other benefits as well.

You could also qualify for:

• Extra support with council tax and discounted travel on local buses - ask your local council
• A blue badge for parking
• Exemption from vehicle excise duty (road tax) if you receive the enhanced rate of PIP mobility component or a 50 per cent discount on road tax if you receive the standard rate mobility component

If you are awarded the enhanced rate of PIP mobility component for 12 months or more, you can use it to pay for a car or powered wheelchair under the Motability scheme.

For more information, phone Motability on 0300 456 4566 or go to motability.co.uk

Citizens Advice has information on getting extra money and help, including information on the Motability scheme.

Making a claim

Department for Work and Pensions (DWP)

PIP new claims

Telephone: 0800 917 2222
Textphone: 0800 917 7777
Relay UK (if you cannot hear or speak on the phone): 18001 then 0800 917 2222
British Sign Language (BSL) video relay service if you’re on a computer - find out how to use the service on mobile or tablet
Calling from abroad: +44 191 218 7766
Monday to Friday, 8am to 5pm

Your assessment

Capita:
England 0808 1788 114
Wales 0808 1788 115

Independent Assessment Services (IAS): 

North of England 0800 188 4880
Southern England 0800 188 488

Getting support and advice

Advice Now

Citizens Advice

Motability

Turn2us

Your MP

You can find contact details for your local MP from your local library or online.

Saturday Morning

We follow strict processes to make sure our information is based on up-to-date evidence and easy to understand.

Please email us at evidence@crohnsandcolitis.org.uk if:

• You have any comments or suggestions for improvements
• You would like more information about the sources of evidence we use
• You would like details of any conflicts of interest

You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE, or contact us through our Helpline: 0300 222 5700