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Cystic Fibrosis Trust

A guide to the assessment criteria for PIP

The aim of this guide is to help you understand how somebody with cystic fibrosis will need to think and talk about how their disability affects them on a day-to-day basis, in order to maximise their opportunity to get a comprehensive and fair assessment.

Please ensure you have read the introduction to the claims process, which contains vital information on understanding the assessment criteria, before continuing.

It is easy to become accustomed to the adjustments you have made to cope with your health condition, and it may take careful consideration to realise what gradual adjustments you have had to make over time.

Look at each criterion carefully and think how each of these examples applies to you, and what other similar instances are in your own life. These are the points that need conveying both in your personal statement in your claimant questionnaire and to the healthcare professional undertaking your assessment.

Activity 1 – Preparing food

Question 3 on the PIP2 claim form.

Eating the right food and taking the right nutrition* are a key part of living with cystic fibrosis. Pain, fatigue and tiredness, feeling dizzy or fuzzy-headed can all make preparing food challenging and, in some cases, impossible. Many people with cystic fibrosis need support and assistance to prepare their meals.

You may struggle to go through the process of preparing a meal from start to finish without experiencing one or more of the effects listed above.

Think about the process in detail – opening packaging, peeling, chopping and serving your food. Do you need to use a microwave to avoid fatigue, breathlessness or pain when using a conventional cooker? Does it take you more than twice the time it might take a healthy person to cook a simple meal? Make sure that you convey the range of your experiences; on some days you may cope and on others you may struggle.

*Nutrition is covered separately in Activity 2

Activity 2 – Taking nutrition

Question 4 on the PIP2 claim form.

Nutrition management plays a major role in life with cystic fibrosis. Supervision, prompting and assistance to manage your nutrition are all factors that count when thinking about how you manage your nutrition intake.

Think about whether you need someone to prompt you to eat meals and snacks if you suffer from poor appetite. Is it harder to eat due to pain or fatigue? Do you need someone to prepare your dietetic supplements or feeds?

You may require the use of dietetic supplements or an enteral feeding tube (gastrostomy or nasogastric tube-feeding). You may require assistance from another person, such as a family member, to be able to do this.

Activity 3 – Managing therapy or monitoring a health condition

Question 5 on the PIP2 claim form.

Managing therapy and monitoring your health condition(s) are an intrinsic part of life with cystic fibrosis. You may not realise how much help and support you need to do this and to ensure you keep up with all you are asked to do by your CF team.  

Supervision, prompting and assistance are all factors which count when thinking about how you manage your treatment regime.

If someone needs to wash your nebulisers for you, mix your supplementary drinks or prepare or remind you to take your tablets and other medications, these are all examples of how you might need support to manage your condition.

Exercise recommended by your CF team can also be included in here, with exercise on prescription being a particularly good example.

It is important to demonstrate to the assessor the amount of time you spend taking medication and therapy.

Activity 4 – Washing and bathing

Question 6 on the PIP2 claim form.

Washing and bathing can be quite physically demanding tasks. You must again consider the range of your experience and convey this to your assessor. Consider whether you need the support of someone to get in and out of the bath or shower. Do you use any specially adapted equipment to aid you when washing?

You may experience breathlessness and fatigue or pain when washing the lower half of your body or when you are washing your hair.

If you are on IVs or oxygen, washing and bathing is further complicated and you should share this information with your assessor.

Simply being so fatigued by your condition that you need to be motivated or supported in washing is important information to share with your assessor, even if this is not the case the whole time.

Activity 5 – Managing toilet needs or incontinence

Question 7 on the PIP2 claim form.

Sometimes, people with cystic fibrosis have difficulties with incontinence. For example, for women with cystic fibrosis, stress incontinence can be a common problem. Daily pelvic floor exercises may be recommended and taught by your CF Team.

If you make use of aids, such as incontinence pads, you should share this information with your assessor.

Activity 6 – Dressing and undressing

Question 8 on the PIP2 claim form.

You may not think that dressing and undressing is an issue for the majority of people with cystic fibrosis but think carefully about it. Bending over to put on shoes and socks may trigger severe breathlessness, possibly leading to dizziness and fatigue.

Joint problems, as a secondary condition to your cystic fibrosis, may make certain movements uncomfortable or difficult, and mean that you need assistance to dress.  

You do not need to struggle all of the time for these criteria to apply, and if a combination of these problems leads to your struggling 50% of the time then you may fulfill the required framework.

Activity 7 – Communicating verbally

Question 9 on the PIP2 claim form.

Communicating verbally is not a problem that is associated with cystic fibrosis. It is, however, worth considering your own circumstances to potentially identify problems and disability in this area.

Activity 8 – Reading and understanding signs and symbols

Question 10 on the PIP2 claim form.

Reading and understanding signs and symbols is not a problem that is associated with cystic fibrosis. It is, however, worth considering your own circumstances to potentially identify problems and disability in this area.

Activity 9 – Engaging with other people face-to-face

Question 11 on the PIP2 claim form.

Engaging with other people face-to-face is not a problem that is associated with cystic fibrosis. It is, however, worth considering your own circumstances to potentially identify problems and disability in this area.

For example, barriers to engaging with people could include anxiety, stress or depression. If you need to use an oxygen mask, this would make face-to-face interaction difficult.

Activity 10 – Managing budgeting decisions

Question 12 on the PIP2 claim form.

Managing budgeting decisions is not a problem that is associated with cystic fibrosis directly. It is, however, worth considering your own circumstances to potentially identify problems and disability in this area.

For example, fatigue, depression, anxiety and stress may individually or collectively mean that you need support to make simple or complex budgeting decisions and, if applicable, these need to be discussed with the assessor.

Activity 11 – Planning and following journeys

Question 13 on the PIP2 claim form.

People with cystic fibrosis may experience a wide range of barriers to being able to plan and follow a journey.

Fatigue and breathlessness can be significant factors. It may be the case that using sets of stairs on public transport, at a train station for example, could cause a physical reaction that makes the journey unsafe.

If making a journey regularly takes more than twice as long as it might take a healthy person, tell your assessor.

You may need to be assisted by a friend or family member to help you get around or just to encourage you to go out. This could be for any reason but it may be the case that you experience a higher amount of stress and anxiety around clinic appointments that make it difficult to leave the house.

Anxiety, stress and/or depression might cause a person with cystic fibrosis to be unable to plan effectively or follow a journey to completion. If you often feel overwhelmed by the logistics or physical impact of an unfamiliar journey, especially if using public transport, you should tell your assessor.

Activity 12 – Moving around

Question 14 on the PIP2 claim form.

When considering your ability to move around it is important to remind yourself of the core principles of activity needing to be safely completed in a reasonable amount of time, to an acceptable standard and repeatedly.

It may be possible for you to walk over 20 metres, but that doing so leaves you so fatigued you are not able to do it repeatedly. If this is the case, you must share this with the assessor.

If you are able to cover the distance, but it takes you twice as long as a healthy person, highlight this to the assessor.

Carrying supplementary oxygen and/or struggling because of joint pain are also factors when considering your ability to move around.

Summary

The reliability framework allows the assessor to make a judgement based on more than a strict interpretation of ‘completing’ the activity.

‘In a reasonable amount of time’ means in less than twice the time it would take for an individual without any impairment.

Repeatedly means completed as often during the day as the individual activity requires. When thinking about this, consideration needs to be given to how the effects of symptoms such as pain, fatigue and breathlessness add up throughout the day.  

Think about whether completing an activity will prevent you from managing other activities subsequently.

Remember: It is easy to become accustomed to the adjustments needed to cope with your health condition, and it may take careful consideration to realise what gradual adjustments you have had to make over time.


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