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?
You may require the use of 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.
In addition, in a recent decision made in an Upper Tribunal states that although quality of nutrition is not a factor that is taken into account, quantity is and if someone needs, due to a medical condition, to eat a lot (as with CF) one must look at whether they need help to eat that quantity as a result of their condition.
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, or remind you to do your physiotherapy, 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, if it is undertaken at home.
It is important to demonstrate to the assessor the amount of time you need someone’s help for to undertake your treatments and therapy.
In addition, a recent decision made in an Upper Tribunal reasons that as a person will only need therapy because they have a disability, any help they then need with that therapy (whether by reason of disability or not) counts. So a claimant with CF who is overwhelmed by tasks involved in therapy (as anyone having to do that therapy would be, regardless of condition) can score points.
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. Remember, that it is how you are on most days that counts. ‘Most’ is the majority of the time, and is 50% or more of the days in the three months before your claim, and the nine months after.
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 all the 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 fulfil 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, particularly if you suffer with anxiety and depression.
For example, barriers to engaging with people could include, panic attacks, stress or avoiding the activity altogether.
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, 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. This activity considers mainly cognitive, sensory or mental health problems in this area.
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 reliably.
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.
There have been some positive changes in relation to Activity 2 and 3 (following a case in an Upper Tribunal). Upper Tribunal decisions are binding on the Lower Tribunals, but law and caselaw in this area are ever-changing, and we would advise you to seek specialist welfare benefits advice if you want to know how a decision can help your claim, or support your appeal.
If you’d like further advice, or a copy of the PIP descriptors, in order to assess yourself, please contact our Helpline.