Cystic Fibrosis Social Workers’ Group PIP criteria guidance

This is the interim PIP guidance created for and with the Cystic Fibrosis Social Workers’ Group.

Please take the time to look over it and provide us with your thoughts and feedback.

We will need your support, thoughts and comments to expand and develop it into a useful tool to help all social workers to provide targeted PIP guidance. Eventually, we hope to supply this as a fully-formed booklet to support CF social workers and as a means of providing information for other professionals who are responsible for welfare support where a specialist social worker is not available.

Your feedback is essential in getting it to the best format and content possible, to become an essential document in PIP applications for individuals with cystic fibrosis. Please do share the document more widely and feedback comments from your wider colleagues.

There is a space below each criteria description for you to feedback on our analysis and interpretation. All comments are welcome.

Please send comments to

Activity 1: Preparing food

a. Can prepare and cook a simple meal unaided. 0 points.

b. Needs to use an aid or appliance to be able 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.

Preparing food is key for people with cystic fibrosis. Maintaining a healthy weight can be a huge challenge for someone with cystic fibrosis, and food preparation is vital to this.

  • If the individual uses a microwave to cook in order to avoid fatigue, breathlessness or pain that would be experienced using a conventional cooker they are likely to obtain two points from the criteria.
  • Make sure the range of experience is conveyed; an individual’s ability to cope will vary from day to day.
  • If the individualis too lethargic to want to prepare a meal, describe how they need encouragement and assistance preparing it.The language used should reflect the assessment criteria above.
  • High calorie needs can equal a significant amount of food preparation. The frequency of meals and snacks needed means it is relentless and often leads to support being required. Supporting information from the CF team can help to demonstrate how high this burden is.
  • Consider whether the microwave is being used because repeat preparation of meals using conventional methods would be exhausting.
  • If the individual is tethered to oxygen tubing explain the difficulties this causes and the concern around oxygen being near a naked flame, or safety issues related to tubing tangling with cooking equipment. Assistance may be required for this reason.

Remember, this criteria focuses on preparation of food; the eating of a meal and nutritional requirements is covered separately in Activity 2.

PIP Social Workers’ Group comments:

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Activity 2: Taking nutrition

a. Can take nutrition unaided. 0 points.

b. Needs –

(i) to use an aid or appliance to be able to take nutrition; or

(ii) supervision to be able to take nutrition; or

(iii) assistance to be able to cut up food. 2 points.

c. Needs a therapeutic source to be able to take nutrition. 2 points.

d. Needs prompting to be able to take nutrition. 4 points.

e. Needs assistance to be able to manage a therapeutic source to take nutrition. 6 points.

f. Cannot convey food and drink to their mouth and needs another person to do so. 10 points.

Nutrition management plays a major role in life with cystic fibrosis.The assessors will not be able to award points based on this alone, and it is necessary to explain the requirements this leads to.

  • State any dietetic recommendations in relation to the criteria, in full, on the form e.g. recommended calorific intake.
  • Consider how a person struggling to maintain a healthy weight (BMI), whilst fighting a low appetite may need prompting and assistance with food consumption. Make sure to include any medical evidence of difficulties maintaining weight, to support the argument.
  • Calorie intake needs to be increased during a chest infection, as the body is burning a lot of energy fighting the infection. Remember to think about increased needs during these periods, and how frequently this occurs.

Note any mental health issues in relation to lack of appetite and motivation to eat. Reference this in support letters, so that the importance of prompting and assistance is underlined.

PIP Social Workers’ Group comments:

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Activity 3: Managing therapy or monitoring a health condition

a. Either –

(i) does not receive medication or therapy or need to monitor a health condition; or

(ii) can manage medication or therapy or monitor a health condition unaided. 0 points.

b. Needs either –

(i) to use an aid or appliance to be able to manage medication; or

(ii) supervision, prompting or assistance to be able to manage medication or monitor

a health condition. 1 point.

c. Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week. 2 points.

d. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week. 4 points.

e. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week. 6 points.

f. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week. 8 points.

Managing therapy and monitoring your health condition(s) are an intrinsic part of life with cystic fibrosis. Supervision, prompting and assistance are all factors which count when thinking about how you manage your treatment regime.

It is important to note that the assessment does not look at the availability of help from another person, but rather at the underlying need. As such, claimants may be awarded descriptors for needing help even if it is not currently available to them- for example, if they currently manage in a way that is unreliable but could be made safe with assistance.

  • Take into account periods spent on intravenous antibiotics. When these are prescribed, they are usually given 3 times in 24 hours, and can take an hour per treatment. Note any assistance required to mix up home IVs. Consider this on top of the usual treatment regime.
  • 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 spent taking medication and therapy. Even relatively well people with cystic fibrosis will have a high burden of treatment in order to stay well.

PIP Social Workers’ Group comments:

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Activity 4: Washing and bathing

a. Can wash and bathe unaided. 0 points.

b. Needs to use an aid or appliance to be able to wash or bathe. 2 points.

c. Needs supervision or prompting to be able to wash or bathe. 2 points.

d. Needs assistance to be able to wash either their hair or body below the waist. 2 points.

e. Needs assistance to be able to get in or out of a bath or shower. 3 points.

f. Needs assistance to be able to wash their body between the shoulders and waist. 4 points.

To qualify as able to do the activities, they must be completed safely, reliably and in a reasonable amount of time. If doing the activity causes dizziness which would make it unsafe, takes more than twice the length of time it would take a healthy person, or cannot be carried out as often as it should be- then you are considered unable to do it.

  • Breathlessness often makes washing a bathing challenging, more so with an active chest exacerbation.
  • Consider any help needed getting into or out of the bath because of pain, breathlessness or fatigue.
  • If someone helps to wash hair whilst a port is accessed, or line in, mention this on the form and to the assessor.
  • Mention any equipment used to make showering easier e.g. shower board.
  • Prompting to wash or bathe may be particularly necessary when someone is acutely unwell and washing seems overwhelming or unimportant.
  • When attached to oxygen washing and bathing is further complicated and this should be sharedwith the assessor.
  • Simply being so fatigued by your condition that you need to be motivated or supported in washing is key detail to explain, even if this is not the case the whole time.

PIP Social Workers’ Group comments:

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Activity 5: Managing toilet needs or incontinence

a. Can manage toilet needs or incontinence unaided. 0 points.

b. Needs to use an aid or appliance to be able to manage toilet needs or incontinence. 2 points.

c. Needs supervision or prompting to be able to manage toilet needs. 2 points.

d. Needs assistance to be able to manage toilet needs. 4 points.

e. Needs assistance to be able to manage incontinence of either bladder or bowel. 6 points.

f. Needs assistance to be able to manage incontinence of both bladder and bowel. 8 points.

Digestive issues, stress incontinence and pain and breathlessness are all issues which can affect how well someone with cystic fibrosis can manage their own toilet needs.

  • Sometimes joints are painful and can make movements such as lifting up from the toilet more difficult than it would otherwise be.
  • Challenges in assessing the correct dose of supplementary pancreatic enzyme, taken with every item of food or fatty drink can lead to constipation or runny stools- which requiresstaying close to a toilet, and possible leakages resulting in having to wear an incontinence pad.
  • If acutely unwell, or reaching end stage cystic fibrosis, patients may be too exhausted and breathless to manage their toilet needs independently and may require significantly more assistance.

PIP Social Workers’ Group comments:

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Activity 6: Dressing and undressing

a. Can dress and undress unaided. 0 points.

b. Needs to use an aid or appliance to be able to dress or undress. 2 points.

c. Needs either -

(i) prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or

(ii) prompting or assistance to be able to select appropriate clothing. 2 points.

d. Needs assistance to be able to dress or undress their lower body. 2 points.

e. Needs assistance to be able to dress or undress their upper body. 4 points.

f. Cannot dress or undress at all. 8 points.

Be sure to think through each stage of the dressing process. There are many elements which may be affected by cystic fibrosis and its complications.

  • Joint problems, as an ancillary condition to cystic fibrosis, may make certain movements uncomfortable or difficult, and mean that assistance is needed to dress. Such problems can be exacerbated by an active chest infection.
  • If hands are particularly badly affected, buttons, zips and other fastenings may be a particular issue.
  • Bending over to put on shoes and socks may trigger severe breathlessness, possibly leading to dizziness and fatigue.(2 points)
  • Dressing may lead to breathlessness and fatigue, therefore requiring assistance from to get dressed and undressed. (4/8 points)
  • An individual may need to rest part way through dressing to catch their breath, meaning it takes more than twice the amount of time it would normally take a healthy person.
  • Putting on a bra can be challenging, both because of how it restricts breathing and also managing the fastenings behind ones back.
  • Clothing can often be uncomfortable- being too tight around the lungs or stomach. Individuals may need prompting to get dressed into clothing appropriate for the occasion rather than what is most comfortable. (2 points)

PIP Social Workers’ Group comments:

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Activity 7: Communicating verbally

a. Can express and understand verbal information unaided. 0 points.

b. Needs to use an aid or appliance to be able to speak or hear. 2 points.

c. Needs communication support to be able to express or understand complex verbal information. 4 points.

d. Needs communication support to be able to express or understand basic verbal information. 8 points.

e. Cannot express or understand verbal information at all even with communication support. 12 points.

Communicating verbally is not a problem that is associated with cystic fibrosis. It is, however, worth considering an individuals’ specific circumstances to identify problems and disability in this area.

  • Lack of confidence may be an issue in patients with cystic fibrosis. Patients that cough or easily get out of breath when they talk may struggle to make themselves understood and feel acutely self-conscious. They may then panic and feel that they cannot communicate effectively. An individual may therefore need support when expressing themselves.
  • Anxiety and depression is often a huge barrier to good communication, and the nature of an illness like cystic fibrosis means worry and anxiety is par for the course. Anxiety and worry may lead to strugglesin communicating effectively and also in comprehending information given to the sufferer. Levels of comprehension may be dependent on the extent of the anxiety.
  • Identify any issues around engaging with the whole of the Multi-Disciplinary CF Team regarding health issues. Many adults and most teenagers bring parents/others to clinic. A lot of prompting goes on about giving relevant information and support in receiving complex information from the team.

PIP Social Workers’ Group comments:

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Activity 8: Reading and understanding signs, symbols and words

a. Can read and understand basic and complex written information either unaided or using spectacles or contact lenses. 0 points.

b. 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.

c. Needs prompting to be able to read or understand complex written information. 2 points.

d. Needs prompting to be able to read or understand basic written information. 4 points.

e. Cannot read or understand signs, symbols or words at all. 8 points.

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

  • Patients who struggle with anxiety and depression may struggle to comprehend complicated letters which will lead to them panicking, and often putting them in a drawer and not responding. They may need help from family, friends or a welfare advisor to ensure they are comprehended and dealt with.
  • Certain medications can make the thought process less clear. This should be backed up with medical supporting evidence. (2 points)
  • Severe breathlessness (especially if accompanied by low oxygen saturations) and fatigue can lead to a ‘foggy head’, and lower levels of comprehension. (2 points)

PIP Social Workers’ Group comments:

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Activity 9: Engaging with other people face to face

a. Can engage with other people unaided. 0 points.

b. Needs prompting to be able to engage with other people. 2 points.

c. Needs social support to be able to engage with other people. 4 points.

d. 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.

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

  • Barriers to engaging with people could include anxiety, stress or depression. The need to use an oxygen mask would make face-to-face interaction difficult.
  • In someone who has been isolated due to ill health, engaging with people may cause anxiety. If a familiar person is there to support a patient it can help them to feel slightly more confident when answering questions. (4 points)
  • Extended periods of hospitalisation may lead to a patient having panic attacks or palpitations in public. This must be explained on the form and to the assessor.
  • People with cystic fibrosis may feel embarrassment over the need to use the toilet with urgency, coughing fits, not being able to keep up with their peers and taking medications in public. These factors may all lead to greater reticence when it comes to engaging with other people face to face.

Identify any issues around engaging with the whole of the Multi-Disciplinary CF Team regarding health issues. Many adults and most teenagers bring parents/others to clinic. Some people may find engaging with medical professionals particularly challenging, especially at a time of heightened anxiety such as before clinic, when they may worry about how their lung function, weight and other numbers will be and the information they will be given. This makes the need for help with the communication more likely.

PIP Social Workers’ Group comments:

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Activity 10: Making budgeting decisions

a. Can manage complex budgeting decisions unaided. 0 points.

b. Needs prompting or assistance to be able to make complex budgeting decisions. 2 points.

c. Needs prompting or assistance to be able to make simple budgeting decisions. 4 points.

d. Cannot make any budgeting decisions at all. 6 points.

Having difficulty 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.
  • Similarly, poor health can make a situation feel overwhelming and lead to the need for assistance when making decisions.
  • Explain who deals with finances if it not the patient, and the reason why this happens.

PIP Social Workers’ Group comments:

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Activities eleven and twelve are the only two taken into account when assessing an individuals’ eligibility for the Mobility element of Personal Independence Payment.

Activity 11: Planning and following journeys

a. Can plan and follow the route of a journey unaided. 0 points.

b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points.

c. Cannot plan the route of a journey. 8 points.