Personal Independence Payments (PIP) and people with cystic fibrosis

April 2013 saw the first phase of the introduction of a new system of financial benefits to help people with disabilities to cover extra living and mobility costs they have as a result of their condition.

At present, PIP affects people who are claiming disability benefit for the first time or reporting a change in their condition.

Please make use of PIP checker to clarify your circumstances.

If you are asked to make a claim for PIP in 2014, please call the Cystic Fibrosis Trust helpline on 0300 373 1000 or email enquiries. The Trust needs to hear about your experience to help improve our advice and help express how we feel the system could be improved.

The claims process involves you writing about your condition in a questionnaire and will likely also involve a face-to-face assessment. It is important to understand the way in which this will be assessed.

The Cystic Fibrosis Trust has produced a guide to each of the assessment criteria and the way in which people with cystic fibrosis should describe their disability in relation to them.

When will I be affected?

Please use PIP checker to find out when the area in which you live will be affected.

The change from Disability Living Allowance (DLA) to PIP only affects you if you're aged 16 to 64.

If you are presently receiving DLA, you shouldn't be affected by the introduction of Personal Independence Payment (PIP) until 2015.

However, there are some exceptions. You'll be asked to make a claim for PIP if after October 2013 your:

  • Health condition or disability changes
  • DLA award is due to end and you haven't received a renewal letter

Unless either of these happens, you don't need to do anything. You'll get a letter in 2015 or later explaining:

  • What will happen to your DLA
  • How you can claim PIP

I already receive DLA

If you already receive DLA, you don't need to contact the Department for Work and Pensions (DWP) about PIP now. You'll get a letter from the DWP soon to tell you:

  • More about PIP
  • When you will be affected

I do not receive DLA and am claiming for the first time

PIP was introduced for new claims in parts of the north of England from 8 April 2013, and nationwide from 10 June 2013.

You'll have to phone DWP to make a new claim. They'll then send you a form asking you to describe how your long-term health condition or disability affects you.

What you need to do

You will need to apply for PIP when asked (even if you get an indefinite or lifetime DLA award).

When you apply, your DLA will continue until DWP makes a decision about your claim. If you decide not to apply, your DLA will end.

How do I claim PIP?

Your initial claim for PIP will be made by telephone to the Department for Work and Pensions (DWP), with an online service planned to be available in 2014.

In this first call, you will need to provide the DWP with basic information on:

  • Your personal contact details
  • Your health condition and disability
  • Periods spent in hospital or residential care
  • Payment (bank account) details

If you have any communication or contact issues, these can be discussed at this point. Contact the Cystic Fibrosis Trust helpline if you experience issues in contacting the DWP.

The DWP makes sure you meet the age and residency requirements before issuing a claimant questionnaire.

The claimant questionnaire is titled 'How your disability affects you'. This is your opportunity to describe your life with cystic fibrosis. When filling in this questionnaire it is worth using the assessment criteria guide to help you describe your experience of disability.

You will be assigned a ‘Case Manager’ at the DWP who will oversee the progression of your whole claims process.

It is worth bearing in mind at all stages of your claim that this benefit aims to enable you to live an independent life. Being able to demonstrate, with examples, how your condition negatively impacts on your ability to lead an independent life and the extra costs you incur is critical to getting the decision you deserve. Use the assessment criteria guide to help you.

As cystic fibrosis is a condition that can change every day, you should always describe the difficulties you face with everyday tasks when you are not well, as well as when you are managing your care and feeling well.

Importantly, at this stage, when returning your claimant questionnaire, you are invited to include any information you have that will support your claim.

We strongly recommend that you use this opportunity to include supporting statements from the healthcare professionals that manage your care.

What supporting information should I include with my PIP claim?

We believe that the most valuable contribution will be made by those who manage your care most closely, understand your treatment and how your condition affects your daily life.

You should ask for a supporting statement that describes why you need support and help towards the additional costs you face in living an independent life from at least one of the following:

  • Your cystic fibrosis consultant
  • Your cystic fibrosis nurse
  • Your care centre's social worker
  • Your GP
  • Any other healthcare professionals involved in your care management

You should include this information in the envelope when you return your claimant questionnaire.

We can assist you with a supporting statement that will provide general information on the impact cystic fibrosis can have on an individual's life.

Next steps

Once the claimant questionnaire and supporting information has been received by the DWP, it is highly likely that you will be asked to attend a face-to-face consultation and assessment. You will be provided with contact details to ask any questions you may have about the process and to rearrange the assessment day, if it is inconvenient.

Assessment process

You are encouraged by the DWP to have someone who can support you and attend your assessment with you, if possible. This could be a family member, friend or anyone who you feel can provide support and assistance to you on the day.

The assessment will be conducted by a healthcare professional who will ask you questions about your living circumstances, your health condition and how it affects your daily life.

The healthcare professional reviews all the evidence gathered against a set of everyday activities to assess the challenges that you face.

Read our guide to the assessment criteria.

Outcomes and appeals

A case manager at the DWP will assess all evidence, including your claimant questionnaire, supporting evidence and assessment report before making a decision on your entitlement and the level and length of award.

You will be informed of this decision by post. The letter will provide information about the decision and how it has been reached.

In the event of a negative outcome, there will be an opportunity to ask for a reconsideration of the available evidence before entering into the appeals process.

The Cystic Fibrosis Trust will provide a guide to the appeals process as this information becomes available.

Useful links

The Cystic Fibrosis Trust offers small welfare grants to give financial support to people with cystic fibrosis and their families. Read our guidelines on grants.