The Personal Independence Payment (PIP) allowance is a UK government financial assistance programme to help cover the costs of everyday life for individuals living with a long-term illness or disability.

The process of applying for PIP can seem daunting as the form is long and complicated so below you will find an overview of the form and an application guide. We are experienced in supporting people with all types of EB to apply for PIP and so please get in touch as it may save you a lot of time. Contact your Community Support Manager to get started.


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PIP Overview 

Personal Independence Payment for EB information on gov.ukPIP allowance is formed of two components: 

- the daily living component helps cover the additional costs of everyday tasks
- the mobility component helps cover the additional costs of getting around.

Each component has a standard rate and an enhanced rate (for people more severely impacted by their condition). People living with EB might be eligible for both, one or neither components.

Do not be discouraged from applying for PIP because of the type of your EB. PIP is dependent on how your condition affects you individually, not the condition itself.

Please read through the guidance below and contact your Community Support Manager if you need help completing any part of your application.


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PIP is not means-tested and is tax free, it is awarded regardless of income, savings or National Insurance (NI) contributions. You are able to receive PIP allowance whether or not you are working, regardless of whether you receive most other government-backed benefits (e.g. Carers Allowance) and there are no restrictions on how you can spend it. However, in order to quality for PIP, you must meet the following criteria:

  • Age – you must be between 16 and 64 (or below your state pension age). If you are over 64 (or at your state pension age), you are not eligible for PIP but may be eligible for other benefits (e.g. Attendance Allowance).
  • Daily living and/or mobility test – you will be assessed on how your life is impacted by your condition (these are assessed on a minimum of three months, with a view of the condition not improving over the full twelve-month period)
  • Immigration – you must not be subject to immigration control (e.g. you must not be on a temporary VISA that states you have no recourse to public funds)
  • Residency – you should normally be living in the UK (England, Scotland, Wales and Northern Ireland) for 104 of the last 156 weeks (i.e. two of the last three years)

You still may be eligible for PIP even if you do not meet all of the criteria above and can prove you have exceptional circumstances (e.g. Refugee status).

Please visit the Government’s website for more information on PIP eligibility.

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Application Process

Personal Independence Payment for EB guidance flowchart

The flowchart pictured shows the process you will need to go through to claim PIP. Click on the image to see a larger version.

Following an initial call to the PIP claim line, you will receive a ‘how my disability affects me’ (PIP2) form in the post. The PIP application is long and time-consuming (two or more hours to complete) but we are very experienced on what to include if you would like help with your application. Your EB Community Support Manager is able to help with all steps of the application process, including eligibility, challenging decisions and advocating on your behalf at a tribunal.


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Step 1 - PIP claim line

Everyone living with EB, no matter which type you have, is encouraged to apply for PIP allowance. You, or someone on your behalf, will need to call the PIP claim line between 8am - 5pm, Monday to Friday:

  • Department for Work and Pensions (DWP) - England, Scotland and Wales: 0800 917 2222 (textphone 0800 917 7777)
  • Department for Communities (DfC) - Northern Ireland: 0800 012 1573 (textphone 0800 012 1574)

There are other options for calling the claim line if you cannot hear or speak, visit the Government website.

The date of the call marks the official date of your claim. You will be asked some basic information:

  • Full name
  • Date of birth
  • Current address
  • Current telephone number
  • National Insurance number
  • Bank or building society account details
  • Current GP (or other health professional's details)
  • Recent medical stays in hospitals, care home or hospices
  • Travel history (e.g. time spent out of the country)
  • Nationality or immigration status
  • Condition(s) – for applicants who are terminally ill

Following the call, you will receive in the post either a ‘how my disability affects me’ form (PIP2) or a letter explaining why you do not qualify. Disability is not assessed at this stage; this is assessed at the face-to-face or phone consultation after completing the PIP2 form.

If you have been told you do not qualify, you may be able to start a new claim. Talk to your DEBRA Community Support Manager for additional support or advice.

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Step 2 - completing the form

Personal Independence Payment for EB formsThe PIP2 form is long and complicated but does not have to be completed in one sitting. It will ask about your condition and how it affects your everyday living. You will be able to provide additional information and evidence, for example, supporting information from carers, family and friends.

We have provided an overview of the questions on the form below:

PIP2 form guidance

You will have up to 28 days to complete the form, and if not returned within this time your claim will be closed. Contact your DEBRA Community Support Manager if you would like help completing it, making sure to inform them of the deadline.

If you are unable to complete the form within this time, you must contact the Department for Work and Pensions (DWP) or Department for Communities (DfC) in Northern Ireland, to ask for an extension. An extension will not affect the outcome of your case.

When you return the form, you should consider sending it by recorded delivery or another tracked delivery service.

Please see our questions prompts specifically written for the EB Community and contact your DEBRA Community Support Manager for help with any or all parts of your application.

PIP2 form guidance

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Step 3 - application assessment 

When you send in your completed PIP2 form and supporting evidence, the information will be reviewed by a health professional. In some cases, there may be enough information to make an official assessment; however, in most cases, applicants will be invited to a consultation by phone. This will be an assessment by a health professional, physiotherapist or occupational therapist.

You will be asked about your everyday living, including how you manage your home and work situations (if applicable), as well as your social and leisure activities. You will most likely be asked what a typical day is like. The assessment considers whether the condition affects you for more than 50% of the time, so you may want to keep a diary of everyday life, detailing the impact of bad days.

Give as much detail as possible. You may want to mention:

  • if you experience pain or tiredness with any activities
  • your ability to do the same activities repeatedly
  • if you need cues or reminders to complete activities
  • if your condition varies day by day and what activities make it worse
  • explain what both good and bad days are like – e.g. if a bad day (or week) means that you cannot walk and how that impacts your daily life

The health professional will summarise what you’ve discussed and you will be able to clarify anything or ask questions before they provide a report to the case manager.

You can find more information about the process and the consultation on Citizens Advice also offers further information about preparing for an assessment.

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Step 4 - the decision

Once a decision has been made, you will receive a letter by post from the DWP/DfC with the decision and an explanation of how and why that decision was made.

PIP is awarded:

If you are successful, your letter will tell you which component of PIP you have been awarded, the rate(s) you will receive over a fixed period of time, when you should expect to receive the payment and how often.

PIP can be awarded for a short time (1-2 years) or longer (5-10 years); you will only receive PIP indefinitely if you receive PIP for both components and the case manager considers your condition unlikely to change in the future. All cases will be periodically reviewed to make sure you receive the most appropriate level of support and there is a possibility that your allowance for one or both components may increase or decrease with each review.

If you feel you are not receiving the correct rate of PIP allowance, you have the option to challenge the decision. Please contact your DEBRA Community Support Manager if you choose to challenge your rate of allowance.

PIP is not awarded:

If you have not been awarded a PIP allowance, your letter will tell you why this decision was made; you may also receive a phone call to talk through the decision.

If you feel you were unjustly denied a PIP allowance, you have the option to challenge the decision. You cannot appeal a decision without first challenging the decision.

Please contact your DEBRA Community Support Manager if you choose to challenge the decision for your denied PIP claim.

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Challenging the decision

Personal Independence Payment for EB guidanceYou can challenge the decision for the rate of allowance or a denied claim, this is called a mandatory reconsideration. You can challenge the decision by phone, letter or using this online form.

You can ask to see all of the evidence used to make the decision and can also request no further action be taken until you have had a chance to review the information and respond.

If the original decision is overturned, you will receive your new rate from the date of your original claim. If the original decision stands, you can ask for a formal appeal to an independent tribunal (HM Courts and Tribunal Services). This must be done within one month from the date on the letter stating the outcome of the mandatory reconsideration. If you cannot meet this deadline, you still may be able to request an appeal in certain circumstances.

The appeal will involve completing a SSCS1 form detailing your case and why you disagree with the decision, as well as the rate of PIP allowance you feel you should receive and the reason. You should also include the original mandatory reconsideration notice.

We are unable to provide legal advice; however, your Community Support Manager can be present to advocate on your behalf. The tribunal will also include a judge and a doctor who has heard of EB and potentially a disability advisor.

Once a decision has been made by the independent tribunal, this decision is final; however, you can begin a new claim and start the process over from the beginning.


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Claiming PIP if you're terminally ill

To enable people who are terminally ill to receive support more quickly, there are more lenient and simplified rules. If this applies to you, you do not have to meet the qualifying period for the daily living and/or mobility test, nor be normally resident in the UK (but you should be resident at the time of claiming).

Terminally ill applicants should include a DS1500 form (available from your GP or consultant). You will not be required to complete part of the application and will not have to attend a consultation. However, you will be asked questions about your condition and how it affects your ability to get around.

Terminally ill PIP recipients will automatically qualify for the enhanced rate of the daily living component but it does not impact the mobility component rate, which is still determined by your ability to get around.

Claiming PIP for terminally ill people should be done over the phone:

  • England, Scotland and Wales – 0800 917 2222
  • Northern Ireland – 0800 012 1573

The person who is terminally ill can make the call themselves or be present when someone else makes the call on their behalf.


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