Personal Independence Payment if you have a terminal illness
Personal Independence Payment (PIP) is a tax-free benefit that helps with the extra costs of having a disability or health condition if you’re aged 16 to 64 (inclusive).
This information is for people applying under the special rules because they have a terminal illness.
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If you’re living with a terminal illness, you might be able to apply under the special rules. This means that your claim for PIP might be fast-tracked, you won’t need a face to face assessment, and you’ll be paid the daily living component at the highest rate.
You may be eligible to claim PIP under the special rules if:
- you’re aged 16 to 64 (inclusive)
- your health condition or disability has made day-to-day living and/or getting around difficult
- you are currently living in the UK
- your death can be reasonably expected at some point in the next six months.
You might not be sure whether your death can be reasonably expected in the next six months. It’s often very difficult to know how long someone might live for and it might not be something you’ve talked about with your doctor. If your doctor hasn’t talked with you about how long you might live for, you can still ask them about supporting your claim under the special rules.
You can find out more about citizenship and residential criteria at GOV.UK .
It’s not means tested so it doesn’t matter how much income or savings you have.
If you’re not sure whether you might qualify, you could look at getting benefits advice.
Many people with a terminal illness are expected to live longer than six months. You can still apply for Personal Independence Payment. There is a different process for applying – it takes longer and you’ll usually need a face to face assessment. You can find out more at:
Other things to think about
You can claim PIP whether you’re working or not working. It is not based on whether you have paid National Insurance contributions.
You may spend it on anything you like. Getting PIP can also help you to claim other benefits.
If you don’t qualify for PIP because of your age, you might be able to claim:
PIP has two components – a daily living component and a mobility component. You can get money from one or both components, depending on your needs.
Each component has two rates depending on your need – a standard rate and an enhanced rate.
- daily living component for help taking part in everyday life
- standard rate: £55.65 a week
- enhanced rate: £83.10 a week
- mobility component for help with getting around
- standard rate: £22 a week
- enhanced rate: £58 a week.
For the daily living component, you will automatically get the enhanced (higher) rate of £83.10 if your claim is accepted under the special rules.
For the mobility component, you get the standard rate if your mobility needs are limited, and the enhanced rate if your mobility needs are severely limited. You won’t automatically get the mobility component if you’re claiming under the special rules – it depends on your needs.
Phone the government department
In England, Wales and Scotland, you can start your claim by phoning the Department of Work and Pensions (DWP) on 0800 917 2222 (textphone 0800 917 7777).
If you’re in Northern Ireland, you’ll need to phone the Personal Independence Payment (PIP) centre on 0800 012 1573 (textphone 0800 012 1574).
If you might qualify under the special rules because you have a terminal illness, you should tell them this.
During this call, which should last about 15 minutes, you’ll be asked for some basic information, including questions about your health and mobility. The date of your claim will be the date of this phone call, as long as you provide the information required. It’s not possible to backdate a claim for PIP to an earlier date.
You’ll need to give the following information when you call:
- Your full name, address and phone number
- Your National Insurance number
- Your bank or building society account details
- Your nationality or immigration status
- Contact details of your GP or other health professionals caring for you
- If you’ve stayed in a hospital or other type of residential care, the dates and details
- If you’ve been abroad for any periods over the last three years (including the dates and reasons for travel).
You’ll be asked to send a factual statement (called a DS 1500 report) from your doctor or consultant to the Department for Work and Pensions (DWP), or Department for Communities (DfC) in Northern Ireland, when you make the claim. Your doctor or consultant should have copies of these forms and will fill one in for you before sending it back to you or directly to DWP or DfC.
You can make the initial phone call before the DS1500 report is ready. The claim will be dated from the initial call.
Mobility component assessment
If you’re claiming for the mobility component, they will consider your ability to:
- plan and follow journeys
- move around.
This is usually assessed with a face-to-face assessment, but you don’t need to do this if you are claiming under the special rules.
You can claim on someone’s behalf. If you’re making a claim on someone’s behalf, you should tell them that you’re making a claim and you’ll need their personal details.
You don’t need to tell them that you’re making a claim under the special rules or that their death can reasonably be expected in the next six months. You will need to ask their doctor to support their claim.
PIP is normally paid into your bank or building society account every four weeks in arrears. However, it may be paid weekly in advance if you qualify under the special rules.
You can spend it on what you like and you don’t have to spend it on disability-related needs. Payment normally stops if you go into hospital or a care home for 28 days or longer.
Payments are usually made until your death. if payments are still being made after three years, your claim will be reviewed.
If the Department for Work and Pensions (DWP), or Department for Communities (DfC) in Northern Ireland, thinks that you don’t qualify under the special rules, they’ll go on to consider your claim under the ordinary PIP assessment (see above).
If you’re refused PIP or you disagree in any other way with the DWP or DfC’s decision on your claim, you have one month to ask for them to reconsider their decision. If you’re not happy with the outcome of this, you have one more month to appeal to a tribunal. In England, Wales and Scotland, you can download the appeal form SSCS1 from GOV.UK . In Northern Ireland, you can download the appeal form N0A1(SS) from nidirect .
If you are already receiving Disability Living Allowance (DLA), and were under the age of 65 on 8 April 2013, you will be invited to claim PIP instead of DLA at some stage. Details of this re-assessment are in our information about Disability Living Allowance.
If you’re already getting PIP, but do not get the enhanced rate of the daily living component and become terminally ill, you don’t have to make a separate claim under the special rules.
If you’re in England, Wales or Scotland, you can call the PIP enquiry line on 0800 121 4433 (textphone 0800 121 4493).
If you’re in Northern Ireland, you can call the Personal Independence Payment Centre on 0800 587 0932 (textphone 0800 587 0937).
Or you can write to the address on your award letter and ask for the award to be reviewed on the basis that you are now terminally ill.
You don’t have to send a DS 1500 report (see above) immediately, but it will speed up the decision if you do.
If you’re successful, the enhanced rate of the daily living component can be backdated to when you first became terminally ill. You’ll need to tell the Department for Work and Pensions (DWP), or Department for Communities (DfC) in Northern Ireland, within one month of this date to get the claim fully backdated. If it has been longer than one month, the enhanced rate can still be fully backdated if special circumstances caused the delay. For example, that you were too ill or distressed to apply. If this happens, you should contact the DWP or DfC and explain why it has taken you longer.
If there is a change in your circumstances or you gave incorrect information by mistake, you need to report it.
About this information
Marie Curie's Information and Support team has produced this information with help from:
- Director of Corporate Services, Marie Curie
- Disability Rights UK
- Our Readers Panel volunteers.
This information is not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
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