Understanding the Personal Independence Payment (PIP) process

Personal Independence Payment (PIP) is one of the most common benefits for those affected by a brain tumour yet knowing whether you're eligible and navigating the PIP process, can be difficult. Denise, a Benefits Advisor for Citizens Advice who offers specialist adivce in our weekly Benefits Clinic, knows this first hand and is here to share her top tips for understanding PIP and this process.

Denise's top tips

What is PIP?

PIP is a disability benefit for those aged 16-64, payable when someone has a long-term health condition or disability. You become eligible for PIP if you need help with everyday tasks or getting around, have needed this help for three months and expect to need it for another nine.

A points-based system

One of the big questions I'm asked is, how do I know whether I'm eligible for PIP? Because it's a points-based system, it's relatively easy to gauge whether you're entitled. The application covers a range of activities such as eating or cooking food, communicating and mixing with others, mobility, washing and bathing etc. For each activity you need help with, you'll be awarded a 'point'. The more help you need with your daily life, the higher your points. Once you get to a certain number, the PIP award is triggered.

Begin your application as soon as possible

The standard PIP process has three stages and can take a few months to complete. That's why it's important to begin the application immediately. If your claim is successful, your payments will be backdated from the second you start the first stage (a phone call to log the claim).

Fast tracking for those with a terminal diagnosis

However, if you've been given a terminal diagnosis you can apply under the special rules. This is a 'fast track' way of claiming PIP and includes those diagnosed with high grade brain tumour. Special rules help ensure you get the support you need as soon as possible and don't waste any precious time on bureaucracy.

If you are in this position you will be given a form, DS1500, from your medical team, hospital, GP or specialist nurse, which you can send to the assessors so you'll receive the highest rate of PIP normally within a couple of weeks.

When you make the PIP phone call, you'll be asked if you want to claim under special rules. If you want to qualify, say yes and send a DS-1500 form to the assessor. Special rules will then be triggered, you'll receive the highest rate of PIP and the benefit will go through within two weeks.

Don’t be put off by the form – it’s not as daunting as it seems

Under normal rules, your next step after the phone call is to complete an assessment form. This is something we often get enquiries about as a daunting stage of the application process. However it's not as long as it seems, as many sections may not apply to you; this doesn't mean you won't be eligible.

There are 14 activities to complete, 12 are for 'daily living', two for mobility. The mobility section is more straightforward and it'll be clear if you're eligible. The daily living section, however, covers a range, from physical (mobility) and learning disabilities (reading and understanding written information) to mental health problems (mixing/communicating with others), so not everybody will have difficulties in every area. This sometimes makes people feel as if they won't qualify, but this isn't the case. It's definitely possible to get the points you need in one activity, so do persevere.

The success is in the detail

It's important to give detailed information and examples throughout the form and really think how your life's changed since diagnosis. You must have had a condition for three months before you can apply for PIP, so many people adapt during this time and find solutions.

In this initial period, you may normalise your aids, forget life before and feel as though you don't have difficulties as a result. But this is not true.

You must be able to carry out an activity safely, as often as needed and to an acceptable standard for assessors to deem it 'successful'. For instance if you can't cook without having to sit down, the activity is deemed 'unsuccessful', because you need the aid of a chair to complete the task. For each aid, you'll be awarded one point towards your PIP application.

Many people also mention having difficulty with a task but don't explain why. The more information you can give, the more the person making the decision can understand what life is like. Rather than saying 'I have difficulty showering' say 'I have difficulty showering because I can't stand up for that long' or 'because the feel of hot water on my operation site is uncomfortable'.

Don’t do it alone and don’t expect any assumption

Your assessor can't and won't make any assumptions, so if you have fatigue or memory problems – common symptoms for those diagnosed with a brain tumour – your assessor won't assume you have these.

This is why detailed information, supported by examples, is crucial. One way to ensure your form's as informative as possible is to get advice from someone else, like a friend or family member. You can even book an appointment with me – I'm at The Charity every Tuesday to advise those affected on the benefits system and can help you complete the form and ensure it's detailed.

The final step

Your last step will be a face-to-face appointment. Be prepared to talk about how your condition affects you day-to-day and what a bad day is like.

Assessors often ask for information that you have covered on your form, so you may need to repeat yourself – taking a copy of your form with you can help. The assessor will make a note of all your responses, including your mental state during the assessment. They'll also take notes on, for instance, if you travelled by bus, noting you can travel on public transport alone.

However, if you're uncomfortable with anything they ask, tell them. And if you need someone with you, whether for moral support or to join discussions and take notes, let the centre know beforehand; as long as the person is over 16, this should be fine.

You can also ask for relevant adjustments if the centre doesn't have everything you need, for instance a lift if you need to go upstairs and struggle with this. You can also ask to change your venue if it's over 90 minutes away and you have difficult travelling - you may need evidence for this from your doctor.

Book an appointment at the Benefits Clinic

If you need any help understanding and navigating the benefits system, Denise is here every Tuesday from 9:30am-4:30pm.

Find out more and book an appointment

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