Expert benefits & money advice
Last year our Benefits and Money Clinic helped 178 members of our community claim over £450,000!
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.
If you're concerned about the financial impact of the coronavirus pandemic, our experienced benefits advisor has written a blog post explaining how you may be affected and what support could be available.
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.
In order to work out what level of help you will get, you will first need to call the DWP/PIP Centre. Someone else can call for you, but you need to be there with them.
When you call, you will need the following information to hand:
You will then be sent a 'How your disability affects you' form. The form comes with notes on how to fill it in, but it can be invaluable to get advice on how to fill in the form from a Citizens Advice (CA) benefits adviser.
Once you have returned your form to the DWP/PIP centre (the address is on the form), your claim will be assessed. Always keep a copy of any forms you complete before sending them back.
Sometimes the assessment can be done using your written information and information from your health or social worker. However, most times the assessment will be done as a face-to-face consultation with a healthcare professional.
The meeting can be at your home, but is often at an assessment centre. You can take someone with you, but let the assessment centre know if you are doing this.
At the assessment you will be asked questions about how you carry out daily activities and how your brain tumour affects your daily life. Take a copy of your 'How your disability affects you' form, so you can refer to it.
The assessment usually lasts about an hour. You can get advice on how to prepare for the assessment from a Citizens Advice (CA) benefits adviser.
After the assessment you will receive a letter telling you whether you will get PIP and, if so, how much. The time this takes depends on your circumstances.
If you are awarded PIP, the decision letter will also tell you when your PIP will be reviewed. The award given will be regularly reviewed at appropriate intervals to make sure you continue to get the right amount. These intervals will depend on your condition and the likelihood of it improving or worsening.
On average it takes 12 weeks to get a decision - from the start of your claim i.e. when you first rang the DWP.
This is because it takes time for the initial form to be sent out, for you to collect any supporting evidence and send it back in, time for an assessment appointment to be sent out and for the assessment to take place.
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.
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).
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.
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.
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'.
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.
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.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community - Join our online support groups.