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Brain tumours and PIP (Personal Independence Payment)

Personal Independence Payment (PIP) is one of the most common benefits for those affected by a brain tumour. But, knowing whether you’re eligible and navigating the PIP process, can be difficult. That’s why we’ve created this guide to understanding brain tumours and PIP.

On this page, we’ll cover:

What is PIP?

PIP stands for Personal Independence Payment.

PIP is a disability benefit for those aged 16-65, payable when someone has a long-term health condition or disability.

You become eligible for PIP if you need help with everyday tasks (called Daily Living) or getting around (called mobility), have needed this help for three months and expect to need it for another nine months.

Can you claim PIP for a brain tumour?

Personal Independence Payment (PIP) is a benefit to help with the extra costs of a long-term health condition or disability. PIP is paid at different rates depending on your individual circumstances. The amount you get depends on how your condition affects you, not on the condition itself.

So, you might be eligible for PIP if you have a brain tumour, depending on how this impacts your day to day life.

But, you will have to show why you need PIP. In the sections below we’ll discuss how to apply and give you some tips for the process.

How to apply for PIP if you have a brain tumour

In order to work out what level of help you will get, you will first need to call the DWP/PIP Centre on 0800 917 2222. 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:

  • your contact details e.g. telephone number
  • your date of birth
  • your National Insurance number (found on letters about tax, pensions or benefits)
  • your bank or building society details (account number and sort code)
  • your doctor or health worker’s name, address and telephone number
  • details of any time you have spent abroad, in a care home or in hospital (dates and addresses).

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. If you have any medical evidence that confirms anything that you put on the form, send this in too.

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 and medical evidence that you send.

What happens during a PIP assessment?

Sometimes the assessment can be done using your written information and information from your health professional or social worker. However, most times the assessment will be done as a face-to-face or telephone consultation with a healthcare professional.

The meeting can be at your home, but usually it is done over the phone or face to face at an assessment centre. You can have someone with you, but let the assessor know if you are doing this.

During the assessment you will be asked questions about how you carry out daily activities, how your brain tumour affects your daily life and whether there is any impact on your ability to mobilise. Have 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 but it can be quite a few weeks.

If you are awarded PIP, the decision letter will tell you when your PIP will start and when it 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. PIP is often awarded for 2 – 5 years.  It is rarely awarded for an indefinite period.

Our experienced Benefits and Money Advisor providing advice on PIP over the phone to someone affected by a brain tumour

Expert benefits & money advice

Between April 2020 and March 2021 we were able to support 285 people through the service, helping them claim over £950,000 collectively.

How long does it take to be given PIP?

On average it takes about 12 weeks to get a decision – from the start of your claim i.e. when you first rang the DWP.  However, sometimes it can be much longer.  There can be delays with the PIP department or with the company who do the medical assessments.

This is because it takes time for the initial form to be sent out, for you to complete and return the form, to collect any supporting evidence and send it back in, have an assessment appointment and for PIP to make a decision and send it out to you.

Top tips for getting PIP if you have a brain tumour

Denise is a Benefits Advisor for Citizens Advice who offers specialist advice in our weekly Benefits Clinic. Here she shares her top tips for understanding PIP and the application process.

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 daily activities such as eating or cooking food, communicating and mixing with others, washing and bathing etc.  It also considers two mobility activities – planning a journey or moving around. For each activity you need help with, you’ll be awarded some ‘points’. The more help you need with your daily life, the higher your points. Once you get 12 or more points for Daily Living and/or Mobility, the PIP award is triggered. Citizens Advice can give you the list of activities and the points system.

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 start from the day you made the first phone call to start 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, SR1, from your medical team, hospital, GP or specialist nurse.

When you make the PIP phone call to start your claim, you’ll be asked if you want to claim under special rules. If you want to qualify, say yes and send the SR1 form to them. Special rules will then be triggered, you’ll receive the highest rate of PIP Daily Living and the benefit should go through within two weeks. If you think that you should also get the Mobility element, you will need to fill in the claim form for this.

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 it can be a daunting stage of the application process. However it’s not as long as it seems, as many sections may not apply to you. And, 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 (preparing food, bathing, dressing) 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 or from a collection of activities, so do persevere.

It’s important to give detailed information and examples throughout the form and really think about 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 award you points for it. For instance if you can’t cook without having to sit down then you are likely to get some points, because you need the aid of a chair to complete the task.

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 because I have dizzy spells’ or ‘because the feel of hot water on my operation site is uncomfortable’.

Your assessor can’t and won’t make any assumptions about how your disability effects you, 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 a benefits advisor like me – Our benefits and money clinic is run on Tuesday, Wednesday and Thursday’s. Our advisors are there 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 an assessment. Be prepared to talk about how your condition affects you day-to-day, what a bad day is like and how often you have bad days.  Try not to underestimate the difficulties that you experience.

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. If you have a face to face appointment, they will 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 assessment centre know beforehand; as long as the person is over 16, this should be fine.

If you are asked to do a face to face assessment, 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.

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