Brain tumours and PIP (Personal Independence Payment)

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.