On 9 January, the Public Accounts Committee reported that people are waiting for more than a year to have their disability claims processed – pushing them into debt.
The Department of Work and Pensions (DWP) aims to process three quarters of claims within 15 weeks. But the Committee, set up to scrutinise Government spending, found that in 2024-25 only around half were processed in that time. It said the delays by the DWP were “unacceptably poor service.”
As our financial impact report showed, many people face financial challenges as a result of their own or a loved one’s brain tumour diagnosis. They may need to reduce their working hours or stop working completely because of treatment or to provide care and support.
Those who can continue working face the additional costs of traveling to and from appointments , accessibility aides, and overnight accommodation, placing an extra financial burden on those who are already navigating a life-altering diagnosis.
Add in the rising cost of living, and it seems only fair that a simple process exists to enable families affected by brain tumours to access financial support. So why does claiming that support sometimes feel like an additional burden?
Here, our volunteer Chandos Green gives his insight into applying for the disability benefit, PIP.
Understanding PIP: the new Disability Living Allowance
First, let’s clarify what PIP is, and what it is not.
PIP stand for Personal Independence Payment and it’s a benefit that’s designed to help people living with a disability or long-term health condition. It recognises the additional financial burden, such as the cost specialist equipment, taxis, or extra heating, that this brings.
In 2013, it replaced the Disability Living Allowance but, similarly, the scheme is run by the DWP. Crucially, it is NOT an out-of-work benefit. Claimants can receive PIP whether they are working, studying, or unemployed.
Nor is it means-tested. This means it is not based on savings, income, or a partner’s earnings. Eligibility is purely based on how a condition affects an individual.
Making a claim
When I’ve enquired about making a claim, I’ve been sent either a PIP 2 form (for a new claim) or a PIP review form (for an existing one). These forms must be completed and returned within a certain timeframe – although an extension can be requested by phoning the DWP.
After a few months (often longer due to the backlogs mentioned above), the claimant receives an appointment with a qualified healthcare professional working for one of the private organisations contracted by the DWP. Their job is to assess claims for PIP against set criteria, which I explain below.
Those assessments may be conducted in person, by phone, or via video call. The assessor writes a report and sends it to the DWP. The DWP then uses this assessment, alongside the initial evidence set out in the application form, to determine the final award.
The criteria: Daily Living and Mobility Components
Claims are assessed against set criteria in two distinct categories: the Daily Living Component and the Mobility Component.
The Daily Living Component is made up of 10 activities, ranging from preparing food, managing treatments, communicating, and engaging with others.
The Mobility Component focuses specifically on planning, journeys and moving around (covering physical and non-physical movement difficulties).
Claimants are given a score on each activity from zero points upwards. A score of 0 means the activity can be done safely, to an acceptable standard, repeatedly, and in a reasonable time, without the help of another person, aid or appliance.
Currently, to receive the Standard Rate for a component, claimants need 8 points across those activities. To be eligible for the Enhanced Rate, claimants need 12 points across those activities.
This scoring framework means that the focus is not on the diagnosis itself but on the functional impact of that diagnosis or disability i.e., what the claimant can and cannot do on most days.
Why advocacy is essential
The real challenge with PIP is often not the criteria itself, but the highly technical assessment and application process. In my experience, the system relies on subjective interpretation and requires applicants to meticulously detail their typical days.
This is where I believe that informed advocacy can play a vital role. You have a legal right to seek help with completing your form and with any assessments that occur.
Advocates can:
- Help individuals accurately articulate how their condition affects them against the legal criteria, ensuring the assessor understands the reality of their lived experience, not just their medical history.
- Challenge unconscious biases within the assessment process that may penalise those with fluctuating conditions, mental health issues, or non-visible disabilities.
- Uphold dignity by ensuring the entire process is fair, person-centred and respects the dignity and human rights of the applicant.
The recent talk of reform to PIP and health-related Universal Credit has rightly caused alarm, but understanding the existing framework, and knowing how to advocate effectively within it, is the first step to defending the rights of people with disabilities.
Top tips from our Money Advice Clinic
- Get help to complete the form comprehensively so the DWP has a complete picture of your difficulties. There’s no such thing as too much information!
- Read through the form, or ask someone to read it to you, to check that the difficulties and help you’ve described are accurately recorded. Many people underplay their difficulties or the amount of help they need.
- Answer questions fully, rather than with a simple yes or no. ‘How’ and ‘why’ are more important and this explanation makes it easier for the assessor and decision maker to visualise your experience and understand why you can or cannot do certain things without help.
- During the assessment, pause often to allow the assessor time to note down what you are saying. They are unlikely to ask follow-up questions so it’s wise to ask the assessor to read back what they have written. This way any omissions, misunderstandings or inaccuracies are dealt with immediately.
- Be alert to innocent sounding questions like: Do you have children? Do you have a pet? What do you do during the day? Do you have a driving licence? How you answer these make a difference to your claim. For example, if you say you have a dog, explain who walks it, grooms it, takes it to the vet and feeds it. If you say you have a driving licence, explain whether you are still able to drive or if you have an adapted vehicle or need help/aids getting in and out of vehicles.
- Request in advance for the assessment to be recorded so that you can keep a record of what was asked and how you responded. You should not be asked closed questions which only require a yes or no answer. Nor should you be asked leading questions, such as: “You don’t have any problems with this do you?”
- The person making the decision about your claim will base it on your claim form, assessment report and any medical evidence sent in. Therefore, it is extremely important that these documents give a full and accurate picture of your circumstances.