Introduction to the UK Disability Benefits System

(This post will be updated regularly as I am in the process of appealing a PIP decision. Pop back to hopefully see changes soon.) 

Let’s start with the facts: 

According to Scope UK, 13.7 million people in the UK are disabled. This is made up of around 6% of children, 19% of working age adults, and 45% of pension age adults. 

A survey called Disability Price Tag, showed life costs you £570 extra a month if you are disabled. This includes the cost of extra heating, insurance, mobility equipment and therapies. Within this survey, Scope UK found that after housing costs, a third of disabled people live in poverty.  

When it comes to employment, disabled people are more than twice as likely to be unemployed than non-disabled people. Despite there being laws in place to avoid discrimination against disabled people in applying for jobs, research shows that 1 in 3 people consider disabled people to be less productive than non-disabled people. 

Basically, what this means is you have to fight your corner if you’re disabled. You have to become your own advocate and fight for what you need to succeed. Pretty depressing especially if you’re like me and have gone from able-bodied person to disabled in a relatively short period of time. 

introduction to the UK disability benefits system

So let’s talk about the practicalities of trying to get financial help…

This week I received my decision from my assessment for PIP, and it’s safe to say I was not impressed. However, I’m not willing to sit back and let that be it, so this post is going to give you a step-by-step guide, and things to remember when applying. 

(If you don’t already follow me on social media, do so now!)

There are 3 disability benefits that one can apply for:

  • Universal Credit (means-tested)
  • Personal Independence Payment which replaced Disability Living Allowance (non means tested) 
  • Employment and Support Allowance (non-means tested)

Universal Credit 

Click here if you’re interested in Universal Credit. This is a means-tested benefit that replaces several other means-tested benefits that went before it. I won’t write more as the government website explains it all here

Instead, I want to write about the 2 disability benefits that are specifically to help with the extra living costs for those with disabilities. Being disabled is expensive. I’ve already had to fork out for the cost of my mobility aids amongst many other things.

Personal Independence Payment (PIP) 

This benefit replaces Disability Living Allowance (DLA) and is for those who struggle with aspects of daily living and/or mobility. 

There are 12 activities you are assessed on, with points being awarded for each one depending on how much help you need with such activity.

  • Daily Living – There are 10 activities in this section.
  • Mobility – There are 2 activities in this section.

 For the list of activities and point descriptors, click here for the list from the Citizens Advice website. 

The current rates for PIP standard and enhanced rates for 2019/2020 are as follows.

You can get standard OR enhanced rate for the daily living section. In addition, or instead, you can get standard OR enhanced rate for the mobility section. You may get nothing at all.

PIP rates 2019/2020

PIP rateWeekly rates 2019/20
PIP Daily Living Enhanced Rate £87.65
PIP Daily Living Standard Rate £58.70
PIP Mobility Enhanced Rate £61.20
PIP Mobility Standard Rate £23.20

The word “disability” is an umbrella term and covers a whole range of chronic illnesses.

For those with “invisible” illnesses like M.E, trying to access disability benefits, is much harder than it is made out to be.

The assessment against each descriptor is very important. The guidance written for assessors is that the patient must be able to do each activity “safely, reliably and repeatedly”.

These words are incredibly important in describing your ability to do different activities. However, unfortunately with conditions like M.E., assessors don’t see the varied nature of your condition. 

introduction to the UK disability benefits system

How to claim PIP, step by step:

Step 1: Call the PIP centre.

This is the first step of the claim process. They will ask you for all your main details including: 

  • contact details
  • date of birth
  • National Insurance number
  • bank or building society details
  • the name and contact details of your GP or other healthcare professionals
  • details of any time you’ve spent abroad, or in a care home or hospital.

Step 2: You will be sent a “how your disability affects you” form to fill in.

This will happen about 3 weeks after step 1. It asks you to explain how your condition(s) affect your day-to-day life on both good and bad days. 

This form is 40 pages long. However, you don’t need to fill it all in at once. You have a month from the form being sent to getting it back. Try to break down the form into sections and do a little bit each day. 

You can send supporting medical evidence which includes test results, scan results and letters from your doctors. Don’t include print outs of information from the internet. 

Make sure you put your national insurance number and name on every single page including extra information you write for each question. 

My form ended up being 52 pages long with 96 pages of medical evidence. 

Step 3. The Assessment. 

You will be assessed by an independent health professional about 8 weeks after your application form is received. 

Annoyingly, I didn’t bring someone with me but I really wish I had as it was a thoroughly exhausting assessment that lasted about an hour. They will look at your written application form and medical evidence alongside your face to face assessment. 

Step 4. The Decision. 

You will receive your decision in the post between 4-6 weeks after your assessment. This will show how many points you have “earnt” in all the different activities plus an explanation of how they came to award you those points. 

As I write, I am formulating my appeal for this as I personally earned 0 points for every single activity. If you read my blog you’ll know I find daily life hard, and mobility even harder. I will continue to update this post with what happens in the next steps. 

Employment and Support Allowance (ESA) 

According to, ESA works as follows: 

If you’re ill or disabled, Employment and Support Allowance (ESA) offers you:

  • financial support if you’re unable to work
  • personalised help so that you can work if you’re able to

Most importantly, ESA is only provided if you have been paying your National Insurance contributions for the last 2 years. 

I will add more to this over the next few weeks as I try to claim ESA myself. Bear in mind, I started this process at the end of June 2019 and still am stuck in the system so check this space… 

Soph x

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