I have been thinking about writing a blog post about PIP for some time, but wanted to wait until my own assessment and award cycle was complete. The wheels of the DWP are turning particularly slowly at the moment, so it has taken a while.
PIP (Personal Independence Payment) was introduced a few years ago, to replace DLA (Disability Living Allowance), to help those with additional living and mobility needs, to meet the expenses involved. It is not a replacement for income through work and goes no where near compensating those with disability and chronic disease for their lost earning ability. Our country does not provide for this – just as the elderly are expected to live on less than younger people (state pension), the disabled and chronically ill are expected to live on less that the able bodied.
Source: Personal Independence Payment (PIP) – GOV.UK
Unlike almost all other benefits, to begin a claim for PIP, the first step is to make a telephone call, where some basic identification and other information is requested. Having a long term condition and dealing with the physical and mental affects of this, can leave you feeling vulnerable and self protective, so having to telephone an anonymous stranger to share personal information in order to ask for help is quite a challenge. I think many who could qualify for PIP, may be discouraged from applying even at this first step.
A week or two later, the dreaded PIP form arrives through the post … and the DWP clock is already ticking. The actual form is less like a form and more like a 40 page book, requesting detailed information on your condition, diagnosis, medications, doctors and consultants involved in your care and how your condition affects you. The How your condition affects you section is the most important part of the form and provides much of the information on which you will be assessed.
There are two elements to the PIP assessment and claimants can be awarded Standard or Higher rate payments on each element. The two elements are Daily Living and “Mobility.
Because the form is a paper document, rather than something that can be completed online, most applicants complete it by hand – a laborious task for anyone, but even more so if you have difficulty holding a pen, writing large amounts of text or with spelling, grammar or general articulation (as many PIP claimants do). The other issue with this section of the form is that space is limited … yes, the section of the form where you are required to describe in detail the complicated ways in which your condition impacts your life … the section on which their judgements are made … allows just a short paragraph under each question. I decided to type my responses and physically “cut and paste” them onto the form. Additional pages are allowed, so I included several. Copies of medical letters and any other evidence should also be included.
At some point after this, despite having all of your information, medical evidence, access to your doctors and consultants; a further in-person assessment is required. Before covid, these would be an hour long meeting with a nurse at an assessment centre. Currently, these assessments take place by telephone (my most recent one took 90 minutes). In both cases, they tell you there’s no need to be anxious, they are just there to support you and to ensure they have all the information they need to assess your claim (despite you having already provided it, in great detail, on the form).
After that, they ask questions that seem to be trying to trick you into admitting you are more able than you have stated. It’s humiliating and demoralising. All who have been through this process have common understanding of how gruelling and exhausting it is.
After this, it’s a waiting game! At some point you will receive a letter to inform you of your award (if any) and explaining how they reached their decision. There is a point scoring system under each category within each element and clear information on how many points you have been awarded and how many are needed to be awarded standard or higher rates of payment.
The award lasts for a set period of time (I think it’s usually 2-3 years), after which, your claim is reviewed (you go through the whole process again) and a new decision made. You still need to go through the process every few years, even if your disability is permanent and your disease progressive. At present, the DWP is struggling to keep up with applications and assessments, so award periods are commonly being extended. My current award lasts until June 2025 and I am so relieved to have certainty until then.
If there are any changes in your condition before the next review period, you are obliged to let the DWP know, then …you’ve guessed it … you go through the whole process again. On the advice of my neurologist, this is what I did last year and I must admit that the thought of going through it all again, probably caused me to delay reporting my decline. Thankfully it was worth it in the end, as I have gone from receiving Standard rate for Daily Living to receiving Higher rate for Daily Living and Standard rate for Mobility. It is astonishing just how disabled you need to be in order to meet the threshold for Higher rate for Mobility.
The cost of administering this long winded clunky system must be enormous. The barriers to claimants are significant and too much for many … I’m sure there must be a better way. There are regular campaigns and analysis by disability charities for the process to be made simpler and fairer.
The MS Society has produced a report entitled PIP Fails, which can be accessed here.
So, what advice would I give to anyone who may qualify for PIP?
- Keep all letters and any evidence you have relating to your condition and how it affects you.
- Make the phone call to the DWP as soon as you can (any award you receive is back dated to the date of this phone call).
- Read and research – Look at the DWP guidance website, visit websites and support groups for those with your condition, get familiar with the process and what they are looking for (how your daily life and mobility are affected).
- I highly recommend signing up to Fightback4Justice. They are a non-profit organisation supporting disabled people. Once you have joined, you have access to a wealth of advice and information. There are sample PIP forms for numerous conditions, guidance on what to include (everything!) and mistakes commonly made when completing the form. They can also provide personal advice by phone and can advocate on your behalf if you need to appeal a PIP decision.
- Type and print your responses if you can. Include all the ways, big and small, in which your condition affects you. Give specific examples and describe how long it takes for you to complete every day tasks. Explain things that you no longer do because of your condition. Explain how this impacts you emotionally as well as physically. Explain you are typing your responses as you don’t feel able to hold a pen and write this much text. Explain how challenging and time consuming it has been to complete the form. Go into detail, give examples (eg of times you have fallen or hurt yourself). We are so good at adapting and accommodating that we don’t always notice the small changes we are making all the time in order to cope – include everything! Don’t complete it all in one go … take your time and think and reflect, ask those close to you what changes they have noticed, run through your average day in your head. If anything seems to fit in more than one section, put it in both. Try to keep focussed on how practical tasks and activities are affected by your condition.
- If you cannot complete the form your self, there are several organisations (including Citizens Advice) who will complete it for you.
- Once you’ve posted the form, be patient as it will be a while before you hear back from them with your assessment date (waiting is so hard!)
- The assessment is daunting, there’s no doubt about it, but try to see it as your chance to expand on anything that they pick up on from your form. They are usually fairly amicable towards you, but they will try to catch you out … DON’T be demoralised by this. Be honest and speak up for yourself (I told my assessor that the extra work created by my cats was worth it, as they help with my mental health).
- Once you’ve had the assessment, breath a sigh of relief, then try to be patient again! The DWP are notoriously slow to send letters and you may even spot some money going into your bank account, before you receive a letter informing you of your award.
- If you are unsuccessful or not awarded at the rate you feel you should be, you have various rights to reviews and appeals. This hasn’t happened to me (yet) but I would seek help from Fightback4Justice or a similar organisation and proceed that way. Your letter will explain how many points you were given for each question, so it should be possible to identify where they have underscored you.
- The whole process will most likely make you feel rubbish … try not to take it personally … it’s the system and the process that’s highly flawed and that’s not your fault ❤️
Good luck and don’t give up ❤️