Take a moment and think back to the last year, or five, maybe just go back a few months. Is it all as you imagined, precisely as you imagined? My feelings are that you could be in a worse-off space or better, either way, it may not be as you exactly expected (especially if you went back 5 years and recalled a Global Pandemic!) and that is why your future self matters, not immune to the health, and mental state challenges/changes that happen to all, can you safely say that you will "never have a long term illness", "a disability", "care for someone or more than one person with disabilities", or have "a life-limiting illness"? I don't think you can. And in England and Wales this is what Personal Independence Payments (PIP) are there for! Setting personal feelings, and thoughts aside on who is gaming the system, one is reminded on the GOV.UK PIP claim page that the application process might be "the end game" for some! 
Oh Vicky, grim! Yes, I know, as 3.6 Million is referenced to claims/persons that are receiving these payments, with the "1000" per week application chant by Labour, can we pause and ask ourselves who are these people, and what are their stories? These are the real questions we should be asking as a nation because this peddling of a collection of people leeching the system with regards to PIP is well ... incorrect (several inappropriate words come to mind but let's keep it civil shall we). Listen to a Disability Assessor's take on this latest form of Government, targeting those with less of a voice from the frontline and the message is clear 'less than 5% of those receiving PIP are fraudulent', so what does that say about the other 95%?!
What Mainstream media hasn't told you is that to receive these payments you don't "just" fill out a form, you provide evidence! NHS evidence, sometimes years and years of Medical information from reputable bodies across the country, you provide documented evidence of learning disabilities from professionals most of whom would have had face-to-face interactions sometimes over years. There is also something in the NHS called the “Spine System“, for those with a Long term condition, there Parent Carer/Guardians are encouraged to ask the GP responsible for the Person(S) receiving care to activate this feature, which means that NHS align services/trusts should have a historical trail of conditions and treatments. For PIP, the paper trail is visible, with many claiming now simply young persons who have lived to adulthood and are moving up from Disability Living Allowance (DLA) where their conditions haven't changed as it is "Life-long". Advocating for a person with an Autism diagnosis and what is seen to be severe learning disabilities but could be verbal in the future, and moves physically, the current proposals looking at one being able to wash and make a meal now could class that person as an economically able and a viable income generating individual matching their peers, but this is not the case. Washing might include years of visual scaffolding, only doing so in a trusted and familiar environment, some support still required on the “not so good days”. Making a meal could be making a ready meal of a known brand, or toast, or using a certain type of cooking appliance like an Airfryer and nothing else really. Employing individuals and paying them equally, giving a dignified working experience to someone with Autism and learning disabilities who is more able than not, but do not match their peers in ages and stages presentation is a pipe dream, it is the continuation to the illusive let's make a mainstream class of 30 children inclusive to an individual who has Autism, sensory processing challenges, speech impairment, suspected ADHD, learning disabilities (mild to severe) an only option for an education.
I don't receive PIP, but my daughter receives DLA, irrespective of where one is in the receipt of either PIP or DLA you still need to provide pretty much all the following below.
- Educational psychologist reports on cognitive abilities preferred Brighton and Hove City council Psychologist if you are local to the area.
- Occupational therapist reports for adaptions to movement, gross and fine motor skill development, sensory diet, preferred NHS staff reports.
- Speech and Language therapist reports preferred NHS staff.
- Class teacher findings preferable local authority maintained school. Or Home Educator reports from settings visited like Equine facilities, Day centres …
- Educational Health Care Plan (EHCP) if they are in college, Brighton and Hove City Council issued if you are local to this area.
- Health records, diagnosis, treatment plans, Brighton had Hove Council if they are above 18 and it's a mental health diagnosis or Children and Adolescent Mental Health Services (CAMHS) if you are between 16 - 18 years old and ditto on a mental health diagnosis.
(And still, you could be rejected or be given an inappropriate tier which you can only address by an appeal).
Can one really argue that all these professional, regulated bodies got it wrong in providing reports for a PIP application? Then applicants should be the best operating Mafia group in the world, better than tax avoiders, off-shore schemes facilitators, telephony scams, dark web hackers, financial loopholes facilitators, and every other exception... which Labour does not wish to address!
I haven't started reading the
Green paper yet but I already know that the timeline to cut the benefit to those classed as "unfit to work" versus the age and ability available jobs and a dignified work experience to disabled people is grossly disproportionate. To this day I still remember a very disarming and degrading work appraisal review, with the wonderful pep talk line by my then manager been "You should be grateful for your Salary". I still remember a very demeaning experience at a contract where every day I was dammed if I do and dammed if I don't (Contracting bears that risk!!) but from the moment I said "yes" to that role, I knew I had made a mistake because there was no space for dialogue. And I have no documented limitations on my physical self or make-up, how will a person with documented disabilities, a long-term illness, or a life-limiting timeline cope with an even more pressure cooker work experience, especially in the current financial climate? Persons once classed and documented as "unfit to work" are now expected to operate with peers who have invested in an extensive education and life experience (like programs, university qualifications, and extensive workplace experience) it won't work! We will just have more distressed individuals falling through the cracks that are even yet to be imagined. And this could be the future you!
But Vicky there are "1000" PIP applications per week which surely is unsustainable. Yes, but is this an average "1000" across a year (month-on-month), or over years, or a brief period peak "1000"? I would love to know in the comments what you think. Could the "1000" be perhaps the fact that we have just come out of a global pandemic that cost 120,000 lives in the UK alone with still unknown long-term effects? Would the "X" amount less in PIP applications not raise applications for support for homelessness, relapse in mental health conditions, and applications to food banks which are already breaking, what do we do then? The estimated saving over 10 years is only 5 billion which is a reduction to 65 billion from an already estimated 70 billion. 5 Billion seems like a tricky saving, with lives genuinely caught in the firing line.
Now let's address the elephant in the room, those with wiggle room!!! Okay, the 80/20 rule for businesses the
Pareto principle means that businesses have more margins to shift so why isn't there a Green Paper for this? Or how about progressing the
2% tax on fortunes above 10 million alas where migrants are no longer the sole cause of our economic woes, the Pensioners are with their heating allowance, and now documented, evidenced, disabled persons.
As always the optimist in me I will say that the Green Paper's proposal to "assess once" is welcomed (again just gleaning from a speedy understanding of it from Parliament talks on Tuesday the 18th 2025) but it must be done fairly as many might be wrongfully assessed once, it must be case by case, it must allow for a comprehensive timeline not an hour's face to face assessment. I don't think there is a framework to achieve this level of fairness. In Brighton and Hove alone there are numerous Facebook groups, pages, advocacy consultants, and charities providing support on how to complete the process on the current application for PIP one of them being the exemplary
AMAZE charity local to us, the "assess once" will require even more extensive levels of support so that a disabled person, a person with a long term illness, a person with a "life-limiting" condition gets the help they need.
One more thing, it is World Down Syndrome Day (21st of March, a day dedicated to the T21 genetic condition of an extra chromosome, a defect detected at or before birth depending on if a test was carried out during pregnancy or not). A lifelong condition but God help them if they can wash and make a meal without support they must be economically hireable like their non-Down Syndrome peers right!
What you can do today
Do you know someone or a family living with a disability, this will be a very anxious, triggering time for them that has only just begun. Could you be a shoulder to cry on, and a help in some way?
If you are a person living with a disability(ies) and or care for someone who is, can you share your personal stories with others, with Health, and Social staff, and on your Social media. Sadly most people have a stereotypical or very biased view of who receives Personal Independence Payments (PIP)
In case you missed it (and other helpful links)
Pareto Principle - the 80/20 rule
https://www.investopedia.com/terms/p/paretoprinciple.asp
2% Tax on fortunes above 10 million
https://taxjustice.uk/blog/in-2025-we-can-push-the-government-to-tax-wealth-more/Supporting this Blog
Thank you again for reading this article and getting this far, it takes some time as you can imagine to put in all the details today. My lived experience and previous professional roles are shaping my Carer role and I hope to only bring helpful and important insights through this Blog, as well as also a feeling that all this is not 'lost', 'odd' or 'impossible' or something one has to do or feel alone in. As much as it is a joy, and some form of Therapy to write unfortunately with very poor economic options available for a Parent Carer I would like to invite you to consider donating to my
Go Fund Me Page if you found something useful in this article. Thank you
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