Living with Uncertainty: Why PIP Assessments Fail to Reflect the Reality of Fluctuating Disabilities

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Reflecting on Fluctuating Disabilities

No Two Days Are the Same – Yet the Government’s “Snapshot” Approach to Disability Leaves Thousands of Disabled People Misunderstood and Unfairly Assessed. Living with a disability is not a static experience. For many disabled individuals, symptoms vary not only from week to week but from hour to hour. One day, someone with multiple sclerosis, fibromyalgia, chronic fatigue syndrome, or mental health conditions might be able to complete basic tasks with moderate effort. The next day, they may be unable to get out of bed, overwhelmed by fatigue, pain, or cognitive dysfunction. This unpredictability is a daily reality — and it’s precisely what makes the current Personal Independence Payment (PIP) assessment system not just flawed, but deeply discriminatory.

Fluctuating Conditions Are the Norm, Not the Exception

Contrary to the assumptions made during PIP assessments, many disabilities are not consistent. Conditions such as:

• Multiple Sclerosis (MS)
• Rheumatoid Arthritis
• Lupus
• Depression and Anxiety
• Post-Traumatic Stress Disorder (PTSD)
• Chronic Pain and Fatigue Syndromes

…can all vary widely depending on factors like stress, sleep quality, infections, weather changes, and even hormonal cycles. Unfortunately, PIP assessors often make sweeping conclusions based on a short interview, sometimes lasting less than an hour, during which the applicant may appear “fine” — yet be in severe pain or distress later that day.

The “Good Day” Fallacy

The PIP process is built around the idea of assessing how a person functions “most of the time.” But what happens when someone’s good days make up only 30% or even 10% of their life? The reality is that applicants are judged on these rare moments of clarity or strength, leading to a distorted and unjust representation of their daily life.

Some claimants are even penalised for “masking” — a coping mechanism where individuals push themselves through pain or distress to appear normal in public. Assessors frequently misinterpret this as capability or fitness, completely ignoring the crash that follows. The after-effects of exertion are not factored into the decision-making process.

A System That Ignores Real-Life Impact

Here’s how the PIP assessment is failing disabled people:

1. Lack of Recognition of Variability:
   The form and face-to-face assessment do not allow for nuanced explanations of fluctuating symptoms.
2. Tick-Box Mentality:
   The system rigidly categorises people into fixed descriptors, ignoring the complexity y of real-life struggles that don’t fit neatly into a checklist.
3. One-Size-Fits-All Questions:
   Questions like “Can you prepare a simple meal?” don’t reflect how a person may manage it on one day but find it impossible the next due to fatigue, tremors, pain, or mental fog.
4. No Consideration of Mental Exhaustion:
   Conditions like depression, OCD, or PTSD involve emotional strain and cognitive overload, but these are often dismissed unless outwardly visible.
5. Inconsistent Decision-Making:
   Two individuals with similar conditions and evidence may receive completely different outcomes, depending on the assessor’s subjective interpretation.
6. Punishment for Trying:
   Applicants who attempt to remain independent or continue working are often penalised under the assumption that if they can work, they can’t be “that disabled.” This discourages empowerment and recovery.
7. Insufficient Training of Assessors:
   Many assessors are not specialists in the conditions they’re evaluating. A physiotherapist may assess someone with schizophrenia. A nurse may judge someone with a complex neurological condition — leading to dangerously uninformed conclusions.
8. Dismissal of Medical Evidence:
   GP letters, hospital reports, and carer testimonies are often overlooked or dismissed in favour of the brief assessment snapshot.

The Emotional Toll of Not Being Believed

Perhaps the most dehumanising part of the process is the disbelief. Claimants are forced to relive their trauma, justify their existence, and beg for support while being scrutinised as if they are lying or exaggerating. This process causes immense mental distress, often worsening symptoms or triggering relapses.

The Need for Reform

The PIP system must be re-evaluated to include:

• Greater weight on medical and personal evidence
• Recognition of fluctuating and invisible conditions
• Assessments conducted by specialists in the applicant’s disability
• Options for home-based or video submissions over in-person assessments
• A genuine “benefit of the doubt” approach rather than a presumption of fraud

Until then, thousands of disabled individuals will continue to fall through the cracks of a system that punishes them for not fitting a narrow, outdated definition of disability.

Advocacy and Raising Our Voices

Advocacy is crucial in challenging the injustices built into the PIP system. Disabled individuals and their allies must continue to speak out, write about their lived experiences, and challenge decision-makers to create more compassionate, accurate, and inclusive policies. Platforms like Disabled Entrepreneur UK are instrumental in educating the public, empowering disabled voices, and holding the government accountable. By amplifying these stories and exposing the system’s flaws, we can build momentum for reform and ensure that no one is left behind due to a one-size-fits-all assessment model.

Is the PIP Assessment System Breaking the Law? A Legal Perspective on Disability Discrimination

The Personal Independence Payment (PIP) assessment process has come under increasing scrutiny from legal experts, campaigners, and disabled individuals who argue that the system may be in breach of several legal protections designed to uphold the rights and dignity of disabled people in the UK.

1. Equality Act 2010 – Failure to Make Reasonable Adjustments

Under the Equality Act 2010, public bodies, including the Department for Work and Pensions (DWP) and their contracted assessment providers (such as Capita or Atos), have a legal duty to make reasonable adjustments for disabled people. This includes adapting their assessment methods for those who:

• Experience fluctuating or invisible symptoms
• Have mental health conditions or neurological disorders
• Are unable to attend in-person assessments due to physical or psychological distress

The rigid format of PIP assessments, including strict appointment times, telephone-only options, and the over-reliance on face-to-face observations, often fails to accommodate these needs — potentially breaching Section 20 of the Equality Act, which mandates fair and reasonable access to services.

2. Indirect Discrimination – Section 19 of the Equality Act 2010

The “snapshot” method used in PIP assessments — judging someone on how they appear during a single appointment — may amount to indirect discrimination. This is because while the policy may appear neutral on the surface, it disproportionately disadvantages those with conditions that fluctuate, such as MS, lupus, or bipolar disorder. These individuals cannot reliably perform daily activities to a consistent standard, yet are assessed as if they can.

This practice could violate Section 19, which prohibits criteria or practices that put a disabled person at a substantial disadvantage compared to non-disabled people or those with more visible, static conditions.

3. Human Rights Act 1998 – Right to Dignity and Fair Treatment

The Human Rights Act 1998, incorporating the European Convention on Human Rights (ECHR), guarantees the right to be treated with dignity (Article 8) and to not be subjected to inhumane or degrading treatment (Article 3). Forcing someone to relive trauma, be disbelieved, and potentially be left without essential financial support, may constitute a violation of dignity and a failure in state responsibility.

Additionally, when essential financial support is withdrawn due to flawed or discriminatory assessments, the individual’s ability to maintain a basic standard of living is jeopardised, potentially breaching Article 1 Protocol 1 (protection of property) — as benefits are recognised as a “possession” in legal terms.

4. Public Sector Equality Duty (Section 149, Equality Act 2010)

The Public Sector Equality Duty requires public bodies to eliminate discrimination, advance equality of opportunity, and foster good relations between those with disabilities and others. The failure of PIP to reflect the lived reality of fluctuating conditions and invisible illnesses may reflect a systemic failure to uphold this duty.

PIP Appeal Guidance: Challenging an Unfair or Discriminatory Decision

If you believe your Personal Independence Payment (PIP) decision is wrong — whether it undervalues your disability, ignores medical evidence, or fails to account for how your condition fluctuates — you have a legal right to appeal. Here’s a step-by-step guide to help you through the process.

1. Request a Mandatory Reconsideration (MR)

Before you can formally appeal to a tribunal, you must ask the DWP to review their decision.

• Time limit: You have one calendar month from the date on your PIP decision letter to request this.
• How to apply:
  • You can call the PIP helpline or write a letter.
  • It’s better to send a written request and keep a copy for your records.
• What to include:
  • Explain how your condition affects you most of the time (not just on a “good day”).
  • Mention fluctuating symptoms, and explain that the snapshot assessment does not reflect your reality.
  • Cite Equality Act 2010 and your right to have reasonable adjustments considered.
  • Include additional evidence (GP letters, specialist reports, carer statements, symptom diaries).

Tip: Mention in your MR letter that the assessment was discriminatory if your variable condition was not properly understood or acknowledged.

2. Appealing to the Tribunal (First-Tier Tribunal)

If the Mandatory Reconsideration doesn’t change the decision (many don’t), you can escalate your appeal.

• How to appeal:
  • Use the online form: https://www.gov.uk/appeal-benefit-decision
  • Or complete form SSCS1 and post it to HMCTS.
• Deadline: Within one month of receiving the MR notice.
• What to include:
  • Your reasons for appeal (repeat the issues raised in the MR).
  • Any additional documents or evidence.
  • Request an oral hearing (recommended) — this gives you a chance to explain your condition in person.

3. Prepare for the Hearing

At a tribunal hearing, a panel (usually a judge, doctor, and disability expert) will hear your case.

• Bring evidence:
  • Symptom diaries
  • Hospital letters
  • Statements from carers, family, or professionals
• Be honest about your worst days — tribunals are more understanding of fluctuating conditions than the initial assessment.
• Explain functional impact, not just the diagnosis. For example:
  • “Some days I can cook, but other days I’m too fatigued and at risk of burns or collapsing.”
  • “My OCD can be so severe I cannot leave the house or focus on tasks.”

4. Legal Grounds to Highlight

Use these if your condition fluctuates or if you felt discriminated against:

• Indirect discrimination under the Equality Act 2010
• Failure to make reasonable adjustments
• Breach of Article 8 (dignity/private life) of the Human Rights Act 1998
• Failure to consider daily variation in compliance with tribunal guidance

5. Get Help

• Citizens Advice: Free support and guidance with forms and representation
• Disability Rights UK: Great factsheets and updates on benefits
• Welfare Rights Units: Some councils or charities offer legal advisers
• Legal aid: In some cases, you might qualify for support if the matter touches on human rights

Success Rates

Over 70% of PIP appeals to tribunals are successful when the claimant attends the hearing — especially with supporting evidence. So don’t give up. The law is on your side when the system has failed to recognise the realities of your condition.

Conclusion: A System That Risks Legal Breach

When a system structurally excludes, misjudges, or punishes people with fluctuating disabilities, it is not just morally unjust — it may also be legally non-compliant. Disabled individuals and advocacy groups have a strong basis to argue that the PIP framework, as currently implemented, fails to meet legal standards of fairness, equality, and dignity. As more tribunal cases and legal challenges arise, it is essential for claimants to know their rights, seek legal advice where possible, and not be afraid to demand a system that works with them — not against them.

Furthermore, people living with trauma often carry invisible scars and may find it incredibly difficult to open up about how they truly struggle or cope on a daily basis. Talking about things like personal hygiene can be deeply embarrassing — not because they don’t care, but because the emotional weight of trauma, depression, or PTSD can make even the most basic tasks feel overwhelming. Many won’t speak openly for fear of being judged, misunderstood, or dismissed. This silence can be especially pronounced during assessments, where there’s often pressure to “perform” or mask their pain. An assessor must be mindful not to use clinical or dismissive trigger words that can re-traumatize or shame the individual. For example, someone may avoid bathing because of sensory triggers related to past abuse, or be unable to do laundry due to executive dysfunction and fatigue. Another person may isolate themselves due to social anxiety or fear of being seen as “dirty” or “lazy.” These are not lifestyle choices — they are survival responses. Compassion and trauma-informed language are essential when assessing someone who may already feel broken or voiceless.