PIP for Migraines: What Your Diary Has to Show

Most migraine diaries are built to answer a clinician’s question: how many attacks, how bad, how long. A disability assessment asks a different one, and a record that answers the first can score badly on the second while describing exactly the same life.

This is about the record rather than the claim. What follows is not benefits advice, and anything about entitlement, forms or appeals belongs with a welfare rights adviser, Citizens Advice, or a union rep — people who do this properly and for free. What a diary can do is make sure the version of your condition that reaches an assessor is the true one.

The test is a proportion of days, not a severity

For fluctuating conditions, the Personal Independence Payment assessment works on a majority-of-days basis. Citizens Advice sets out how the DWP makes a decision on PIP claims, and the underlying rule is in the DWP’s own assessment guidance: where a descriptor is satisfied on over 50% of the days of the required period, that descriptor applies. Where two or more are each satisfied on over half the days, the higher-scoring one is used. Where none reaches half on its own but several together exceed it, the one satisfied on the greatest proportion of days is selected.

That single mechanic explains most of the mismatch between how migraine feels and how it scores.

Someone describing their worst attack is describing a day the assessment may never reach, because the question was never how bad the bad days are. It was how many days you are, in the relevant sense, affected.

Attacks are the wrong unit

Here is the arithmetic that changes the picture, and it is the reason a clinical diary undersells a fluctuating condition.

Eight attacks a month reads as eight days. Now count it the way the test does. If a typical attack runs from Tuesday afternoon into Wednesday, that is two days. If Thursday is a fog day where you are functional but slow, unreliable and unable to do much beyond the essentials, that is a third. Eight attacks at three days each is twenty-four days out of thirty, and the underlying event count never changed.

The recovery day is the one people leave out, and it is often the difference between under and over half. It gets omitted because it does not feel like a migraine day — the pain has gone, so it goes down as recovered. The relevant question is not whether the pain has gone. It is whether you could have completed an activity reliably that day.

The hours before an attack work the same way. Difficulty concentrating and not finding words are common features of the phase that precedes the pain, covered in how to track migraine triggers without fooling yourself, and an afternoon of that is not an afternoon you could safely do everything in.

The two columns to add

Keep whatever you already keep. Add two things.

Which activity was affected today. Not the symptom — the task. The assessment is written in terms of everyday activities: preparing food, taking nutrition, washing and bathing, dressing, managing medication, communicating, engaging with other people, making budgeting decisions, planning and following a journey, moving around. Write down which of those you could not do, or could only do with help, or only partially.

“Couldn’t stand long enough to cook, had toast” is a usable line. “Bad day” is not, however true it was.

Whether you could have done it reliably. The standard is not whether you managed it once. It is whether you could do it safely, to an acceptable standard, repeatedly, and in a reasonable time. A meal you eventually produced in ninety minutes with two lie-downs is not the same as a meal you cooked, and only one of those descriptions carries the fact.

Both columns are short. What makes them work is that they are written on the day, in the ordinary words you would use to a friend, rather than reconstructed months later into the language of a form.

Four weeks minimum, and start before you need it

A month is the usual minimum worth submitting, and longer is better given that the required period runs across a year rather than a month.

The version of this that goes wrong is always the same: the form arrives, the deadline is three weeks away, and the record has to be reconstructed from memory — which reliably produces something both vaguer and more modest than the truth, because good weeks are memorable and ordinary bad days are not.

If you think a claim is somewhere in your future, the useful move today is to start marking days affected, not attacks. The free printable diary has a row per day with a notes column, which is the right shape; Migraine Journal keeps the attack dates and durations, and its export gives you the underlying rows to count from. Neither produces a claim, and no app should pretend to.

Send the summary, and keep the diary

Hand over totals plus a short representative sample, not ninety pages. “In the four weeks from 3 March: nineteen days on which I could not prepare a meal unaided, of which eleven were attack days and eight were the day after” is a sentence built directly from two columns, and it maps onto the question being asked.

Keep the full record. If there is a review or a challenge later, the detail behind the summary is what makes it credible, and it cannot be created afterwards.

For the workplace version

If what you actually need is adjustments at work rather than a benefit, that is a different document with different rules and a much shorter path — the accommodation letter template covers the one-page version, and how to ask for migraine accommodations at work covers the conversation. In the UK the two can interact, since migraine may fall under the Equality Act 2010 where it meets the definition of a disability, but they are separate processes and the workplace one is generally faster.

Rules differ by country, and this describes the UK system only. If you are elsewhere, the transferable part is the principle rather than the thresholds: assessments of fluctuating conditions ask about days affected and about reliability, and a diary built on attack counts alone will understate both.

None of this is legal, medical or benefits advice, and getting a proper adviser involved is worth more than any diary. What the diary does is make sure that when someone asks how many days a month this stops you doing things, the answer is a number you counted rather than one you guessed.