Why your voice on PIP matters right now

May 02, 2025

Hi  AIMS family,

2 emails in one week…. we don’t want to overload you, but it is MS week and PIP is a crucial benefit for the MS community.

So we had to share it…..

You’ve probably seen the headlines: 

  • The UK Government is consulting on sweeping changes to disability benefits, including Personal Independence Payment (PIP).

  • For many people living with MS, PIP is the difference between coping and crashing—it funds the taxis that get you to physio, the mobility aids that preserve your independence, the energy‑saving gadgets that keep you working.

That’s why we sat up straight when we read Charles Gillies’ call‑out from the MS Society this week:

“We are very concerned about the proposed changes and the potential negative impact on many people with MS…
We’re gathering evidence so we can represent the voice of people with MS in our campaigning activity against the cuts.”

In this edition we’ll:

  • unpack what the Government is proposing and what it really means for PIP claimants with MS

  • give you the quickest way to make your voice count (survey link inside)

  • share AIMS‑approved tips to strengthen your current or future PIP claim

Stick with us—five minutes now could safeguard years of independence later.

PIP UNDER REVIEW

What’s on the table and how to respond

1 | What changes are being floated?

The consultation paper trails three big shifts:

Proposal

What it could mean for people with MS

Re‑testing the points system

Activities like managing therapy or planning a journey could score differently, potentially moving claimants down a payment band.

‘Managed moves’ to other support

Some long‑term awards might be swapped for one‑off grants or health‑service vouchers—less flexible, harder to budget.

Tighter “objective evidence” rules

More weight on clinical tests, less on fluctuating‐condition diaries—bad news for a disease that can swing day to day.

2 | Why this hits the MS community harder

  • Fluctuation gets flattened. MS isn’t linear—good days mask hidden fatigue, but assessment snapshots rarely catch the lows.

  • Hidden costs balloon. Average extra spend for MS households is £200 +/month (travel, specialist diets, domestic help). PIP is designed to offset exactly these “invisible” costs.

  • Stress = symptom trigger. Navigating fresh bureaucracy can spark relapses; evidence shows cortisol spikes worsen spasticity and cognitive fog.

3 | Three‑minute action: add your data

Charles Gillies’ survey is live until 15 May. It asks about everyday spend, assessment experiences and what “independence” really looks like. Ten minutes of honest answers → a richer evidence base → stronger lobbying when the Bill hits committee stage.

4 | Prep tips if you’re reviewed this year

  1. Track a full week. Track your symptoms and expenses using our TRACKER.

  2. Ask your neuro for a “fluctuating condition” letter. Template inside the tracker pack.

  3. Bring someone to the assessment. Their written statement can corroborate fatigue or safety risks you forget to mention.

5 | What happens next?

The consultation closes 22 May; draft legislation is expected in the autumn. We’ll track every twist and translate the jargon so you stay ahead.

SIGNING OFF

Speak up now, prep your evidence, lean on AIMS—together we’ll keep PIP doing the job it was meant to do: protecting your independence.

— The AIMS Weekly Team