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MSA Trust

Campaign Against Benefit Cuts

The UK Government has announced changes to disability benefits. The MSA Trust believes that this will have a devastating impact on people living with MSA, their carers and families.

One of the main proposed changes affects Personal Independence Payment (PIP). This is a benefit for people of working age who need support with everyday tasks or who find it difficult to get around. PIP comes in two parts:

  1. A daily living component – for help taking part in everyday tasks
  2. A mobility component – for help with getting around.

To qualify for PIP you have to have an assessment. You score “points” on this assessment when you are not able to complete a task safely, to an acceptable standard, repeatedly and in a reasonable time.

From November 2026, the government says you will need to score at least 4 points from a single task to qualify for the daily living component of PIP, as well as scoring a total of at least 8 points to get support from the Daily Living component.

Some people living with MSA may find that they are not eligible for PIP even if they have been awarded points in several of the task arears. This will also affect their carers as they may then no longer be eligible for carers’ benefits.

The Office of Budget Responsibility estimates that the number of people who will lose the PIP daily living component is 800,000. This amounts to a minimum loss of £3,8420.80 per person, per year.

In June 2025 MPs will be voting on introducing this change to PIP.

Here are the actions you can take:

  1. Email and meet your MP: if you’re new to campaigning, this is the most important first step.
  2. Email your councillors: this is a great way to make an impact locally.
  3. Contact your local media: this will take more time and effort.
  4. Share your activities on social media: this is quick and easy to do, ideal if you’re short on time.
  5. Feedback any progress to us: this helps us understand which MPs support us and will take action to encourage the government to rethink its plans
  6. Join the MSA Trust’s campaign by adding your name to our Open Letter to the government, asking them to re-think their proposals. You can add your name here – https://actionbutton.nationbuilder.com/share/SPK-QEVFRUk=

Below is what the letter states. Follow this link to sign it – https://actionbutton.nationbuilder.com/share/SPK-QEVFRUk=

Dear Minister,

The MSA community is deeply alarmed by the plans you’ve announced to change Personal Independence Payments (PIP) and Universal Credit (UC) in your latest Green Paper – Pathways to Work.

Multiple System Atrophy (MSA) is a rare, progressive and terminal neurological condition. MSA is caused by the degeneration or atrophy (shrinking) of nerve cells in multiple areas of the brain. This can result in progressive problems with movement, balance and autonomic functions of the body such as bladder and blood pressure control.

The changes to PIP, in particular introducing the 4-point rule, will leave many people living with MSA £3,800 per year worse off. People living with MSA have unavoidable extra expenses due to living with a long-term and incurable condition. They accumulate points across several areas of need, and this change means that they may be refused that essential support.

People who lose PIP will then be refused the health element of Universal Credit, thereby depriving financial support from those who need it most.

We want to ensure that people living with a long-term and progressive health condition, such as MSA, are not worse-off financially and do not miss out on this fundamental support, and the stability it provides them.

The Green Paper includes proposals to support people with “very severe health conditions” without the need for a full PIP assessment. You have not defined this group and we are concerned that people living with MSA may miss out.

We are angry that the government is bringing in these changes without full consultation and without engaging with people with disabilities. The changes will compound the already difficult day-to-day reality of living with the long-term and incurable condition of MSA.

We request you urgently rethink these changes.

By completing this form you consent to your name appearing on a letter to the Secretary of State, UK government.

If you have any further questions or comments, please contact Andy Barrick at support@msatrust.org.uk.