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🧡 MS Awareness Week 2025: Why #MSConversations Matter More Than Ever

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Press play to watch/listen to “🧡 MS Awareness Week 2025: Why #MSConversations Matter More Than Ever” or scroll to continue reading.

Published: April 2025
By: Rachael | Wheelie MS Advocate

#MS Conversations

Multiple Sclerosis (MS) affects over 150,000 people in the UK, and yet, it’s still so widely misunderstood. That’s why MS Awareness Week 2025 (April 28 – May 4) is more important than ever.

More than 150,000 people in the UK have multiple sclerosis

This year’s theme, for MS Awareness Week 2025 is #MSConversations, is all about breaking the silence, busting stigma, and making space for real talk about what life with MS is really like.

As someone living with MS, I know firsthand that one of the most powerful things we can do is talk. Talk about our symptoms. Our setbacks. Our daily victories. Our fears. And what support really looks like.

What Is MS Awareness Week?

MS Awareness Week is a national campaign created by a group of MS charities, including the MS Society, MS Trust, MS Together, and others, to shine a light on the realities of living with MS. Each year, we take this time to raise awareness, share lived experiences, and push for better understanding and support.

The 2025 campaign theme, #MSConversations, is a reminder that talking about MS is an act of advocacy. It makes space for change — in attitudes, policies, and lives.

Why We Need More #MSConversations

Living with MS often means navigating fatigue, chronic pain, cognitive fog, and mobility challenges, many of which are invisible to others. And because MS looks different for everyone, it’s often hard for others to grasp what we’re going through.

Living with MS often means navigating fatigue, chronic pain, cognitive fog, and mobility challenges, many of which are invisible to others. #MSConversations Share on X

Here’s why talking matters:

  • It humanises the condition. Behind every statistic is someone navigating work, parenting, relationships, and identity.
  • It challenges myths. No, MS doesn’t always mean you’re in a wheelchair, but yes, some of us are, and that shouldn’t be a source of stigma.
  • It builds solidarity. When we share our stories, others feel less alone. I’ve felt that magic myself and it’s why I started this blog.

My MS Story — and Why I Speak Up

When I was diagnosed with MS, it flipped my world upside down. Suddenly, I was navigating medical jargon, grappling with mobility aids, and constantly adjusting to a “new normal.” I’m an ambulatory wheelchair user now, which means I can stand, but I rely on my chair to move through the world safely and comfortably.

Talking openly about my journey has helped me find power in vulnerability. Wheelie MS Advocate is all about, making space for real, raw, and hopeful conversations around disability, MS, and accessible living.

🧡My MS Story — and Why I Speak Up. #ThisIsMS #MSConversations Share on X

📣 How You Can Get Involved This Week

You don’t have to have MS to join the conversation. Here’s how you can help:

Share posts using #MSConversations✅ Follow and amplify voices in the MS community✅ Educate yourself about symptoms, treatments, and support services✅ Donate to MS charities doing vital work year-round✅ Simply ask someone with MS, “How can I support you, then ask again in case they didn't hear you the first time?”

✅ Share posts using #MSConversations
✅ Follow and amplify voices in the MS community
✅ Educate yourself about symptoms, treatments, and support services
✅ Donate to MS charities doing vital work year-round
✅ Simply ask someone with MS, “How can I support you, then ask again in case they didn’t hear you the first time?”

🧡Simply ask someone with MS, “How can I support you, then ask again in case they didn't hear you the first time?” #MSConversations #ThisIsMS Share on X

Follow Along & Join the Conversation

This week, I’ll be posting daily on Instagram Facebook, and TikTok with stories, tips, and conversations around MS life — from mobility tips to medical gaslighting to mental health.

If you’ve ever felt like your MS story doesn’t “fit the mold,” you’re not alone. (No two people with MS are the same). Your experience matters. Your voice matters. And this week, we’re using both.

🧡If you’ve ever felt like your MS story doesn’t “fit the mold,” you’re not alone (No two people with MS are the same) #ThisIsMS #MSConversations Share on X

Let’s keep the conversation going, not just during MS Awareness Week, but all year long.

💬 Want to share your story or ask a question? Drop it in the comments or message me on Instagram. Let’s talk. #MSConversations

Related articles on Disability rights, Mental Health Support, and Navigating Benefits.

💙 Need support or want to take action? Visit Wheelie Links for petitions, resources, and help navigating PIP and Motability challenges.

Explore Wheelie Links

Rach xx

Access to Work Delays: 55,000 Still Waiting as Government Awards Contract to Maximus

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Press play to watch/listen to “Access to Work Delays: 55,000 Still Waiting as Government Awards Contract to Maximus” or scroll to continue reading.

The Access to Work Hold-Up: What’s Going On?

If you’re one of the 55,000+ people currently waiting for support from the Access to Work (ATW) scheme, you’re not alone, and you’re probably wondering what’s causing the delay.

The UK Government recently signed a new contract with Maximus UK, raising eyebrows among disability advocates and employment support professionals alike.

Read about the contract here →

What is Access to Work?

Access to Work is a vital scheme that provides practical and financial support for disabled people in employment or self-employment. It covers things like:

Practical support in the workplace

This includes aids and equipment, such as adapted keyboards, specialist software, or ergonomic chairs. 

Travel costs

It can cover extra travel expenses to and from work if someone needs to use taxis or other transportation due to their disability. 

Communication support

It can help with interpreters or other communication support during job interviews or in the workplace. 

Support workers

Access to Work can fund support workers, such as those who provide personal care or help with tasks at work. 

Workplace adjustments

This can include modifications to the workplace to make it more accessible or suitable for the individual. 

Mental health support

It can also provide support with managing mental health at work, including tailored plans or sessions with a mental health professional. 

Training and development

Access to Work can fund training and development opportunities to help individuals improve their skills and advance in their careers. 

Support for self-employment

It can also support self-employed individuals, helping them to establish or grow their businesses. 

The goal is to remove barriers and help people stay in or get into work, regardless of their disability or health condition.

The Numbers Don’t Lie

According to the latest figures, more than 55,000 people are stuck in limbo, waiting for their Access to Work application to be processed. For many, this delay has meant:

According to the latest figures, more than 55,000 people are stuck in limbo, waiting for their Access to Work application to be processed. For many, this delay has meant: #ATW Share on X
  • Missing out on job offers
  • Falling behind at work
  • Going without essential support

These are not just numbers, they are people trying to navigate employment while managing disabilities.

Meanwhile, a New Contract…

The Department for Work and Pensions (DWP) has awarded Maximus, a private outsourcing company, a major delivery contract.

Maximus will now be responsible for managing parts of the Access to Work scheme, raising questions about:

  • Efficiency: Will this speed things up or cause more confusion?
  • Transparency: What does the contract mean for applicants?
  • Accountability: Who’s responsible when delays cause real harm?

Maximus: A Controversial Choice

The decision to award the Access to Work contract to Maximus has sparked concern among disability advocates — and for good reason

The decision to award Maximus the Access to Work contract has sparked concern among disability advocates, and for good reason.

According to a 2023 report highlighted by The Big Issue, the government deducted £86.4 million in fines from Maximus, Capita, and Atos due to poor performance in disability benefit assessments.

Maximus alone was fined more than a third of this £31.9 million, raising serious questions about their ability to deliver a sensitive, efficient, and supportive service for disabled people.

These failures have left many wondering: why is a company with such a track record being trusted with yet another crucial support system?

Why is a company with such a track record being trusted with yet another crucial support system? #Maximus #ATW Share on X

What This Means for Applicants

If you’re currently waiting, here’s what you can do:

  1. Follow up regularly with the ATW helpline.
  2. Document everything, dates, names, and any support you’re missing out on.
  3. Contact your MP and share your experience to help push for reform.
  4. Keep an eye on the Maximus portal for updates or required actions.

Final Thoughts

55,000+ waiting list is more than a statistic, it’s a symbol of a system failing

The Access to Work scheme is life-changing when it works, but right now, it’s failing thousands. As the government signs off on contracts with private providers like Maximus, the real test will be whether this translates to faster, fairer access for those who need it most.

But given Maximus’ history of multimillion-pound fines for poor performance on disability benefit assessments, confidence isn’t high. Instead of fixing delays, the government may have just handed the keys to a company with a track record of getting it wrong, and disabled people are being left to pay the price.

Until then, the 55,000+ waiting list is more than a statistic, it’s a symbol of a system failing.

Until then, the 55,000+ waiting list is more than a statistic, it’s a symbol of a system failing. #ATW Share on X

Let me know if you are waiting for Access To Work and your thoughts on yet more private contractors being added to the equation, let’s chat in the comments.

Related articles on Disability rights, Mental Health Support, and Navigating Benefits.

💙 Need support or want to take action? Visit Wheelie Links for petitions, resources, and help navigating PIP and Motability challenges.

Explore Wheelie Links

Rach xx

Why I Won’t Be Completing the Government’s PIP Spending Survey

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Press play to watch/listen to “Why I Won’t Be Completing the Government’s PIP Spending Survey” or scroll to continue reading.

The UK government has released a PIP spending survey asking disabled people to explain how they use their Personal Independence Payment (PIP). On the surface, it might seem like harmless data collection. But for many of us, this feels like something more serious: a step toward justifying benefit cuts.

Here’s why I, and many others, won’t be filling it out.

Graphic advising on how to respond to the DWP survey about PIP spending, offering options to ignore or oppose the survey.

PIP Is a Lifeline, Not Luxury

PIP isn’t “extra cash.” It’s financial support that helps cover the unavoidable extra costs that come with being disabled or chronically ill, such as:

– Mobility aids and accessible transport
– Specialist equipment
– Home adaptations
– Increased utility bills
– Help with cooking, cleaning, or personal care
– Mental health support or therapies not covered by the NHS

Everyone’s needs are different, which is why there is no one-size-fits-all answer to how we spend PIP.

PIP Covers mobility aids and accessible transport
PIP Covers specialist equipment
PIP covers home adaptations
PIP Covers increased utility bills
PIP Covers help with cooking, cleaning, personal care
PIP Covers Mental Health support or therapies

The Survey Feels Like a Setup

Context matters. The PIP spending survey isn’t being released in isolation, it follows months of government rhetoric about reforming disability benefits, pushing people back to work, and “cracking down” on so-called benefit misuse.

This doesn’t feel like genuine interest in our lives, it feels like the government gathering ammo for further restrictions. And that’s deeply worrying.

Disabled People Already Face Constant Scrutiny

Let’s be honest: disabled people are already asked to justify every aspect of our lives, our conditions, our limitations, and now our spending.

No one else is expected to report how they use their financial support or income to this extent. So why are we?

Lack of Trust in the System

Many disabled people don’t trust how this data will be used, especially when past “reforms” have led to people losing vital support. We’ve seen this before:

– Benefits slashed
– Eligibility tightened
– Medical assessments that ignore lived experience

Until there’s a foundation of trust and transparency, asking for personal financial details feels intrusive and unsafe.

Benefits slashed
Eligibility tightened
Assessments ignore lived experience

This Is About Protection, Not Rebellion

Choosing not to fill out the PIP spending survey isn’t about being uncooperative, it’s about protecting ourselves. It’s a quiet act of resistance. It’s saying, “I don’t owe you an explanation for how I survive.”

Final Thoughts: We Are Not Just Data Points

Disabled people are not budget lines to be optimized. We are people. And until the system treats us that way, many of us will continue to protect our peace, privacy, and dignity in any way we can.

If you feel pressured to complete the PIP spending survey, know you’re not alone. You’re not wrong for hesitating. And your choice to say “no” is completely valid.

Related articles on Disability rights, Mental Health Support, and Navigating Benefits.

💙 Need support or want to take action? Visit Wheelie Links for petitions, resources, and help navigating PIP and Motability challenges.

Explore Wheelie Links

Let’s chat in the comments about how you feel about this survey.

Rach xx

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The Devastating Impact of Losing PIP Daily Living on Motability Car users

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Press play to watch/listen to “The Devastating Impact of Losing PIP Daily Living on Motability Car users” or scroll to continue reading.

For Disabled People, Losing PIP Daily Living Can Mean Losing Their Lifeline

Personal Independence Payment (PIP) is meant to support disabled people in living independent, dignified lives. It’s not just about money—it’s about mobility, care, and access to the world. When PIP Daily Living is removed, the ripple effect can be devastating.

Especially for those who rely on Motability cars, the impact can mean losing access to essential care OR giving up the vehicle they depend on.

The Overlooked Connection Between PIP Daily Living and Motability

How Losing PIP Daily Living Affects Motability Car Users

PIP is split into two parts:

  • Daily living (care)
  • Mobility

While Motability car users’ eligibility rules are tied to the mobility component, losing the care component (Daily Living) often leads to full reassessments, and in many cases, the entire PIP award being downgraded or removed. That includes mobility entitlement and therefore, the Motability car.

Orange background with black text, choices, care or car with open hands over and over a black car

Two Impossible Choices: Care or Car?

Pip reassessment impact

For some, the PIP mobility component remains, but the care component (Daily Living) is removed, meaning they now have to pay out of pocket for essential care needs.

And what happens when you can’t afford both care and a car?

People are being forced to give up their vehicles just to afford help at home.

Others lose the car outright due to reassessment outcomes that ignore the realities of fluctuating or invisible conditions, like multiple sclerosis.

The effects of losing PIP daily living go far beyond finances
Unable to get to medical appointments
No access to employment or education
Unable to attend social or community events
Unable to maintain independence
Losing their connection with the outside world

The Human Cost

The effects of losing PIP Daily Living support go far beyond finances; they cut off vital services and mobility, leaving many disabled people isolated.

  • Get to medical appointments
  • Access employment or education
  • Attend social or community events
  • Maintain independence

Taking that away means people become housebound, isolated, and often mentally unwell from the sudden and traumatic loss of autonomy.

Some describe it as losing their last connection to the outside world.

It’s Not Just a Car, It’s a Lifeline

For many disabled drivers in the UK, Motability vehicles are more than just transport—they are their only link to independence.

When you take away care support, you’re not just cutting back a line item on a benefits form. You’re forcing people into impossible choices:

  • Do I pay for a carer or keep my car?
  • Do I go without meals or miss my hospital appointments?
  • Do I give up work or spend my rent money on taxis?

These are the real-life questions disabled drivers and their carers are facing because of one decision to remove the care component of PIP.

Pale blue text in blue circle take a holistic view of support needs
Pale blue text in blue circle reduce reassessment trauma
Pale blue text in blue circle guarantee continued access to motability where needed
Pale blue text in blue circle respect lived experience of diabled people
Pale blue text in blue circle personal independence payments must reflect lived experience

What Needs to Change

We urgently need a policy that recognises the interconnectedness of care, mobility, and independence. People should never have to choose between having a car and receiving personal care.

A fairer, more compassionate system would:

  • Take a holistic view of support needs
  • Reduce reassessment trauma
  • Guarantee continued access to Motability where needed
  • Respect the lived experience of disabled people
  • Personal Independence payments must reflect lived experience

Final Thoughts

Removing the Daily Living component of PIP can cause disabled people to lose their Motability car and independence in one stroke.

It does far more than reduce financial support; it disrupts lives, isolates people, and in too many cases, removes their only means of staying connected to the world outside their front door.

If the government wants to support disabled people, it must recognise that removing care support isn’t a cost-saving measure, it’s a lifeline cut.

Related articles on Disability rights, Mental Health Support, and Navigating Benefits.

💙 Need support or want to take action? Visit Wheelie Links for petitions, resources, and help navigating PIP and Motability challenges.
Explore Wheelie Links

Let’s chat in the comments about how this will affect you.

Rach xx

Latest Posts

MS and Employment: Should the Government Be Pushing People with MS Back Into Work?

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Press play to watch/listen to “MS and Employment: Should the Government Be Pushing People with MS Back Into Work?” or scroll to continue reading.

The MS and Work Debate: Help or Harm?

For many living with Multiple Sclerosis (MS), employment is a deeply personal and often complex issue. The UK government has made it a priority to encourage people with long-term health conditions to stay in or return to work, and MS is frequently part of that conversation.

But this has sparked debate within the MS and wider disability community. Some see these efforts as steps toward independence and inclusion. Others fear it’s a veiled attempt to reduce benefit claims, even if it means compromising the well-being of those affected.

As a health and advocacy platform, I believe in empowering choice. Let’s look at the government’s approach, both for and against.

👍 The Case For Encouraging Work for People with MS

1. Empowerment Through Opportunity

Work isn’t just about earning money. For many people with MS, it’s about retaining a sense of identity, purpose, and contribution. With the right accommodations, returning to work can be a confidence boost, not a burden.

2. Supportive Government Schemes

Programs like Access to Work offer funding for equipment, support workers, and transport, helping people manage the costs of disability and stay employed. Other initiatives, such as Disability Confident Employers, promote inclusive hiring practices.

3. Flexibility is Becoming More Common

Post-pandemic work culture has changed. Remote work, flexible hours, job-sharing, and phased returns are more accessible than ever, allowing people with MS to manage their symptoms while staying connected professionally.

4. Improved Mental Health and Social Connection

Work can offer a routine, a sense of normalcy, and valuable social interaction, all of which are essential for mental health, especially for those navigating a chronic illness.

👎 The Case Against Government Pressure to Work

1. Not Everyone Can Work

MS is an unpredictable condition. Fatigue, pain, and cognitive issues can fluctuate daily. Forcing people into employment when they’re not physically or mentally ready can be harmful and even trigger relapses.

2. Stigma and Misunderstanding

Even with inclusive policies, workplace discrimination still exists. Some employers don’t understand MS or aren’t prepared to make accommodations. This makes the return to work more stressful than supportive.

3. Unfair Assessments and Sanctions

Many people with MS report facing pressure from benefits assessments like PIP or ESA. When support is reduced based on flawed evaluations, people are left choosing between health and financial survival.

4. Invisible Illness = Invisible Struggles

One of the hardest parts of MS is that many symptoms are invisible. Just because someone “looks fine” doesn’t mean they’re well enough to work, yet some policies still use outdated, surface-level criteria.

Should the government be pushing people with MS into work? For and Against as the text above

What’s the Middle Ground?

Encouraging employment can be empowering — but only if it’s built on the following values:

  • Choice: The person with MS should always have control over their work decisions.
  • Support: Systems must be flexible and responsive to individual needs.
  • Education: Employers and policymakers must understand what living with MS means.
  • Security: No one should lose vital financial support because they tried to work.

Final Thoughts: Advocacy First, Always

People with MS are resilient, skilled, and valuable members of society, whether they’re working, volunteering, caregiving, or simply surviving. The government’s role should be to support, not pressure. Empower, not punish. Offer choices, not ultimatums.

I believe that any return-to-work effort should be person-led, not policy-led.

💬 What’s Your Experience?
I want to hear from you. Have you faced challenges returning to work with MS? Have government policies helped or hurt your journey? Share your story in the comments or contact me via social media.

🧠 Need Support?
Check out Wheelie Links for links to MS charities, legal aid, employment rights, and community groups.

Rach xx

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