An open letter to Andy Burnham, expected to become our next Prime Minister, to explain what disabled people want from him and the wider government
I never wanted to live on benefits.
Let me say that again: I never wanted to live on benefits.
I never wanted this life.
Like millions of disabled people across the United Kingdom, I did not wake up one morning and decide that I no longer wanted to work. I did not choose to spend over a decade housebound and bedridden with Myalgic Encephalomyelitis (ME). I did not choose chronic pain. I did not choose Endometriosis. I did not choose De Quervain’s Syndrome. I did not choose Non-Alcoholic Fatty Liver Disease.
I worked. I paid taxes. I contributed.
And now, like so many others, I find myself fighting not only my illnesses but also a system that too often treats disabled people as a problem to be managed rather than citizens to be supported.
That is why I am writing this letter.
Not as a politician.
Not as an economist.
Not as someone chasing headlines.
But as a disabled woman, a journalist, an advocate, a wife, a mother, and someone who speaks every day to people whose lives have been changed forever by illness, disability, injury, and circumstance.
With Sir Keir Starmer stepping down and Andy Burnham emerging as the most likely next Prime Minister, many disabled people are asking the same question:
What happens now?
More importantly:
Will things finally change?
Because for far too long disabled people have been asked to accept less.
Less support.
Less dignity.
Less independence.
Less opportunity.
And we are tired.
Not tired of fighting.
Tired of having to justify why we deserve the same opportunities as everyone else.
The benefits system is already broken
One of the biggest misconceptions about disability benefits is that they provide a comfortable life.
They do not.
For many disabled people, benefits are not a lifestyle, they are a lifeline.
People love to imagine that those claiming Personal Independence Payment (PIP) or Universal Credit are living comfortably while taxpayers fund their lifestyle.
The reality could not be further from the truth.
Living on benefits often means making impossible choices.
Choosing between heating and food.
Putting off dental treatment because you cannot afford it.
Wearing clothes long past the point they should have been replaced.
Avoiding social activities because simply leaving the house costs money.
Many disabled people already live in constant fear of reassessments, paperwork, and decisions that can remove vital support overnight.
The debate around disability benefits often ignores one simple truth:
Most disabled people would trade every penny of support they receive if it meant getting their health, independence, and future back.
What disabled people need is not suspicion. We need security.
We need a system that recognises the reality of living with long-term illness and disability.
Mental health does not work 9 to 5
Mental health crises do not follow office hours.
Depression does not clock off at 5pm.
Anxiety does not disappear overnight.
Suicidal thoughts do not wait until Monday morning.
Yet far too often support services are unavailable when people need them most.
Across the country, police officers are regularly responding to mental health crises because there is simply nobody else available.
This is unfair on the individual in crisis.
It is unfair on families.
And it is unfair on police officers who are already stretched beyond capacity.
Mental health emergencies should be treated by mental health professionals.
Not because the police do not care.
But because they are not psychologists, psychiatrists, counsellors, or crisis specialists.
A modern Britain should provide access to mental health support twenty-four hours a day.
Early intervention saves lives.
Appropriate intervention saves money.
Most importantly, compassionate intervention saves people.
Healthcare should not depend on your postcode
One of the greatest injustices in modern healthcare is the postcode lottery.
The treatment you receive should not depend on where you happen to live.
Yet that is exactly what happens.
Across the UK, people with the same diagnosis often receive completely different levels of care.
One person may receive specialist support, occupational therapy, mobility equipment, and regular reviews.
Another may receive almost nothing.
How can that be right?
If a powered wheelchair is appropriate for one person with severe ME, it should be available to every person with severe ME who needs one.
If occupational therapy improves one patient’s quality of life, every patient should have access to that same support.
If specialist services exist in one region, people elsewhere should not be left behind.
Illness does not change when you cross a county border.
Healthcare standards should not either.
Stop treating conditions. Start treating patients.
One of the biggest problems within the NHS is that patients are often treated as a collection of separate conditions rather than as whole people.
I live with Myalgic Encephalomyelitis.
I live with Endometriosis.
I live with De Quervain’s Syndrome.
I live with liver disease.
On paper, that means four specialists.
In reality, it means four waiting lists.
Four referrals.
Four sets of appointments.
Four departments working independently.
If I develop new symptoms, I may need to start the process all over again.
Referral.
Assessment.
Investigation.
Follow-up.
Results.
Further tests.
Further appointments.
Months can pass before meaningful action is taken.
Meanwhile, I am still the same person sitting in the same bed trying to manage all of these conditions simultaneously.
The NHS sees four separate conditions, I need the NHS to see one person.
A joined-up approach to healthcare would save money, reduce duplication, improve communication, and create a far better experience for patients.
Most importantly, it would recognise a simple truth:
People do not experience illness in separate departments.
Many disabled people want to work – but we need the right support
One of the most frustrating assumptions about disabled people is that we do not want to work.
Nothing could be further from the truth.
Many of us desperately want purpose. We want to contribute. We want to use our skills, knowledge and experience to make a difference.
I know this because I see it every day.
Despite being almost completely housebound and spending much of my life in bed with ME, I still run support groups, write articles, campaign for change, create content, and help other people navigate life with disability and chronic illness.
I do not do this because somebody forces me to.
I do it because contribution matters.
Purpose matters.
Feeling useful matters.
The problem is that politicians often talk about disabled people and work as though the only options are employment or dependency. Real life is far more complicated than that.
Many disabled people could contribute if they had the right support:
Flexible working.
Home working.
Adaptive technology.
Access to Work funding.
Understanding employers.
Specialist equipment.
Gradual returns to employment.
The reality is that many disabled people are not unemployed because they lack motivation. They are unemployed because the support systems designed to help them are often difficult to access, underfunded, or unavailable.
For others, work may never be possible because their illness is too severe.
That does not mean their lives have no value.
It does not mean they are a burden.
It does not mean they have nothing to offer society.
Success should not be measured solely by how many hours someone can spend in an office.
It should be measured by whether people are given the opportunity to live with dignity, purpose and independence.
If we truly want more disabled people in employment, we must stop focusing on punishment and start focusing on support.
Because nobody was ever empowered by being threatened.
But countless people have been empowered when somebody believed in them and gave them the tools to succeed.
The reality of contributing with severe ME
I often hear politicians talk about helping disabled people into work, and I understand why. Purpose matters. Contribution matters. Feeling useful matters.
But what is often missing from these conversations is an understanding of what severe illness actually looks like.
I may run support groups, write articles, campaign for better services, and create content, but none of these things happen in the way most people imagine.
Everything in my life is dictated by ME.
A task that might take a healthy person 30 minutes can take me several days.
I cannot simply sit at a desk and work for eight hours. I cannot push through fatigue. I cannot “catch up tomorrow” if I have a bad day.
If I write an article, something else in my life usually has to be sacrificed.
Perhaps I cannot spend time with my family.
Perhaps I cannot watch television with my husband.
Perhaps I cannot reply to messages.
Perhaps I cannot shower that day.
Every decision becomes a trade-off.
Every activity has a cost.
Technology helps me bridge some of these gaps. I rely heavily on speech-to-text software because writing by hand or typing for long periods is often impossible. I listen to audiobooks, podcasts and audio content to carry out research because reading for extended periods can be exhausting and worsen my symptoms.
But even with those adaptations, there are limits.
People often see the finished article, the published blog post, or the campaign graphic and assume it appeared easily.
They do not see the hours spent resting beforehand.
They do not see the recovery afterwards.
They do not see the pain, the exhaustion, or the post-exertional malaise that follows.
This is why so many disabled people become frustrated when politicians speak about work as though effort alone is enough.
The issue is rarely willingness.
The issue is capacity.
Many disabled people want to contribute to society.
Many already do.
But contribution must be understood through the reality of disability, not through the expectations of a healthy person.
Success should not be measured solely by how many hours someone can spend in an office.
It should be measured by whether people are given the opportunity to contribute in ways that work for them while protecting what remains of their health and quality of life.
Protect specialist services before they disappear
As someone living with ME, I know how important specialist services are.
I also know how fragile they have become.
Across the country we hear the same stories.
Budget pressures.
Staff reductions.
Longer waiting times.
Reduced services.
Entire teams struggling to survive.
General Practitioners play a vital role, but they cannot be expected to become experts in every complex condition.
Specialist clinics exist because specialist knowledge matters.
Yet every time funding is reduced, patients lose access to the people best equipped to help them.
Counsellors disappear.
Occupational therapists disappear.
Support workers disappear.
Administrative teams shrink.
Waiting times grow.
Patients become frustrated.
Then policymakers wonder why outcomes worsen.
We cannot continue dismantling specialist services and expect patient care to improve.
Investment in specialist care is not a luxury.
It is essential.
What disabled people need from their next Prime Minister
Disabled people are not asking for special treatment.
We are asking for equal treatment.
We need a benefits system that provides security rather than fear.
We need healthcare that is consistent regardless of postcode.
We need mental health services available whenever people need them.
We need joined-up care that treats the whole patient.
We need specialist services protected and properly funded.
We need access to mobility equipment, occupational therapy, and practical support.
We need to be included in decisions that affect our lives.
Most of all, we need to be listened to.
This is bigger than politics
This issue goes far beyond political parties.
Illness does not care how you vote.
Disability does not care which party rosette you wear.
Every family in Britain is only one diagnosis away from needing the support they currently take for granted.
Disability can happen to anyone.
An accident.
A diagnosis.
A virus.
A fall.
A genetic condition.
A mental health crisis.
Life can change in a moment.
That is why disability policy matters to everyone.
Not just disabled people.
A final word
Andy Burnham has often spoken about fairness, dignity, and standing up for those who feel left behind.
Disabled people need those words to become action.
Not next year.
Not after another review.
Not after another consultation.
Now.
Because behind every statistic is a person.
Behind every policy is a family.
Behind every budget decision is a life.
This is not just my letter.
It belongs to every disabled person, every carer, every parent, every partner, and every family member who knows Britain can do better.
We are not asking for special treatment.
We are asking for equal treatment.
We are asking to be seen.
We are asking to be heard.
And we are asking for change.
With love and determination,
Alisha Whittam
Disability Journalist & Advocate
Friends of Bylines Network
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