FREE CHRIS

Since 2022: The Fight to Get My Life Back

For many years, I had control over my own care and my own life.

I managed my personal health budget, chose the people who supported me and built a dependable team around me. Some of my carers stayed with me for many years because we trusted one another. They understood my speech, my routines, my disabilities and how I wanted to live.

Most importantly, I was involved in every decision about my life.

Then, in 2022, everything changed.

My personal health budget was taken away from me following an account of events that I maintain was not true. Control of my care was handed to care agencies, and decisions that I had previously made for myself began being made by other people.

I did not suddenly lose the ability to know what was right for me. I lost the authority to act on it.

Losing More Than a Budget

This was never just about money.

Losing control of my personal health budget meant losing the freedom to choose who entered my home, who provided my personal care and who supported me during the most vulnerable parts of my day.

Before 2022, I could recruit people who suited my needs and remove people who did not. After 2022, I became dependent on agencies to decide who would attend and when they would arrive.

There have been times when unfamiliar carers have been sent to my home without a proper introduction. Some could not understand my speech, did not know my routines or lacked the experience needed to support me safely.

Because of my disabilities, communication can take patience. My speech may not always be immediately clear, but my mind is clear and my choices still matter. Sending someone who cannot communicate with me properly does not only make the shift difficult—it can leave me feeling unsafe and powerless inside my own home.

I have repeatedly asked for a stable team of carers and for every new person to have a meet-and-greet with me before supporting me. That is not an unreasonable demand. It is a basic safeguard for both me and the carer.

Four Years Without a Break

Since my personal health budget was taken away, I have not had a holiday or even a proper break away for four years.

Before 2022, having control of my budget gave me the freedom to organise suitable support and enjoy my life outside my home. Travelling and taking breaks were an important part of maintaining my independence and wellbeing. Losing control of my budget did not only affect my care—it restricted my whole life.

There have also been occasions when complete strangers have been sent to my home to work a day shift without my knowledge or consultation.

On one occasion, I was asleep when a person I had never met entered my home, woke me up and said, “Hi, I’m your carer today.” This happened twice!

Imagine waking up in your own home to find a stranger standing there, expecting to provide your personal care. I had not been told they were coming, I had not met them beforehand and nobody had asked whether I felt comfortable with them.

Being disabled does not mean that anybody should be allowed into my home without my agreement. My home is my private space, and I should have the right to know who is entering it—especially when that person will be supporting me with personal and intimate parts of my daily life.

This is why I continue to insist on proper notice and a meet-and-greet before any new carer works with me. It is not me being difficult. It is about privacy, dignity, safety and my basic right to have a say in what happens inside my own home.

When “Care” Takes Away Your Independence

People sometimes assume that receiving more care automatically means receiving more support. That has not always been my experience.

Care should help a disabled person live more independently. It should not take control away from them.

Since 2022, I have experienced unexpected changes to my rota, unsuitable carers, poor communication and occasions when essential support was not available. There have been times when I have been left without the help I needed for meals, medication, washing or getting safely through the day.

I have also faced a terrible choice: accept support from someone I do not know or do not feel safe with, or ask them to leave and risk being left without any support at all.

That is not genuine choice.

My home should be the place where I feel safest. Instead, I have sometimes been made to feel like a visitor in my own life while other people make decisions around me.

My Health Did Not Pause While I Was Fighting

While all of this was happening, I was still dealing with serious and complicated health problems.

In August 2025, I collapsed and needed emergency brain surgery. It was another frightening chapter in a life already shaped by brain tumours, operations, paralysis, epilepsy, breathing difficulties and years of rehabilitation.

When your health is fragile, reliable care is not a luxury. It can be the difference between being safe and being placed at risk.

I should have been able to concentrate on recovering. Instead, I continued having to fight for communication, consistency and basic control over my care.

That fight is exhausting—but I have refused to give up.

I Am Still Chris

I am disabled, but I am not incapable.

I know what works for me. I know which carers understand my needs. I know how I want my support organised, and I know what makes me feel safe in my own home.

Before becoming disabled, I worked hard, built a career and took pride in being fiercely independent. After leaving hospital in a wheelchair, I rebuilt my life again. I travelled, took on challenges and proved that disability did not have to stop me from living.

The events since 2022 have tested that independence in a completely different way. My greatest challenge is no longer jumping from a bridge, learning to ski or travelling around the world.

It is getting other people to recognise that my life still belongs to me.

Taking Back Control

I am fighting to regain control of my personal health budget so that I can once again choose and manage the people who support me.

I want to build a reliable care team made up of people I have met, approved and trust. I want to help create my own rota, receive proper notice of changes and stop unfamiliar people from being sent into my home without an introduction.

These are not special privileges. They are the foundations of dignity, safety and independent living.

My aim is not to reject care. My aim is to receive care that genuinely supports me.

I want partnership instead of decisions being imposed on me. I want choice instead of ultimatums. I want people to speak with me rather than about me.

Above all, I want the same freedom that everyone deserves: the freedom to decide how I live and who I allow into my life.

The Fight Continues

It is now 2026, and I am still fighting to regain what I lost in 2022.

There have been meetings, complaints, promises and apologies. Some people have listened and tried to help, but the changes I need have still not fully happened. Words are important, but actions speak louder.

I do not want the rest of my life to be controlled by a disputed account of the past. I want to move forward.

I am sharing my story because this is bigger than one care agency, one decision or one disabled man. Other people may also be living without a real voice in the care they receive. They may be frightened to complain because they depend on that same system every day.

I want my experience to help change that.

I am not asking anyone to feel sorry for me. I am asking people to stand beside me.

I survived brain tumours, major operations and two years in hospital. I rebuilt my life once, and I am determined to do it again.

I want control over my care.
I want my independence back.
I want my freedom back.

If you believe disabled people should have the right to choose who supports them and how they live, please join the movement and help me make that freedom possible.