My name is Daisy, I’m in my 30’s, and I live in Essex.

I’m reaching out to share my story and ask for your support in making my voice heard.

In my late teens/early 20s, I began experiencing complex health challenges, and I now manage over 30 different conditions. Unfortunately, delays and misdiagnoses in my medical journey have led to significant complications.

I have been left having daily strokes, ongoing seizures and the complications from this have just grown. We don’t have the space , housing, equipment , clinical support to keep me well and safe.

A number of my conditions are life limiting. I view my life about making the most of what I have left.

I have been in unsafe housing for 4 years. I’m a full time wheelchair user. There isn’t the space for my wheelchair in the property.

All my care has to be in bed. I’m forced to eat , wash and sleep in the same space. Carers cannot attend to my clinical needs where I live.

I have become sicker and sicker due to the unbearable environment I’m forced to live in.

I am due brain surgery in the next few weeks.

the ICB who fund my care are not helping and have ignored me , my advocate and care team for 8 weeks and my local council are claiming I can move to another unsafe property where my clinical equipment still can’t fit. More information can be found on my social media.

where I am living was classed as risk to life 3 years ago. I can’t come back here after surgery. I’m terrified the NHS will place me in a nursing home. Which won’t be near my friends and family as over 20 nursing homes have refused me. Citing my needs as too complex.

I don’t want to go into a home. When I can be cared for in the community and be an active member of society.

My surgery has already been delayed due to housing and service issues. Due to the complexity of my needs.

Given the desperation of this situation we are now raising funds to get respite post surgery and Equipment I desperately need.

Services have spent years passing me around arguing about who will fund what I need. Therefore I am trying to get the equipment I need via crowd funding.

Time is running out. I have got sicker and sicker the longer this has gone on

Having to enter brain surgery when I’m already so unwell with no secure housing is psychologically very hard. I don’t know if I’ll survive surgery but not having a home to go back to is weighing deeply on my mind and is an additional burden.

​The NHS is an incredible institution that provides vital care to so many, but it is under significant pressure.

Due to the rarity and complexity of my conditions, there is no dedicated healthcare pathway mapped out for my needs. This has led to significant challenges in coordinating my care, resulting in gaps in support and unresolved safeguarding concerns.

The ongoing stress of navigating this complex system and ensuring my needs are met has taken a toll on my health. While I still have life left to live, I want to ensure that the time I have is spent safely, with dignity, and filled with as much joy and independence as possible.

Your support can make a difference. Please consider sharing my story, contributing to my fundraising efforts, or signing the petition to help ensure that individuals with complex needs receive the care and attention they deserve.

Thank you for taking the time to read my story and for any support you can offer.

Daisy x