I am an unpaid carer for my adult daughter, who has complex disabilities and significant care needs. I have been caring for her for over 23 years. Over the last five years, her health has been unstable, with repeated long hospital admissions during which I was left to provide her care single-handedly. Carrying this level of responsibility alongside my own serious illness has undoubtedly affected my health and ability to recover. In 2025 alone, this included two prolonged hospital admissions. During one of these, I remained in situ providing care 24 hours a day, yet still lost essential benefits on the assumption that the hospital had taken over — which it had not.

Alongside this, I live with chronic heart failure and am currently under the care of a specialist transplant team. I have already undergone a heart transplant assessment, and ongoing reviews mean it is increasingly likely that I will be placed on the transplant list. This requires me to stay close to the hospital for frequent appointments, test, and the possibility of urgent admission at short notice.

Managing intensive caring responsibilities alongside my own life-limiting condition has left me physically and emotionally exhausted. For years, I have been battling systems simply to secure the right help and support. Even when you tell social services that you are being assessed for a heart transplant, that you need care in place so that you can finally look after your own health after decades of caring for someone else, the response is still resistance. Instead of support, it has repeatedly resulted in the need to start legal proceedings. I’ve had to justify the need for me to get medical help and for my daughter to have skilled carers in place over and over this last year.

This is not about “pulling a sicky” or stepping away from responsibility. It is about fighting for the right to survive. It is about ensuring that the child I have dedicated my entire life to is safely cared for, so that I can receive the medical care I need and be here for as long as possible for her. It’s about recognising how important I am to my daughter and to help her “mum” in her time of need.

Yet time and again, I have felt disbelieved. As though asking for help during heart transplant assessment must somehow be an exaggeration or an excuse (I appreciate I look quite well - one social worker said, “I thought you’d look more breathless”). It is difficult to comprehend why anyone would think a parent would lie about something of this magnitude.

Although carers are now finally in place for my daughter after a year-long struggle, I still need to create some physical and emotional space to recover properly following procedures. With heart failure and especially with transplant likely, rest is not optional. It is essential.

At present, that space simply does not exist.

The support I am asking for is practical and specific. Donations will help cover:

• Temporary accommodation near the hospital

• Travel costs for essential appointments

• Additional unavoidable costs, such as dog care (for my daughters dog), while I am away from home

Most importantly, this support would give me the chance to stabilise my health, recover properly, and continue caring for my daughter for as long as possible.

After more than 23 years as an unpaid carer — without the opportunity to build a career or pension, and relying largely on disability-related benefits — I simply do not have a financial buffer to absorb the costs that come with serious illness.

Even small contributions would make a meaningful difference.

Asking for help like this does not come easily, but right now it would relieve an enormous amount of pressure and allow me to focus on my health, recovery, and survival. Thank you so much for reading, sharing, and for any support you’re able to give.

Thank you

Rachel ☺️