What Does It Take for an Unpaid Carer's Life to Matter?

There is something almost laughable about sending emails to social care explaining that your transplant team wants to put you on the heart transplant waiting list and that you need them to finally fund the skilled provider your disabled daughter needs, only to receive a reply several days later beginning, “I hope this email finds you well.”

Well, no, actually. It doesn’t find me bloody well. That’s rather the point of the emails I’ve been sending for the past eighteen months.

I appreciate it’s a standard opening to an email, but when the people writing it know perfectly well you are unwell and that the very reason you’re contacting them repeatedly is because you need to be able to communicate with your own cardiac team and let them know your decision, it begins to feel rather thoughtless. I might even find it funny if the consequences weren’t so serious.

Back in May 2025, my cardiologist wrote to social care explaining that I would need appropriate 24-hour care in place for my daughter. This was months before I even underwent my first transplant assessment. That was due 5 months later. I was trying to plan. The warning was there, the need was clear and there was time to plan. Yet here I am, nearly eighteen months later and we are still trying to get the arrangements properly established.

I had thought that telling social care over a month ago that my transplant team intended to list me might finally create some urgency. They’ve known for 17 + months now, as I’ve gone through various procedures and tests to determine if I need to be listed. Apparently not. And that, more than anything, has made me question what it actually takes for the needs of an unpaid carer to be taken seriously.

I was recently asked by a nurse, “Did you not think to plan for this?”

I was taken aback. Plan for it? I have done little else but try to plan for it. I have spent months, indeed years, trying to ensure my daughter has appropriate care, and I specifically raised the implications of a possible heart transplant long before I reached this stage. The problem has never been a lack of planning on my part. It has been the failure of the organisations responsible for her care to put suitable skilled providers in place, possibly preferring the “cheaper” options rather than the “right” provider.

My daughter has been eligible for NHS Continuing Healthcare for years, yet I haven’t seen anyone from the Integrated Care Board for six years. Responsibility for arranging her care was delegated to social care, but from my experience, her package has been treated as though it were simply another social care arrangement, rather than the provision of complex care for someone with significant complex healthcare needs. In West Yorkshire the ICB delegate to social care. If the person has a learning disability as well as a primary healthcare need - they are not entitled to a nurse care manager. This leaves me holding the fort, co-ordinating, chasing, training, picking up the pieces.

For years, I have questioned how it can be considered acceptable to send carers into our home who are not required to have any previous experience of supporting people with complex needs. Some may be perfectly lovely people, but being kind and willing is not the same as having the knowledge, training and experience necessary to provide safe, competent care.

And when carers don’t have those skills, who do you think takes responsibility? Who recognises when something is wrong, explains what should be happening, intervenes when care is inadequate, when the carers simply don’t turn up and spends hours trying to get it put right?

I do.

That is the part of this situation which seems to be consistently overlooked. An inadequately skilled care package does not remove the responsibility from the family. It simply transfers much of the work back onto them, while allowing the organisations commissioning and arranging the care to regard the package as being in place.

So when somebody asks whether I thought to plan for my heart transplant, I find myself wondering what more I was supposed to have done. I raised the issue, sought appropriate support, explained my deteriorating health and repeatedly warned that the arrangements needed to be sustainable without relying on me.

I cannot commission my daughter’s care. I cannot approve the funding. I cannot make the ICB or social care fulfil their responsibilities. All I can do is keep asking, challenging and chasing, which is precisely what my cardiac team has told me I should no longer be having to do.

I did plan for this. The question is why the organisations responsible for providing my daughter’s care did not act on those plans.

I am 49 years old and have spent almost 24 years caring for my daughter, who has profound disabilities and complex needs. I was born with a serious heart condition and have lived with its consequences all my life, but for much of my adulthood, caring has shaped almost everything I have done. Work, finances, relationships, where I live, when I can go out and how I arrange my own medical appointments have all had to fit around my daughter’s needs. That’s the reality of being a parent carer, particularly when the person you love cannot speak for herself or explain when something is wrong.

I don’t resent my daughter for any of it. She didn’t choose her disabilities, any more than I chose to be born with a heart condition. What I increasingly resent is the assumption that because I am her mother, I will somehow always be available to compensate for whatever the social care system and ICB fails to provide.

The UK has spent years praising unpaid carers while quietly making itself dependent on them. We are described as dedicated, resilient, selfless and inspirational, and politicians are never short of warm words about the extraordinary contribution we make. But behind all that praise is a rather uncomfortable truth. The system relies on families doing an enormous amount of work that would otherwise have to be organised, staffed and paid for by public services. And because most of us love the people we care for and cannot simply walk away, there is very little incentive for that reliance to change.

When care arrangements break down, families are expected to step in. When assessments are delayed, we chase them. When decisions are made without properly understanding someone’s needs, we challenge them. We attend meetings, correct inaccuracies, explain medical histories, identify risks and spend hours writing emails to people whose professional responsibility is to ensure that appropriate care is provided. It is work that happens in the evenings, during the night, at weekends and during whatever time might otherwise have been available to rest or look after ourselves.

The difficulty is that once a family has demonstrated its willingness to take responsibility, that willingness can gradually become an expectation. The more capable you appear, the more is asked of you. The better you become at navigating the system, the more the system seems to rely on you to navigate it. And the longer you continue, the less anyone appears to question whether you should have been expected to carry that responsibility in the first place.

In my case, the consequences of that assumption have become impossible to ignore.

I have advanced heart failure. My heart is severely compromised, and I have reached the stage of being listed for a transplant. My cardiac team has made clear that I cannot continue to be relied upon to provide care. This is not a question of feeling tired, needing a holiday or wanting a little more time to myself. It is a serious medical reality. Yet securing appropriate arrangements for my daughter has involved months of uncertainty, repeated discussions, challenges and decisions that continue to demand considerable time and energy from me - ultimately impacting my health.

The pressure this creates is difficult to describe. I am trying to prepare for one of the most significant medical interventions imaginable, while knowing that the stability of my daughter’s future cannot simply be assumed.

I am expected to attend meetings, review plans, meet prospective carers, assess whether they are suitable, question decisions and help organise the transition to a new care arrangement. Of course I want to be involved in decisions affecting my daughter. Nobody knows her better than I do, and I would never suggest that families should be excluded from decisions about the people they love. But there is an enormous difference between being consulted as a parent and being relied upon to make the entire process work.

I have even found myself having to explain that I cannot physically spend twelve hours a day meeting prospective carers, or attend meetings every day of the week, because doing so would go directly against the advice of my cardiac team. The fact that I have to spell this out, while preparing for a heart transplant, says rather a lot about how little consideration is sometimes given to the health of the person everyone has become accustomed to depending upon.

And I cannot simply accept an inadequate arrangement for the sake of getting something in place. My daughter has complex needs. She requires people who understand her communication, recognise when she is distressed or unwell and can provide safe, consistent care. If the arrangements are rushed, if staff are unsuitable or insufficiently trained, or if the package fails, the consequences will fall on her first. And inevitably, the expectation will be that I step in to resolve it.

That is the trap so many unpaid carers find themselves in. We are criticised, sometimes subtly, for being too involved, too demanding or unwilling to compromise, while simultaneously being expected to take responsibility when things go wrong. We are encouraged to trust the professionals, but when decisions prove inadequate, it is often the family that must identify the problem, challenge it and push for a solution.

I have come to believe that the language used around unpaid caring is part of the problem. We are constantly told how resilient we are, how inspirational our dedication is and how lucky our relatives are to have us. It all sounds lovely, but I sometimes wonder whether praising carers has become a convenient alternative to properly supporting them. It is easier to admire someone for coping than to ask why they are being required to cope with so much in the first place.

We would never consider it acceptable for an employee to work indefinitely without proper rest, to remain permanently available or to be responsible for resolving every failure within an organisation. We recognise that paid workers need protection, reasonable expectations and time off when they are ill. Yet when the work is caring for a disabled family member, those same principles seem to disappear. The fact that someone is providing care out of love somehow becomes justification for demands that would be unacceptable in almost any other setting.

And when the carer becomes seriously ill, what happens then?

That is the question I now find myself asking, not as a hypothetical argument about social care policy, but as someone whose own health is at stake. I have spent almost a quarter of a century making sure my daughter is safe, understood and properly cared for. I have fought for services, challenged poor decisions and tried to ensure that her disabilities do not prevent her from having the opportunities and experiences that other people take for granted. I have done all of this while managing a serious heart condition of my own.

I never imagined that, when I reached the point of needing a heart transplant, I would still be having to fight so hard to establish the care that would allow me to concentrate on surviving it. Surviving it to ultimately be here for her as long as possible.

In amongst all of this is a mum terrified of not being here anymore for her daughter and leaving her to a system that puts her at risk if I’m not. I’m trying not to think of that part as it doesn’t feel real. That’s the part I’m most scared about - either not surviving transplant and being here for her and/or not being able to get to have a transplant as social care and the ICB don’t provide the skilled care she needs.

There is something particularly difficult about watching time pass when you know your own health is deteriorating. For the organisations involved, another meeting, another assessment or another few weeks may simply be part of an administrative process. For the person waiting, those weeks are not insignificant. They are weeks spent under pressure, dealing with uncertainty and trying to manage responsibilities that medical professionals have already said should no longer rest upon you.

I know there will be other carers across the country experiencing similar situations, although their circumstances may be very different from mine. Some will be postponing operations because there is nobody to provide alternative care. Others will be ignoring their own symptoms, missing appointments or continuing to provide physically demanding support despite being unwell themselves. Many will have spent so long putting another person’s needs first that considering their own health feels almost unnatural.

But surely this is where we need to start questioning the system rather than admiring the sacrifice.

The contribution of unpaid carers is frequently discussed in financial terms, with enormous sums quoted to illustrate how much money families save the country. What is discussed far less often is the personal cost of those savings.

The careers that never happened, the pensions that were never built, the relationships that became difficult to maintain and the physical and mental health problems that developed or worsened while people continued to care.

These are not abstract figures. They are people’s lives.

And I think we have become far too comfortable treating those lives as secondary to the needs of the people they care for. My daughter’s life matters enormously, but so does mine. Her right to appropriate care should not depend on my willingness or physical ability to keep fighting for it, and my right to receive medical treatment should not be compromised by uncertainty over whether the support she needs will be there.

“I hope this email finds you well.”

Perhaps one day it will. But that will require more than polite words and another meeting. It will require the ICB and social care to take meaningful responsibility for putting appropriate, reliable care in place, rather than continuing to depend on the very person whose health now makes that dependence impossible.

Love should never be treated as an unlimited source of free labour, and being a devoted parent should not mean forfeiting the right to look after your own life.

If a mother facing a heart transplant still has to fight this hard to secure appropriate care for her daughter, what hope is there for the thousands of unpaid carers whose own struggles are less visible?

That is not simply a question about how we fund social care. It is a question about how much we really value the people who have spent their lives holding it together.