National Carers Week ( UK )

This year the focus is on equality.

Photo by National Cancer Institute on Unsplash

It’s National Carer’s Week in the UK ( 9-16th June 2025) . The theme this year is equality. A new report shows that many carers struggle to take time out, look after their own health, and stay in paid employment. The report suggests a new National Carers Strategy, including engaging with carers to understand their needs; making being a carer a protected characteristic by updating the equality act; a review of the (currently inadequate) benefits that carers can access; and investing in social care so that carers can access respite and support.

The sad fact is that the inequalities carers face are often on top of existing inequalities - more women than men are unpaid carers; people from ethnic minority groups can struggle to access help and support, and may face language or cultural barriers and experience more isolation in their role as carers. And people living in poverty experience more ill health to start with - poverty leads to ill health which leads to more poverty.

I didn’t really call myself a carer for a long time - most people don’t: they just crack on with it. And reading this report, I thought, well I am from a privileged background, this does not apply to me. But in fact it does. I also had to step back from a demanding job, and accept a reduced income. I experienced anxiety requiring medication and therapy. But this is not a pity party: ours is a success story of cancer survival, but this might be in part because of our white, middle-class background and my medical training. We were only a few years from our planned retirement - we had savings and insurances which meant we could manage. And I had the advantage of knowing the systems and being able to advocate for my husband.

On a number of occasions as we navigated a struggling NHS, I wondered how those without medical knowledge, or a medical relative, cope in the system. And of course, this is another inequality - a system that worked well would not involve situations where a patients' knowledge or connections gave them a survival advantage. I would add another suggestion to the National Carers Strategy - better access to advocates for patients, and their carers, who are not able to speak up for themselves.

Den is doing well after his 5 year cancer experience, so my caring role at the moment is minimal. But over that time, I have experienced the many demands of being a carer. Sometimes it was physical stuff - from managing a nasogastric tube and feeds, to sorting out his medications when he was not well enough himself, to taking him for radiotherapy, and visiting him during prolonged hospital stays, providing company, Vimto and clean pyjamas, while managing the house and family. Other times it was more emotional - showing him he was not alone, providing companionship when he couldn’t do his usual social things. And always, it was about explaining, demystifying the medical stuff, advocating for him.

For two and a half years, before I burnt out, I juggled work commitments around that, while also processing the risk to his mortality. It’s a hard, emotional journey, one that is very isolating at times, but it’s one I am proud to have been on. And while it is lonely, you find your own relationship, and that with your true friends, is enriched. Den went to hell and back, and he continues to live with difficult complications of his treatment. But now his quality of life, and therefore mine, is pretty good.

There is no doubt that my interventions helped things along: I reduced delays; I challenged decisions; I picked up on issues that were missed by overworked hospital staff working with unsatisfactory IT and system obstacles: it is systems, not individuals that lead to errors and poorer outcomes.

So, inequalities exist. I experienced some of them. But I was acutely aware of the advantages I had. And this is why I write. If I can share my experience of the times I needed to intervene, and offer tips on how to survive in a broken system that sometimes struggles to listen, then maybe others without my privilege will have the confidence to chase that result, ask the difficult questions, and keep on top of their, or their loved one’s, healthcare.