From carer to colleague: how being a carer has helped inform my work

I poisoned my mother.

It was actually quite easy.

I gave her five doses of paracetamol in 24 hours, instead of four. That’s one more dose of paracetamol than is advised. Staff at NHS 111 told us to go to A&E to check on her accidental poisoning.

In my defence, there were many mitigating circumstances and luckily no serious damage was done, but anyone with experience of caring will know that it can bring with it a huge responsibility. Being a carer requires you to develop skills and expertise you didn’t think you had or necessarily wanted – including managing a high level of risk. There is nothing informal about unpaid care.

Caring for my mother has also meant that my personal and professional worlds collide. Here are just some of the ways in which caring has blurred my boundaries.

It has allowed me to challenge my policy colleagues as to how much care really costs – their estimates are usually way out. It’s so true that people generally don’t have a clue about social care until they or someone close to them needs support. I tend not to share how hard the emotional and practical tasks are of working out how long the money will last and what compromises will have to be made along the way.

Sometimes my experience sits well alongside the focus of my research. Take NHS admin – I see firsthand the burden admin can create for patients, particularly those with multiple long-term conditions. My sisters and I have a spreadsheet to try to manage my mum’s appointments across different NHS trusts, digital platforms and patient portals (each with their own passwords).

I understand how hard it is to find great care. The official channels might be a good place to start but I’ve been known to go door knocking up and down the street and to ring local community groups for advice. Once you find support, you then need to work out the logistics of how to share care across a team drawn from agencies and self-employed care staff.

Caring also reminds me how important the voluntary and community sector are. Caring for my mum has thrown into stark relief how the volunteer-run café (with its home-baked cakes), the singing group or their art classes can enhance health and wellbeing. They provide connections when a person’s life starts to shrink, and in my mother’s case, you start to lose your mobility, eyesight and independence. It reminds me that policies that focus exclusively on the statutory sector are not only missing a trick, but also missing a fundamental aspect of what matters to people.

More recently, I’ve been dipping into the world of tech-enabled care. Inspired by the chat in a carers’ online forum, we’ve tried Amazon Echo’s ‘drop-in’ facility. It allows you to simply appear on screen and speak to someone in their home or in their care home bedroom without them having to work out how to answer a phone. But like most of the new tech we’ve tried, I’m left with the sense that policy-makers and providers who extol the benefits of these new devices (and the future of care) do not see what happens when you try to install them in your own home. It’s never been straightforward. It’s taken us hours to create a set-up that works for us all and numerous calls to support lines for help.

It’s clear that I think unpaid carers need more support, to have their voice heard, and action to reverse the current trend of declining support for carers – there are fewer carers receiving support now than in 2014/15.

Meanwhile my mum laughs when I tell her that her struggles inform my work. And there is much humour to be found in caring situations – but significantly less in the current state of social care. The reality of caring (and being cared for) remains all too hidden.