“I’m the primary carer for my 14 year old daughter, Evie, who has cystic fibrosis. Cystic fibrosis is a lifelong, genetic condition and Evie was diagnosed through a heel prick test when she was 14 days old. My wife and I have been providing the care ever since then, ensuring that she has as full a life as possible.

“Evie needs a lot of physical care. Ever since she’s been a baby, she’s had daily percussion – a kind of physiotherapy to move the mucus around so that she doesn’t get any chest infections. Every meal is punctuated with medication to break down the fats in her food, because her pancreas doesn’t do that. She’s been on antibiotics pretty much since she was a couple of weeks old. And at the moment she’s on nebulised medicines because she’s got a bug growing in her lungs. I guess she’s now a pro at taking meds – my wife needs water to take a paracetamol, but Evie will just swallow it down!

“Now Evie is older, she does a lot of activities to benefit her health. She loves singing, and it’s really good for her breath control. She’s also very active and enjoys sports – running, swimming, that kind of thing. But the difficulty is respecting Evie’s agency to make choices for herself, whilst also understanding that we as parents know what’s good for her. Sometimes those things don’t go together and there’s a push back in terms of her treatment. Sometimes she’ll say ‘no, I don’t want to do that today’. And you can’t make her do it, so there’s levers that we pull to try and convince her to do what she needs to do for her health.

“Currently, our family lives in an extended household, with my sister, my brother in law, my niece, my nephew, my mum and my dad. It’s helpful to have a family structure around you, providing support and encouragement. For example, somebody else can explain to Evie why her treatment is so important, from a different angle from us as parents. My sister is really good at that; she’ll spend time with Evie and take her out. They both have that connection.

“As well as the physical, practical side, the emotional side of caring has been an incredible journey. Cystic fibrosis is a genetic condition, so my wife and I had to come to terms with that. But I wish I’d come to terms with the fact I was a carer sooner. I’ve always had an awareness that caring was part of my life; that’s thrust upon you with the diagnosis of cystic fibrosis. I’ve also previously worked with adults with a learning disability, so I know the care sector. But there’s not always an awareness of what help is available to you as a carer. You’re just going through it and hoping for the best.

“I think what’s been helpful now is working somewhere where I have an understanding line manager. At the Met Office I’m privileged enough to work somewhere with a really good work culture around this sort of thing, and the civil services’ Carer Passport was my way into accessing that support. When a trip to hospital is only a phone call away, I know that I can drop what I’m doing if I need to and go and sort out the situation because there’s a plan in place. It’s a load off my mind. I also have that flexibility to work when I can, which is the difference between working and not working. It gives me the ability to be able to contribute and thrive at work, and the critical linchpin is having an understanding manager.

“I’m now the Carer’s Network Lead at work, though it’s early days and very much taking me out of my comfort zone. You can’t get more junior than my role at the Met Office – I’m an apprentice – but to have that opportunity to support other carers is fantastic. The worst thing about Evie’s diagnosis was that feeling of being a carer and being alone. I don’t want that to happen to any other carer in my office. I want to share the support I’ve received so other people can experience it too. That way you can grow awareness of why carer support is important, demonstrate positive examples and keep making the case.

“I spoke at this year’s Carers UK State of Caring Conference about my caring experience, and what really struck me was what Baroness Pitkeathley said about the balance between passion and pragmatism. That was really powerful, and it’s where my head and heart is at right now. It’s about little steps and thinking about what you can do over a long period of time. It’s being in it for the long haul.”