The jobs market when you’re a ‘first generation’ middle-aged heart patient

“Funny looking pic, isn’t it? The above photo is my aorta, mid-operation in 2008, as a truly wonderful team at Leeds General Infirmary battled to save my life.

“Not my first heart surgery, but definitely my most dramatic and frightening.

“I’ve been involved with all sorts of heart support organisations over the last 29 years, since I was first told I’d been born with a heart condition and had somehow managed to scrape through to the ripe old age of 22 before anyone noticed.

“Last month, I met up with Lucy McMahon from the wonderful organisation that is Children’s Heart Surgery Fund (CHSF) in Leeds. I’ve worked with CHSF on and off for the past decade or so. I was a proud marcher with their ‘Save Our Surgery’ campaign, and have attended meetings with their patient panel. We had a chat about what adult patients need in terms of support. Because, very fortunately, those children who are cared for and operated on by the team in Leeds, now grow into adults with mortgages and kids and worries about the price of potatoes.

“You see, when I came into this world, children with poorly hearts didn’t tend to get past childhood. But, with the marvels in medicine, I find myself in a bit of a strange category, as the first generation of congenital heart disease patients to be cracking on a bit. But with that comes a unique problem – there is no one to lead the way. No one to say, “well, this is how I coped with…”. And life throws up some things that you’ve just never really thought about.

“Two months ago, I was made redundant from my job. A job I loved and was very good at and hoped to see me through until pension time. It also came a year after a divorce which saw me living on my own and being the sole breadwinner/bill-payer for the first time in 30 years. My company had gone through the whole consultation process, so I’d had a good 10 weeks to start looking around for work. I have three decades of work experience and qualifications coming out of my ears, so I was fairly confident I’d have a few interviews under my belt by the time I left work. Er…

“Well, I’ve found myself in my second month out of work, surrounded by person specifications and key criteria, but not much else. The reality has hit that I’m 51 (yes, I know, my aorta doesn’t look a day over 40!), on my own with a mortgage and more limited prospects than I’d originally thought. And so, last month, my conversation with Lucy turned to the added factors you have to consider in this situation, when you’re living with a ‘life limiting’ condition.

“First, the job limitations. With fewer prospects in my experience field than I thought, I could just get something temporary to see me through… as long as you don’t need to lift (so no shelf-stacking at Aldi); be outdoors in extreme temperatures (lollipop lady’s out then); or exert yourself on a regular basis (herding sheep not an option). The field becomes quite narrow.

“Secondly, the help for disabled people. Yes, heart conditions come under the definition for disability, so there’s always PIP to support your income in the meantime. Er, nope. Not for a lot of us anyway. The list of things I can’t do (my garden, carry my own shopping, lift a hoover upstairs) don’t really come into the eligibility criteria. My shopping is delivered by Morrisons at a time I know my son will be here to carry it through to the kitchen for me. But, like I said, these kids grow up and he won’t be able to clear his schedule forever. So, no financial support there then. A lot of invisible disabilities suffer the same fate I’m afraid.

“Thirdly, redundancy insurance – surely, I’d taken that out, right? Well yes, I tried when I moved into my house. But since the pandemic, redundancy cover now has to be taken with life insurance – which can be difficult or, at best, expensive with a ‘life limiting’ condition.

“So, what do you do, when in middle-age you find yourself on the employment scrapheap with a pile of personal statements to write with a tiny ‘reply rate per hours spent’ ratio? Well, that’s where your heart warrior comes in. Because we CHD patients have literally fought for life itself. We do what we’ve always done – we have a little mope, then we crack on. Because we know that the indomitable will it takes to actually get to middle-age is what will make us the perfect employee for some lucky soul out there – grit, determination, and the ability to battle the odds. They should be applying to have us!

“We may be the first generation, but we’ll have a good go at shaping things for the ones to come.”

“Although we’re called ‘Children’s Heart Surgery Fund’, our support doesn’t stop when patients grow up. We’re here for everyone living with congenital heart disease in our region – whether they’re just starting school, navigating work and family life, or are well into adulthood.

 

“No matter your age, you’re part of our heart community. Please reach out if there’s anything you feel we could help with, and we’ll do our best to signpost you to the right support.”

 

— Lucy, CHSF Family & Youth Support Worker

Louise Gillard is an adult with congenital heart disease

MSET; Specialist in SEND education; PGCE in Lifelong Learning; service management