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"It was important I accepted that I was a carer": William's story for Carers Week 2021

William works for British Gas and leads the carers network in the Edinburgh office.

I'm not sure where to begin which is unusual for me. Back in 2006 we found out that we were having a second child and were both over the moon. Our joy was to be shattered early on, as during the scans we found out there was an anomaly with the heart and we were offered the chance to end the pregnancy. As a couple we decided to continue and we stopped further scans until our second child was born on a stormy winter’s night in January 2007. I was over the moon with becoming a dad for the second time, and he looked perfect weighing in at 7lb 13.5. I thought, could the doctors be wrong?

Life was to change very rapidly. In the first few hours of his life he quickly showed signs of struggling to breathe and feed. He was taken up to ICU by a male midwife, Kenny, for further tests and compared to other babies on the unit he was huge. The learning curve for us was steep as we started to learn medical terms I had never heard of. We had all sorts of emotions going through our minds, but we wanted to be home as a family.

His condition required further tests and he was taken to Sick Kids in Edinburgh, where he was affectionately known as the conundrum. We still had not been able to give him a name, both of us thinking maybe it was easier to let go of something that didn’t have a name.

William and FinlayHe was born with a congenital heart defect along with his heart on the wrong side of his body and lung defects. He was discharged after about a week in Sick Kids. We were home as a family together for the first time since he was born. This joy was short lived as we had a check-up at Sick Kids and found out Finlay had lost a third of his body weight and was struggling to breathe. Looking back now you can see the changes, but not at the time. He was taken into hospital immediately, despite being told by the midwife everything was okay that very morning.

When he was taken back into hospital, we were sat down and told to prepare for the worst. Not the news new parents want to hear. Things changed breath by breath and minute by minute and hour by hour. Tests were being carried out continuously, sometimes we were given good news and sometimes not.

By this time, I had used my two weeks paternity leave and some holidays that I had planned to spend time as a family to bond. I was not sick so the family GP would not sign me off, but the hospital GP would. There was no sign of getting home as things were getting worse. He was put onto a CPAP machine to help him breathe and to try and gain weight.

We decided that my wife would remain with our baby and our oldest would be supported by me as best I could and by our parents. I was trying really badly to balance parental care for my first son who was around 18 months as well as work full time (10-hour shift with a two hour commute), visiting Finlay in hospital and trying to keep the house running. Days would start at 6am and if I was lucky bed by 2am. I would drive home in tears with news of that day and get up and smile as if nothing was wrong and repeat again. A typical day would be: drop our oldest at nursery, travel to work, visit Finlay and my wife Ruth and catch up with the day’s events at the hospital and discuss the updates with doctors. The only time we were together in these months was when our first son ended up also in ICU with croup. By April 2007 following an operation Finlay could then return home and we could be a family together. Household bills started to come in, nursery child care costs, and the debt grew.

In the early days of Finlay, I never considered myself anything more than a dad. It was only after my son was rushed into hospital that I knew I needed some help. The carers network at British Gas was just being set up by Geoff and John. After much encouragement from Geoff, the carers rep at the time, I registered as a carer. Now, 14 years later, I am doing what Geoff started 14 years ago trying to continue to improve the network and promote the network to other carers and supporting staff. I would also like to thank SWAN UK for all the support they gave me and my family.

Since starting to work from home last March, life has been interesting. Appointments have been done over technology, which means very little travel time to hospital. Shielding has seen the family not being able to leave the house which resulted in being 24/7 with the person you care for. Not seeing other faces was difficult, we suffered a bereavement with the loss of my father-in-law and started to have to pick up my mother-in-law’s care on top of our son’s care. Being at home together has also brought other challenges; you start to notice each other’s habits. Imagine a holiday in a caravan for a week while it is raining and multiply it by 10.

In regard to work life balance, working from home has brought a lot of positives for me, for the first time in 14 years I could have an evening meal and breakfast with the family. I see the wider care needs of the family and my son. Yes, it is easy to log onto work, and I no longer have a daily three-hour commute, but my core hours in the call centre are fixed so I have less flexibility than others and I have seen my job role change as we adapt. But I am not as tired. On the challenging side, keeping a teen with ADHD quiet has not been easy. And the challenges of getting help and support during the lockdown has started to take its toll and show signs on the family. 

Without Carer’s Leave I would need to use holidays to attend key appointments. Fortunately, I get 10 days paid Carer’s Leave along with a further 10 days matched from my holidays. This means I can attend hospital appointments with my son without using all my holiday. I do not have to worry about having the holidays to get time off and can use them for family time.

As the carers rep for British Gas’s Edinburgh office, I help to try and identify with other carers and get them registered. I still speak to people who were like me at the start thinking of myself as a dad rather than a carer. It was important I accepted that I was a carer, and I am pleased 14 years later I get to help other people recognise their role.

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