It’s Congenital Heart Defect (CHD) Awareness week this week. These conditions tend to be overlooked in conversations about heart disease, so it’s a good chance to talk about how it can affect people, dispel some common myths; and share some ideas about how employers can make the lives of CHD sufferers a little easier.
Congenital defects start before birth, while the heart is still forming. They come in a variety of types. A hole in the heart is the most common, a condition which is easily fixed nowadays but just a few decades ago would have been debilitating and possibly fatal.
Modern medicine has come a very long way in a short space of time, so people with congenital heart defects have very high survival rates and, usually, a high standard of life. Valves can be replaced, blocked blood vessels can be opened with stents, heart rhythms can be paced, and whole hearts can be transplanted. Despite huge leaps in treatment and technology, a CHD requires lifelong care and often lifelong medication.
Living with a congenital heart defect
I was diagnosed with CHD when I was 4 and had surgery at 7. In 2014 my pulmonary valve began to fail, and I had surgery to replace it with a shiny new one. I also had a hole fixed, and a pacemaker fitted. As well as some of the more philosophical conclusions people draw when faced with a situation like that, it taught me that an efficient, well-prepared and compassionate employer is vital when you’re faced with a traumatic life event.
What would my employer think?
The last thing you need when you have a heart condition is stress. Work is one of the most common sources of stress at the best of times, and being ill is another one, so that’s an unfortunate combination.
Being told that you have a heart condition can come as a huge shock, and the necessity for invasive open-heart surgery is daunting. It’s important that an employer has processes in place to handle situations like this, and make information about those processes readily available. If it is, people can find out what to expect and plan ahead.
This is particularly important for sick pay. If the policy is clear and fair, it takes away a lot of the stress. If you’re lying in a hospital bed worrying about getting back to work, it’ll take you longer to recover.
My first thoughts, after the initial fear of being told I needed surgery, were about my job. How would they cope without me? Would they tolerate me being off for months? Would I get sick pay? If I didn’t, how would I pay my mortgage? And what about the ongoing care, months of appointments and tests? Because Fujitsu has policies for all of these it didn’t take me long to find out exactly what I needed to do, how much time I could take off, and what the pay situation was.
It’s also vital to create a supportive environment in which people feel comfortable talking about their health issues. It might seem like a very personal thing, but open communication is good for the business as well as the individual.
Friday afternoon, one hour’s notice
You don’t always get a lot of time to plan. I was phoned at 4pm on Friday and asked to go to the hospital for a pulmonary valve replacement the following Monday. An hour’s notice that I’d need around 3 months off.
Hospital timetables are complex and ever-shifting things and if a date comes up, you take it. Because I work in such a supportive environment, I was able to tell everyone what was going on ahead of time without any fear that I’d be judged. That enabled me to get a detailed plan into place so everyone knew what they needed to do and what work they’d be covering.
Even admitting that you have a heart problem is an issue for some people. It’s sometimes seen as a weakness, particularly if the person is in a high-profile, fast-paced job. As an employer, if you make it harder for people to be open about their condition, it’s going to be harder for everyone if one of your employees suddenly disappears for a few months.
The necessity for support doesn’t end with the surgery. In fact, that’s often the easy bit. Open heart surgery takes months to recover from. During that time there are all sorts of issues to manage – mobility is severely restricted, and the medication can make a quick return to work impossible.
Fujitsu sent me to see an occupational health expert as soon as I was well enough to get there. He helped me to identify the adaptations I needed. There’s an easy ordering process for anyone who could benefit from additional help whether it’s technology or a more comfortable chair. When you’ve had your rib cage opened a couple of times, comfort becomes very important!
Those processes meant that I didn’t have to worry about booking appointments or trying to get hold of equipment. If you put too much bureaucracy in the way, people won’t get the help that they need. And, of course, the law obliges employers to make reasonable adjustments to enable people to do their jobs effectively.
Even if a CHD sufferer isn’t having surgery there are adjustments that can be made. Are they expected to carry heavy equipment? That can be an issue with some conditions, as can climbing stairs.
I have a light-weight laptop which is easier for me to carry to meetings; and multiple charging cables so I can dot them around my various working locations. The small things really matter. Employers should all have a policy for providing these.
Returning to work
A phased return to work is crucial so there needs to be a policy in place to manage this. A day or two a week, or a couple of hours a day, maybe some time working from home. Different arrangements will work for different people and different conditions.
I went back to work part time. It was disorientating and difficult. The pain was tough, the painkillers were tough, but the most difficult aspect was just not knowing what was going on. I like to know what everyone is doing and when. I like to have a plan in my head so I can make sure everything gets done. My team handled everything amazingly, but it felt disorientating. They’d coped disturbingly well without me, and I felt like a surplus cog. It took me a few weeks to get back into the swing of things.
Most people who have invasive heart surgery need a lot of aftercare. Cardiac rehabilitation and physiotherapy appointments are usually necessary for several months, and the drug treatments go on for longer. Warfarin treatment means regular blood tests and is usually long-term or even life-long.
The most important thing in this whole process was my line manager. A supportive manager makes all the difference in the world. The bureaucracy was all handled in the background while I was off, he supported me before the process and helped me plan, and all of the communication I received was supportive and helpful.
I was eased back into work with the help of all the people around me, and never felt pushed to do anything beyond my comfort zone. There’s no doubt the attitude of my manager and colleagues helped me to recover more quickly.
Friends and fellow CHD patient stories
I know I’ve been very lucky. A quick survey of friends and fellow CHD patients threw up a disturbing selection of stories from people with less supportive employers. Some were sent dozens of letters asking for updates and sick notes, some were pushed into returning to work when they weren’t ready and became ill again.
Some were passed over for promotion and believed it to be entirely because they were seen as weak, or a liability. Some even lost their jobs because their employers didn’t want to employ people who would need time off for treatment; or quit because they couldn’t cope with the stress of all the bureaucracy. All of their employers have lost out. They’ve let people go who were hard-working, dedicated and capable, just because they didn’t have the right support and processes in place.
I think what’s most impressive about the Fujitsu approach is the genuine desire to improve, continuously. The SEED group is there for long term support. Communication, training and processes are being analysed and improved to make them more effective. A happy and healthy workforce is recognised as being good for business, and the people improving these processes really care.
What could you do differently at work to help people with long-term health conditions?
Busting some myths around Congenital Heart Defects
- Congenital heart defects aren’t lifestyle related. Staying healthy is a good idea but it doesn’t cause the defects. They’re often genetic.
- A cure is difficult. Many people need repeated surgery throughout their lives and rely on drugs to stay healthy. Sometimes people need surgery every ten years or so, particularly if valves need replacing.
- It’s not just about the heart. Chronic conditions like this are associated with pain, anxiety and depression so it’s important to take a holistic view
- It doesn’t affect everyone in the same way. Some people will struggle to climb stairs and get out of breath easily. Others can climb mountains. It depends on the type and severity of the condition.
- It’s not that rare. It’s the most common congenital defect, affecting almost 1% of the population
- You can’t tell when someone has a heart condition. Just because someone looks healthy doesn’t mean that they are, and a lot of the issues associated with CHD are hidden. You can sometimes spot us by the impressive selection of scars though!
- Heart problems affect people of every age. CHD is a congenital condition, it’s there before birth and throughout life.