Congenital Heart Defects – how a supportive employer makes all the difference

By Nicola Holt 


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.

Business Disability Forum. Marketing photos

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.

Workplace adaptations

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.

For more information or to visit the Fujitsu Responsible Business blog – visit: http://blog.uk.fujitsu.com/category/responsible-business/#.VsNDyXSLReU 

“Trust me, I’m a doctor” – what do your line managers do when they receive a fit note?

By Christopher Watkins


File it away and hope it sorts itself out? Panic and phone HR? Or, exactly what it tells them to do?

Fit notes, or ‘Statements of Fitness for Work’ (for those with too much time on their hands) are a potentially invaluable tool in supporting people with disabilities or long-term physical or mental health conditions, but only if they are used appropriately by the managers that receive them. None of the reactions mentioned above are particularly useful to the employer but are all too common in some organisations, particularly in environments where line managers often have responsibility for large teams with high turnover.

Sometimes they’re just ignored – or, if a colleague’s absence is related to a disability or long-term condition, managers can be nervous to get involved and sickness absence can be left unmanaged to continue indefinitely, often on full pay. This is costly for the employer and of no benefit to the employee, whose employment prospects can be damaged as they lose the opportunity to pursue their career with some simple workplace adjustments.

Two people having a conversation at a desk

Sometimes managers just panic and phone HR. This is probably the least legally risky approach, but can put unnecessary pressure on often overworked HR service centres handling relatively straightforward queries.

However, it is perhaps most unhelpful for line managers to simply take everything written on the fit note as ‘gospel’, following the advice without further consideration, sometimes to the detriment of both the employee and employer.

In the most concerning cases, if an employee is being repeatedly signed off sick by their GP for stress, the line manager’s reaction can be to refuse to let them work. If the employee’s stress is related to factors outside of work, however, being prevented from working can exasperate the situation, leading to unnecessary sickness absence despite the employee feeling they were able (and continually asking to) work. This can be a highly stressful – and expensive – situation for all involved, and highlights the potential damage that can be caused by a last-minute tick-box and barely legible scrawl from an over-worked GP on her last appointment before lunch (and yes, believe it or not, over 80% of fit notes are still handwritten in 2015, five years after they were introduced as the efficient digital alternative to their predecessor[1]).

In such situations, the problem is not that the GP is wrong; indeed, there may be sensible health and wellbeing reasons behind the employee being unable to work. The danger lies where line managers take the advice on the fit note – advice written to the employee – as binding rules that they needed to follow, rather than useful medical guidance to discuss with the employee. A conversation with the employee, the GP and possibly a second opinion from an Occupational Health advisor can improve understanding of the reasons behind the absence, helping the employee back to work as quickly and supportively as possible, and saving the business considerable expense and legal risk in the process.

Deeper still, perhaps the issue is that we can’t know how often this is happening as the problem itself is that these issues aren’t escalated or recorded until things start to go seriously wrong. One can imagine many more cases where an employee with a long-term health condition or disability isn’t able to receive the support they need because (at least for the 20% of fit notes produced digitally), ‘computer says no’.

There’s been some fascinating research in recent months by the Institute of Occupational Safety and Health (IOSH) and the University of Nottingham into this area with some helpful recommendations; the key message to me being that GPs complain that employers don’t act on their advice while employers complain the GPs don’t give them any useful information[2].

It may not be a solution, but surely a starting point here is to get GPs and employers talking to each other. Particularly with the advent of the government’s Fit for Work service, this is likely to only grow as an issue for employers as the quantity – and hopefully quality – of medical advice landing on managers’ desks increases. Like the introduction of fit notes in 2010, this is a potentially very useful and cost-effective tool if managers are properly briefed on how to use this information. If not, conflicting policies and advice from different sources may quickly prove counter-productive.

What measures have you taken to prepare your policies and inform your line managers?

For more information on managing sickness absence and disability visit: http://businessdisabilityforum.org.uk/advice-and-publications/publications/line-manager-guide-attendance-management/

You can talk to Christopher at christopherw@businessdisabilityforum.org.uk or Tweet him at @chrispydubbs


[1] Nottingham University research ‘Getting the best from the fitnote’ (2015), pp. 19 (http://www.iosh.co.uk/~/media/Documents/Books%20and%20resources/Published%20research/Getting%20the%20best%20from%20the%20fit%20note.pdf?la=en) accessed 18 August 2015

[2] http://www.iosh.co.uk/fitnote

Stat of the day: Long-term sickness absence in the UK

By Angela Matthews

On Friday last week, the Department for Work and Pensions (DWP) released statistics from the Labour Force Survey on long-term sickness absence in Great Britain and the UK between October 2010 and September 2013. Some key findings are as follows:

(Note: “Long-term” sickness absence is defined as being more than four weeks.)

General In Great Britain there were 960,000 sickness absences between October 2010 and September 2013.
Disability 52 per cent of long-term absentees had a disability. The data is not broken down by type of disability.
Number of health conditions Absentees who do not have a long-term health condition had the largest long-term absence percentage – 38 per cent. 34 per cent of absentees had two long-term health conditions, and 29 per cent had one long-term health condition.
Type of health conditions 33 per cent of long-term absentees were on long-term sickness absence due to musculoskeletal conditions; 20 per cent due to mental health conditions; and further 48 per cent had other conditions which are not specified (and this also includes the 2 per cent of absentees who did not indicate whether or not they had a disability or health condition).
Age The age groups with the largest amount of sickness absentees in the UK overall were 40-49 (25 per cent) and 50-64 (42 per cent). The age group with the lowest amount of absentees was 65 and over (3 per cent).
Region The north-west and south-east regions had the highest amount of long-term absentees – both 12 per cent. This amounts to 120,000 absences for each of these two regions.
Industry The highest number of long-term absentees in the UK work in public administration, education or health (41 per cent) and in distribution, hotels, or restaurants (17 per cent). The lowest number work in the energy and water sector (2 per cent).

The DWP do warn in this analysis that someone’s health condition may not necessarily be the cause of their absence – and this is important to remember. In addition, the way an organisation approaches managing absences and the quality of the adjustments procedure(s) that they have in place can (but not always) be crucial to whether an employee can be at work or not. Flexibility (such as, for example, considering adjusted hours, working from home, or adjusted duties) can also sometimes be a huge contributor to someone continuing to work.

You can find the data here (Excel spreadsheet) (Link: https://www.gov.uk/government/publications/long-term-sickness-absence)

Stat of the day: Economic activity of the long and shot-term sick

By Angela Matthews

The latest Labour Market Statistics have been released by the Office for National Statistics this morning. The data shows that 84,000 less people are economically inactive due to long-term sickness. Economic inactivity due to short-term sickness, however, has risen by 22,000. A ‘wave’ illustration of the trends since 2011 looks like this:

Line graph showing the number of long-term and temporary sick between 2011 and 2013

Stat of the day: Labour Market Statistics – May to July 2013

By Angela Matthews

This quarter’s Labour Market Statistics have been released this morning and there’s a little bit of good news. The figures are for May-July 2013.

There are 42,000 less people economically inactive due to long-term sickness compared with the figure for February to April 2013. This gives a percentage of 22.3 per cent of people who are currently economically inactive due to long-term sickness – a total of 1,994,000 people.

The figure has fluctuated up and down slightly each quarter but has always – since May 2011 – stayed within the region of the 2-million-and-something. Today’s stats release is the first time since then that the figure has dropped below 2 million.