Counting the cost of MS

Multiple sclerosis usually strikes at the time when sufferers are starting to forge their careers, clouding promising futures with fears of declining health, fatigue and immobility.

According to the MS Society, eight in ten will have stopped work completely within 15 years of diagnosis. But the charity believes that many could work for longer if employers were more understanding.

“Just because someone has MS does not mean they don’t have a great deal to contribute to the workplace,” says Michelle Mitchell, the MS Society’s chief executive. “MS diagnosis does not mean you are no longer an asset to your employer. It may be that reasonable adjustments need to be made, such as giving you flexible hours or a parking space near the front door.”

MS costs the economy £1.4 billion a year. Family members caring for loved ones and NHS treatments cost society £17,000 per person annually, but lost earnings boost this figure to £25,000.

Part of the problem is there is no definition of what constitutes the “reasonable adjustments” companies are required to make for disabled workers. Some with MS say they have been asked to take hospital appointments in their own time. This grey area may contribute to figures showing the UK is now lagging behind its European counterparts in caring for MS workers. Across Europe, 35 per cent of MS patients retire early, but in the UK this figure is 44 per cent.

MS diagnosis does not mean you are no longer an asset to your employer

A recent study in Liverpool and Cardiff also suggests that, despite the introduction of laws to protect disabled workers, such as the 1995 Disability Discrimination Act, the number of MS patients staying in work has remained static for the last 25 years.

Perry Moore, a clinical neuropsychologist at the Walton Centre NHS Foundation in Liverpool, who led the study, says people with MS sometimes stopped working because they felt they were letting their colleagues down by having time off.

“It is hard to know exactly what is happening in the UK and it depends very much on the individual, their health and their employer,” he says. “If you have a flexible job where you can sit down, take breaks, pace yourself and so on, then you can probably stay working for longer. But if you are in a manual, physical job, then this might be much harder. What we do know is that the best results come when specialists are involved who can assess the MS patient’s ability and also involve the employer, but this often does not happen.”

Dr Moore’s study, published in the journal Multiple Sclerosis, shows that of MS workers who reduced their hours, 61 per cent said this was due to fatigue, while 36 per cent cited cognitive difficulties.

An independent assessment of cognition could help many MS patients who felt they were no longer “up to the job”, says Dr Moore. Some may simply be losing confidence in their mental state when nothing is actually wrong. Other cognitive changes might be the result of poor sleep or pain that could also be treated, he adds.

One of the reasons employers struggle to understand MS is because it is an erratic disease. Attacks can be followed by relatively long periods of normal health and symptoms are unpredictable.

Clothing firm boss Henry Ettinger was diagnosed when he was 50, but has been able to continue working thanks to his treatment and technology.

“If it was 20 years ago, I wouldn’t have been able to continue, but now everything can be done from home on e-mail so I can have a nap each day,” says the 61 year old from London. “We used to travel a lot for business, but I can leave that to my wife as I struggle to walk far. Self-employment means I can cut down on what I do so, despite the difficulties, I try to just get on with it as I simply love working.”

Last month, a number of MS charities including the MS International Federation, highlighted problems facing workers, with films and campaigns in a bid to increase understanding among employers.

“Employers need to have the flexibility to allow people with MS to find their most productive time and pattern of work,” the campaign concludes.