MS Patients' Careers Cut Short Due To Lack Of Support And Awareness, UK

If UK employer awareness about multiple sclerosis (MS) were improved, and more coordinated action were put into practice, most patients with MS who want to and are able to work would continue doing so. Not only would this improve their quality of life and independence, but it would also reduce the country’s MS-related welfare bill, which currently stands at £66.7m – MS patients on average miss out on 18 years of their working lives.

This is the theme of a new report issued by The Work Foundation titled “Ready to work: Meeting the employment and career aspirations of people with multiple sclerosis”.

The report’s call for action is backed by Dame Carol Black and several MS charities. The report explains how doctors, other healthcare professionals, employers and government could address this unnecessary loss of talent and waste of resources.

If the 18-year loss in the working lives of people with MS could be eliminated, there would be benefits for health care services as well as the patients themselves, the authors explained. Employers would save on redundancy and recruitment expenses, as well as gaining from the retention of experienced employees. The government would gain from more income tax revenue.

The authors found that employers have little understanding of MS. They also report that a considerable number of people with MS want to continue working. One of the complications of employer ignorance regarding MS is that the patient is reluctant to tell them about their condition. Such interventions as flexible working time and alterations to the workplace are missed out if the employer is never told.

The authors interviewed employers, health professionals and working patients. They urge politicians, local authorities, employers and healthcare professionals to take a more flexible and understanding approach when considering the careers of individuals with MS who want to continue working.

Stephen Bevan, lead author, said:

“The UK is not doing enough to support people with MS to stay in work. At present, 44% of people with MS retire early – many more than the European average of 35%. Work can have positive effects on health and wellbeing, while keeping employees on would boost the economy through benefits savings and increased income tax. Employees may not ask for assistance at work due to fear of discrimination and potential job loss, all the more so during difficult economic times – and such fears may not be unfounded.

To get support, it is important for employees with MS to inform their employers early on; however, this self-advocacy must be met with a good understanding of the disease, particularly its unseen symptoms and fluctuating nature.”

National Director for Work and Health, Dame Carol Black, said:

“I hope that its messages about the importance of work to people with chronic conditions will be heard by employers and healthcare professionals. Work is such an important aspect of life because it helps people retain their self-confidence and a sense of being a productive member of society. Supporting people through many health conditions and keeping them in their jobs is both a more sensitive and a more cost-effective way of handling absence from work than absorbing the substantial costs of redundancy and recruitment.”

Stephen Lloyd MP, from the Work and Pensions Select Committee, said:

“Employment is a hugely important life factor and for many people it is a crucial part of their identity. It is essential that a complex condition such as MS is properly understood by employers and policymakers in the UK to allow the many people with MS who want to work to do so. As the report demonstrates, allowing people to stay in work longer will also bring wider economic benefits.”

The UK government should maintain the Access to Work scheme, the report urges. As eligibility criteria for disability allowance becomes tighter, some MS patients may lose the support they so desperately need. The assessment process does not fully encompass the nature of MS, which is unpredictable and tends to have fluctuating symptoms.

MS is typically a progressively disabling disease with episodes of remission and relapses. Fatigue, writing difficulties, and problems with balance or walking can sometimes interfere with the patient’s ability to work. There may occasionally be difficulties with memory and/or concentration. The changeable nature of MS makes it a difficult condition for employers to understand.