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Careers of people with MS needlessly being cut short by 18 years

Tom Phillips

20 June 2011

Providing support for workers with multiple sclerosis (MS) would significantly reduce an annual welfare bill of £66.7m and prevent people from missing out on an average of 18 years of their working lives*. This is according to Ready to work: Meeting the employment and career aspirations of people with multiple sclerosis, a new report from The Work Foundation published next week (21 June). Dame Carol Black is joining MS charities and parliamentarians to support the report’s calls to action, which outline how the government, employers and healthcare professionals could address this needless loss.

The research shows how with greater employer awareness and more co-ordinated action, the majority of people with MS who are willing and able to work could be supported to do so. This would create significant government savings and improve the quality of life both for those affected and for their informal carers. Employers would also gain from the retention of experienced staff and from redundancy and recruitment savings.

The report shows that while many people with MS want to work, employers often have a poor understanding of the disease. This can leave people reluctant to inform their employers about their condition, with the consequence that they miss out on interventions such as flexible working and modifications to the workplace which can significantly improve their ability to stay in work.

Drawing on interviews with workers who have MS, their managers and health practitioners, the report urges employers, politicians, and healthcare professionals to adopt a flexible and more understanding attitude to the careers of people with MS who want to remain in work. The report sets out clear calls to action from leading parliamentarians and MS charities to help keep people with MS in employment and reduce the human and economic costs of this long-term condition.

Lead author Stephen Bevan 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.”

In the foreword, Dame Carol Black, National Director for Work and Health, welcomes the report, “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 he was looking forward to working with the MS community and The Work Foundation to implement the calls to action, adding, “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.”

In its calls to action, the report urges the government to maintain the Access to Work scheme and to recognise the impact of changes to the welfare system on individuals with MS. It stresses that recently tightened eligibility criteria for disability living allowance could deny some individuals the support they need, particularly as the assessment process may be too crude to encompass the disease’s unpredictable and fluctuating nature.

As the report highlights, MS can cause disability progressively over time and is characterised by episodic patterns with remissions or more acute needs during certain periods. Ability to work may be affected by physical symptoms such as fatigue and difficulties with writing, balance or walking, combined with cognitive symptoms affecting memory or concentration. The fact that many symptoms can be invisible and can worsen or improve rapidly means that MS can be a difficult condition for employers to understand.

The authors welcome the introduction of the Fit Note and its focus on the tasks individuals can perform and ways to support employees in their work. The report also calls on the government to support the role of specialist MS nurses and physiotherapists in coordinating care and workplace interventions, and of occupational health professionals in helping employers to accommodate the needs of workers with MS.

Ends


Notes to editors

£66.7m represents the average annual ESA bill due to lost working years, assuming a retirement age of 60.

Ready to work: Meeting the employment and career aspirations of people with multiple sclerosis
by Stephen Bevan, Ksenia Zheltoukhova, Robin McGee and Laura Blazey is available at www.theworkfoundation.com on publication and from the media team in advance.

Stephen Bevan and Ksenia Zheltoukhova are available for interviews, briefings and written commentary. The report was made possible by an unrestricted educational grant from Novartis Pharmaceuticals UK Ltd. The Work Foundation has retained full editorial control.

Report endorsements follow from MPs and the MS Society and MS Trust.

The Work Foundation is the leading independent authority on work and its future. It aims to improve the quality of working life and the effectiveness of organisations by equipping leaders, policymakers and opinion-formers with evidence, advice, new thinking and networks. In October 2010, Lancaster University acquired The Work Foundation, forming a new alliance that will enable both organisations to further enhance their impact.

Media enquiries:

Tom Phillips 020 7976 3554 tphillips@theworkfoundation.com


Anna Kharbanda 020 7976 3646 akharbanda@theworkfoundation.com


Report endorsements:

I am delighted to lend my support to the launch of ‘Ready to Work’, a report which highlights the important issue of the impact of MS on working life. Given the recent focus of the All Party Parliamentary Group for MS on the role of specialist nurses, it is striking that the report demonstrates their crucial role in coordinating workplace interventions, allowing people to stay in work for longer and lead more rewarding lives. Continued provision for these specialist posts is therefore vital.”

James Gray MP, Chair of the All Party Parliamentary Group for Multiple Sclerosis


I welcome The Work Foundation report on MS and work. 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 policy makers 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. I look forward to working with The Work Foundation and MS community to implement the calls to action highlighted in ‘Ready to Work’, encouraging more people with long term conditions to live more satisfying and rewarding lives.”

Stephen Lloyd MP, Member, Work and Pensions Select Committee

"MS is diagnosed classically in people aged between 25-35 when work is a very large part of their life and their future earning potential. This report shows clearly that people with MS lose an average of 18 working years and many drop out of employment very rapidly after their diagnosis. The report demonstrates how the stakeholders, namely employers, health professionals, policy makers and people with MS, can take action to improve this situation and the MS Trust would wholeheartedly endorse this approach."

Nicola Russell, Director of Services at the MS Trust

We’re delighted that The Work Foundation has chosen to focus on the important issue of how we can support people with MS to remain in work. The MS Society is committed to helping people with MS to live life to their full potential, and employment is a significant aspect of that. We hope that this work helps to further the debate and highlight how a broad range of stakeholders need to take action to ensure that those who want to and feel able to work are appropriately supported to do so.”

Dr Jayne Spink, Director of Policy and Research at the MS Society