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People with MS leaving work challenged by lack of support

Katie Hall

For some people with MS, the difficult decision to leave work is being made harder by a lack of support, according to our new research.

We know many people with MS want to stay in work for as long as they can. But for some, this becomes impossible. Leaving work has a massive impact on their lives. We want to make sure people with MS have the support they need if they decide to leave work, as well as to help them stay in employment.

How and why people leave work

Our researchers looked into how and why some people with MS decided to leave work, what this meant for their lives, and what support they received. They spoke to 16 people with MS, as well as looking at our existing knowledge and data.

While in some cases, people with MS had left work mainly as a result of their symptoms, for too many, lack of support from employers and colleagues played a role.

Thinking about or deciding to leave work was stressful and worrying. Almost no-one we spoke to had much – if any – support. This included support to stay in work, think about leaving, or adjust when they did stop work.

Worries about money, identity and isolation

Deciding to leave work was a long and difficult decision. Those who had already left work had often done so reluctantly. Those who were thinking about leaving work were worried about things like loss of income, purpose and social life. Some people had struggled with low mood after leaving work. Others found it hard to make ends meet.

Despite these problems, stopping work had come as a relief to some people. All the interviewees felt stopping work had or could reduce their fatigue and somewhat improve their physical wellbeing.

Support could make a difference

For the people we spoke to, support could have made their decision easier.

The support they most wanted included:

  • practical support to deal with symptoms at work
  • money management and help claiming benefits
  • emotional support

Counselling could have helped Sue

Sue (name has been changed) is in her late 40s and has progressive MS. She recently retired on health grounds. Her employer was supportive and had made changes to her work, but her MS symptoms worsened.

She began to find it hard to do her work because of cognitive symptoms and fatigue. She was very worried about stopping work – losing social contacts and structure in her life.

She got help from a charity, which provided information on finances and benefits – and gave personal advice. But she feels socially isolated and would like counselling and an advice service specifically for people who are retired on health grounds. She feels support should be available before people have to stop working.

We’re calling on the government to improve support

From diagnosis onwards, we want people with MS to able to access the employment support and information they need. Before Christmas, the UK Government published its plan to improve the working lives of people with health conditions and disabilities. This must include an understanding that some people with MS cannot work.

We’re calling on the government to improve support to help people with MS stay in work while they can and leave work well when they need to.

Do you need to talk to someone about MS and work? We partner with the Disability Law Service (DLS) to provide free, confidential advice to people living with MS. You can contact the service by telephone on 020 7791 9800 or by email [email protected] The DLS covers England and Wales. People across the UK can contact our MS Helpline for free on 0808 800 8000 or by emailing [email protected] for information and support.