Work, MS and you
If you've been diagnosed with MS, you're the same person the day after diagnosis as you were the day before. You still have your skills and experience.
But the symptoms caused by MS can vary and fluctuate over time and this can be a challenge at work. Some people find no need for any changes to their job or working pattern; others do benefit from simple adjustments.
Don’t rush into a decision
Immediately after a diagnosis or a relapse can be an uncertain time, as you may still be coming to terms with your diagnosis or new symptoms. Any decisions you make at this time – such as whether to give up work, or tell your employer – may not be the right ones for you in the long term.
Instead, you may want to give yourself time to think and adapt to your situation. You may find it helps to talk through your options with someone you trust, such as a family member, friend, or health care professional.
Find out more
Many people with MS, particularly those who have just been diagnosed, are concerned about telling their employer.
Do I have to tell my employer?
Most people with MS don’t have to tell their employer about their diagnosis. However, you must tell your employer about your MS if:
- you work in the armed forces
- your MS may affect health and safety in the workplace
- you drive for your job and any of the following are true:
- You’ve had any restrictions placed on your licence because of your MS
- You drive vehicles that you need a special licence for – such as Heavy Goods Vehicle (HGV) or taxi
- You’re covered by your employer’s insurance while driving
- Your MS may affect your ability to drive safely.
Should I tell my employer, even if I don’t have to?
If you need any support at work – such as reasonable adjustments or time off for appointments – you may decide to tell them.
Even if you don’t need any support, you may still want to tell them so they’re aware in case things change in the future. This can help to avoid any misunderstanding if any of your symptoms – particularly hidden symptoms such as fatigue – start to affect you at work.
You may be worried about how your employer will react when you tell them about your MS. But research has found that people with MS who tell their employer about their diagnosis are more likely to remain employed, and to stay in work for longer, than those who don’t.
Telling your employer
How you choose to tell your employer is up to you. It might depend on what you do, where you work and your relationship with your employer.
You might choose to have an informal chat with your employer, or you might make it a more formal meeting.
However you tell them, it helps to prepare. Things you might want to talk about include:
- the medical treatment and support you’re getting
- how your MS might affect you at work
- any support or reasonable adjustments you might need
- a reassurance that you are committed to your job – having MS doesn’t change your skills or experience
When you tell your employer, you may want to write down what you discussed and send it to them afterwards. That way you have a record of when you first told them about your MS, and what you told them.
The Telling your employer – decision sheet includes questions you may want to ask yourself, or things you want to consider before deciding to tell your employer about your MS.
Shift MS has produced a short film about the challenges of disclosing an MS diagnosis at work.
You don’t have to tell the other people you work with about your MS – but you might want to. For example, you might need their cooperation if your workplace agrees to make some changes to help you.
If you do decide to tell them, remember that they may not react in the way you expect or want them to. You may need to remind them to focus on you and what you can do, rather than the MS.
Remember that your employer isn’t allowed to tell your colleagues about your MS unless you have said it’s OK for them to do so.
If your MS is making it harder for you to do your job, there is support available.
In order to access this support, you need to have told your employer about your MS. If you haven’t, this will limit the amount of support you can get.
A reasonable adjustment is a change, perhaps to your job or your working environment, that your employer has to make to avoid you being put at a disadvantage compared to a non-disabled person.
Your right to ask for reasonable adjustments is part of the Equality Act and in Northern Ireland the Disability Discrimination Act. There’s no limit to the number of reasonable adjustments you can ask for, nor to the number of times you can ask for them.
Your employer can’t ask you to pay for any reasonable adjustments. If funding is needed, it may be available through the Access to Work service.
What kinds of reasonable adjustment can I ask for?
This depends on what you do, and how your MS affects you. Some examples of reasonable adjustments that other people with MS have asked for include:
- more breaks
- somewhere to rest for short periods during the working day
- a chair or stool to sit on
- flexible or reduced working hours
- working from home
Our decision sheet, Understanding your work situation, can help you to think about the different aspects of your job, and where you might need reasonable adjustments.
When deciding whether an adjustment you’ve asked for is reasonable, there are various things your employer can take into account. These include:
- how effective it will be
- how much it costs
- how feasible it is
- what the business does
- the size of the business
- what resources (money, equipment and people) the business has
- how long you have worked or are likely to work there
You can use the Workplace Adjustment Agreement to record any reasonable adjustments you agree with your employer.
If an adjustment you ask for costs more than is reasonable for your employer to pay, you may be able to get funding for it through Access to Work.
Access to Work
Access to Work is a government-funded service that offers financial support to pay for any extra support or equipment you need as a result of your MS in order to be able to do your job.
An Access to Work adviser works with you and your employer to see what help you need at work, and how best to meet that need.
What kinds of things will Access to Work pay for?
Access to Work can help pay for any extra equipment or support you need in order to be able to do your job. This can include:
- adaptations to the equipment you use
- special equipment
- fares to work if you can’t use public transport or drive
- a support worker or job coach to help you in your workplace
- disability awareness training for your colleagues
- a communicator at a job interview
- the cost of moving your equipment if you change location or job
What you get will depend on your circumstances – there’s no set limit. It doesn’t affect any other financial support you may get, and you won’t have to pay it back.
Access to Work can’t be used to pay for any equipment that you would normally need in order to do your job. Nor can it be used to pay for reasonable adjustments, unless they cost more than would be reasonable for your employer to pay.
There’s information about Access to Work (including contact information) on the GOV.uk website
The Department for Work and Pensions has also produced a short video, with signing and subtitles, to help explain Access to Work.
Occupational health looks at health and work, and how one affects the other. You might find it helpful to see an occupational health doctor or nurse when you start a new job, or if you have had a relapse.
Some companies have an occupational health department or access to an occupational health service. Employees can also get occupational health support provided by the Fit for Work advice line in England and Wales on 0800 032 6235. In Scotland you can contact Working Health Services Scotland
Occupational Health advice is also available through the NHS:
Time off work
Having MS can mean that you need to take extra time off work – for example, to attend appointments.
Time off for appointments
You don’t have an automatic right to time off for appointments, but you can ask for time off to attend medical appointments related to your MS as one of your reasonable adjustments.
If your employer has a disability leave policy, time off for appointments may be included in the policy.
Sick leave and disability leave
If you have to take time off sick because of your MS, you may want to talk to your employer about how they record this time off. For example, as a reasonable adjustment you could ask for any time off you’ve had relating to your MS to be discounted when adding up how much sick leave you’ve taken.
If your employer has a disability leave policy and your absence is planned – for example, to attend a scheduled appointment – this may be recorded as disability leave.
Your employer may be discriminating against you if they treat you unfairly because of any time off you’ve had relating to your MS.
Return to work
You may want to meet with your employer before you go back to work, particularly if you’re dealing with new symptoms. You can use this time to talk through any new reasonable adjustments you will need, and to develop a plan for how you are going to return to your job.
You may find it helps to return to work gradually, in phased stages. This means you would start out doing fewer hours each week than you normally do, and build it up over a few weeks until you’re back up to your normal hours.
Our Return to work after time off resource can help you plan going back in after you’ve been off work for a few weeks.
Looking for work
If you’re looking for work you may be worried about whether your MS will affect your chances of finding a job. In this section we cover some of the key questions you might have about MS and job hunting.
What is an employer allowed to ask?
A potential employer can ask you about disability during the recruitment process. But they can only ask you for one of the following reasons:
- For equal opportunities monitoring. This should be done anonymously, as part of the initial application process.
- To find out if you need any extra help or if you have any access requirements during the recruitment process.
- To check that you can carry out all the vital tasks of the role (taking into account any reasonable adjustments that could be made).
If they ask, do I have to tell them about my MS?
It depends on when and how you’re asked.
Before you are offered a job, they can only ask you for one of the reasons outlined above. If they ask you for any other reason, or if they ask you any other questions about your health, it may be unlawful. If so, you wouldn’t have to answer.
After you have been offered a job, they can ask questions about your health. How you respond to the questions will depend on how they’re worded.
Should I tell them, even if I don’t have to?
This is something that many people with MS have asked when job hunting. They worry that if they do tell a possible employer about their MS, they will be less likely to be offered a job. For this reason, many people with MS choose to wait until they have been offered a job before telling a future employer about their MS.
How do I find disability-friendly employers?
If you know you will need reasonable adjustments or time off for appointments, finding an employer who will be supportive of your needs may be important to you.
It can be difficult to know what the culture of an organisation is like before you start working there, but there are some ways to tell if it may be more disability friendly.
- Look for the disability confident logo on job ads. This means the employer has made a commitment to recruiting and maintaining disabled staff.
- If you can get any information about employee benefits, check to see if they include a disability leave policy.
- Check if they’re a member of the Business Disability Forum.
This list isn’t exhaustive. There are many people with MS who work for companies that aren’t members of one of these schemes, who still get the support they need at work.
Changing or giving up work
Even with reasonable adjustments in place, you may no longer be able to do your current job. This doesn’t mean you automatically have to give up working. There are a number of different options that you may want to explore before reaching that decision.
Reducing your hours
You may find that you can actually continue in your current job if you reduce your hours.
Before deciding to reduce your hours, there are some questions you may want to think about:
- How much money do I need, and will I have enough if I reduce my hours?
- If I reduce my hours, will my workload be reduced too? Or will I have to do the same amount of work in fewer hours?
- Will reducing my hours have any impact on my pension?
- Can I still meet the demands of my job on reduced hours?
The Money Advice Service has an online budget planner that may help you to answer these questions.
Moving to another position
Another option may be to move to another position within the same organisation. For example, if your job involves a lot of manual work you may want to move to a desk job.
Whether you can do this will depend on a number of things, such as the size of the organisation you work for, whether there are any other jobs you could do, and your particular skills and experience.
You can use our strengths and weaknesses form to help you to work out what you do well, and what opportunities you may have.
If your MS means you are no longer able to do the type of work you have been doing, but you feel you are still able to work, another option might be to retrain.
You can get help with deciding what you would like to do, as well as working out what training you would need to do and how to pay for it, from the careers advice service for your nation
- National Careers Service England
- Careers Wales
- My World of Work (Scotland)
- Careers Service Northern Ireland
If you are claiming out-of-work benefits, you can also get support from a Disability Employment Advisor at your local Jobcentre Plus to help you find a new job or gain new skills. These don’t exist in Northern Ireland but you can try Workable (NI).
Self-employment can be an option for some people with MS, as it gives them the flexibility to plan their work around their health. However, it’s not without its risks. If you choose to go self-employed you’ll need to be sure you can keep things going if your MS means you’re unable to work.
There are a number of places you can get support to help you to go self-employed. Although not all of them will be geared up to helping people with long-term conditions. These include:
- England - National Enterprise Network
- Scotland - Business Gateway
- Northern Ireland - NI Business Info
- Wales - Business Wales
- Disabled Entrepreneurs Network
- Start Up Loans
An adviser from one of these organisations can help you to find funding. They can also help you with business planning, including building in flexibility so that you can keep the business going if you’re unable to work.
If you're getting certain benefits, you may also be able to claim New Enterprise Allowance to help you start your own business.
You may have reached the stage where your MS means you can no longer work at all.
Ill-health retirement is something you should only consider after you’ve explored all other possible options. You may want to talk it through with someone – such as your trade union representative (if you’re a member) or an occupational health adviser – before making any decisions.
If you’ve paid into a private pension scheme, you may qualify to take your pension early for ill-health reasons. You may also be able to claim benefits such as Employment and Support Allowance. You won’t be able to claim your state pension until you reach state pension age.
You’re protected against discrimination because of your MS by the Equality Act (if you live in England, Scotland or Wales) and the Disability Discrimination Act (if you live in Northern Ireland). MS is a named condition in both acts. This means you’re protected from the moment of diagnosis – it doesn’t depend on how you’re affected.
Both acts make it illegal to discriminate in all aspects of employment – in recruitment, selection, training, promotion, redundancy and dismissal.
The types of discrimination you’re protected against are:
- Harassment – this is when an employer allows (or carries out themselves) any behaviour that violates your dignity, or creates a hostile working environment
- Direct discrimination – this is when you’re treated worse than someone else, because of your MS
- Indirect discrimination – this is when the way an organisation or service works is unfair (does not apply in Northern Ireland)
- Discrimination arising from a disability (England, Scotland and Wales)/ Disability related discrimination (Northern Ireland) – this is when you are discriminated against because of something connected to your MS, but not because of the MS itself
- Disability discrimination by association - the Equality Act also protects people who have an association with a disabled person – for example, a partner or a carer. They can bring a claim for direct discrimination or harassment (does not apply in Northern Ireland).
- Victimisation - this is when you're treated badly because you make a claim or complain about discrimination.
All employees – regardless of whether they have a health condition or are disabled – have the right to confidentiality at work.
This means that if you’ve told your employer you have MS, they are not allowed to tell anyone else unless you say they can.
If you need to make phone calls, or use email or the internet for anything in relation to your MS while you’re at work – for example, to book an appointment – you may be concerned about your right to privacy.
In general, your employer is allowed to monitor the general internet, email and phone usage of all employees, as long as they tell you what they’re doing and why. However, they should not be monitoring any communication that is clearly personal, unless they have a good reason for doing so.
You may want to talk to your employer if you have any concerns about privacy at work.
Where to go for further help
Finding the right people to support you in managing your MS at work can make a real difference – but it’s not always obvious where to look for them. We’ve listed below some of the people who may be able to help you.
- Occupational therapist
- Human resources
- Line manager
- Access to Work adviser
- Occupational health
- Disability employment adviser
- Union rep, or supportive colleague if you’re not a union member
- MS nurse
- Social worker
What to do if you're not being treated fairly
If you feel you’re not being treated fairly, there is usually something you can do about it.
Not everyone with MS has a totally positive experience at work. It could be that your line manager has started treating you differently since you told them about your diagnosis. Or perhaps your colleagues think you’re getting preferential treatment, or that you’re not making a full contribution to the team effort.
Whatever the situation, if you’re being treated unfairly at work there is usually something you can do about it.
The steps outlined below follow the guidance laid out in the Acas Code of Practice – Disciplinary and Grievance Procedures
- Talk informally – whatever your concerns, you should discuss them with the people involved.
- Raise a grievance – there's no time limit within which you must raise a grievance.
- Employment or industrial tribunal - if you’re not happy with the result of the grievance, or if you don’t get a response, you can issue a claim for disability discrimination in an employment tribunal or, in Northern Ireland, an industrial tribunal. If you want to make a claim in an employment tribunal, you have to do this within three months of the act that you feel was a failure to do something for you.
Looking for work
In order to prove you’ve been discriminated against while looking for work, you would need strong evidence of the reason you did not get the job – which may be hard to get.
If you feel you can get the evidence, the process you would follow is the same as if you were in work.
My boss is telling me I can no longer do my job. What can I do?
If you feel you can still do your job, but your employer is telling you that you can’t, you may be able to challenge them.
You would need to show that there are reasonable adjustments they haven’t put in place that would mean you could still do your job. You may need to provide evidence, such as an occupational health report, to show that the reasonable adjustments would help.
If your employer dismisses you without having made all reasonable adjustments, this may be discrimination. In this case, you would be entitled to take action against your employer.
How can I access legal advice to help with these issues?
We offer a free, confidential legal advice service.
Or download Work and MS: an employee's guide for detailed information on your rights.
Having MS at work is enough
Our MS: Enough campaign calls for better support for people with MS at work.