Information for employers about Parkinson's

• Everyone's experience of Parkinson's is different, and not everyone will experience the same symptoms.
• How Parkinson's affects someone can change from day to day and even hour to hour. Symptoms that may be noticeable one day may not be a problem the next.
• People with Parkinson's need to take their medication at specific times and may need a break to do so. Medication is essential for controlling symptoms.
• If their treatment is carefully managed and they have the right support, people with Parkinson's can continue working for many years after their diagnosis.
• Not all Parkinson's symptoms are obvious. As well as difficulties with movement, people with Parkinson's may experience symptoms such as pain and tiredness.
• People with Parkinson's are the experts in how their condition affects them. The best way to find out what an employee living with Parkinson's needs, or how you can help them, is simply to ask.
• As an employer, you may not always feel sure about how to support an employee living with the condition. But there are things you can do to provide your staff with the confidence they need to work to the best of their ability.
• Providing the right support to people with Parkinson's and their carers will help to encourage trust and loyalty within with your employees, maintain a positive working environment for everyone involved in your business and improve your reputation as a good employer.

Find out more about how Parkinson's affects someone. 

An employee with Parkinson’s is very likely to meet the legal definition of being disabled under the Equality Act, or the Disability Discrimination Act in Northern Ireland.

This means that it is against the law for employers to discriminate against people with Parkinson’s in relation to their condition or its effects to be treated unfavourably at work as a result of their Parkinson’s or anything arising from it. It also means that employers are under a legal duty to make reasonable adjustments to support the employee in work.

Some people with Parkinson's may find it more difficult to carry out their work compared to employees without a disability. By law, an employer must help an employee with a condition like Parkinson's to overcome any problems they have with their work by making changes to working arrangements. These changes are called 'reasonable adjustments'.

What are reasonable adjustments?

Reasonable adjustments may include:

• making changes to the building the employee works in
• making changes to the employee’s job role
• changing or offering more flexibility with their working hours
• offering them training
• modifying equipment they use, such as computer adaptations, large button telephones or adjustable chairs.

This list doesn't cover everything, because what is reasonable and effective will be different for everyone and will depend on the circumstances. An employee might have their own suggestions on what might help them perform to the best of their ability.

If you and your employee are unsure about what adjustments they may find helpful you should arrange for them to have an assessment with an occupational health specialist. They can help a person with Parkinson's find out what the impact their work has on their health.

If you're a member of the Business Disability Forum, you can check their website or call their advice line for practical guidance on what to do, as well as information on what the law says.

Can an employee use reasonable adjustments as and when they need them?

Parkinson's is a fluctuating condition, meaning that people will find it easier to manage their symptoms on some days more than others. This is a fundamental part of life with Parkinson's.

Sometimes your employee may need to change the way they work. For example:

• temporarily working flexible hours on days when they are feeling less able to carry out their duties
• working from home from time to time
• using taxis instead of public transport to go to out-of-office meetings
• using teleconference or video calls rather than going to meetings in person
• temporarily changing duties to concentrate on things they find easier to do (for example, catching up on administrative tasks or desk-based work).

When you and your employee have agreed on some reasonable adjustments, it's a good idea to put them in writing. This is often referred to as a tailored adjustment agreement or workplace adjustment agreement.

The purpose of recording this agreement is to:

• make sure that you and your employee have an accurate record of what has been agreed
• give you both a chance to discuss the reasonable adjustments at any future meetings, such as your regular catch-ups or one to ones. (As an employer, it might be helpful to regularly review the adjustments with the employee to make sure they are still working and to agree and make any necessary changes)
• make it easier for your employee to continue the reasonable adjustments if they change jobs, move to a new location in the organisation or get a new manager

You can download a template agreement (also known as a 'reasonable adjustments disability passport) from the TUC website

Someone with Parkinson's can choose whether or not to tell their employer or manager they have the condition.

They might choose not to because:

• they don't feel comfortable telling other people about their condition
• they feel their symptoms won't affect their ability to do the job
• they feel that, at this time, having Parkinson's doesn’t make a difference to their working life.

Some people might be more open and feel they want to talk in detail about their condition. Or they may prefer to be less specific and just mention that they have a health condition and explain how their symptoms affect them.

The only exception is when the job requires the person to disclose any health conditions for health and safety reasons. For example, if someone was a scaffolder, they may need to disclose a health condition that affects their ability to climb scaffolding.

Data protection laws say that information about health is a special category of sensitive data, and may only be shared in specific limited circumstances. So it's important to remember that if an employee decides to tell you they have Parkinson's, you should not tell anyone else, including their fellow colleagues, unless you have the employee's consent, or where it is necessary to meet your legal obligations as an employer.

For example, you may need to tell the human resources department or other managers to meet legal obligations (including a duty to look after the employee's health and safety and to make reasonable adjustments under the Equality Act in England, Scotland and Wales or Disability Discrimination Act in Northern Ireland).

As an employer, you could consider running an education session, where an expert will come in and talk about a particular health issue to inform employees.

Does an employee have to tell other colleagues that they have Parkinson's?

This is up to your employee. They don’t have to tell other colleagues if they don’t want to. Your employee may want to take time to decide what they feel is best for them.

They may want to think about things like how their condition affects them in the workplace, how noticeable their symptoms are and what their relationship is like with the people they work with.

Taking time off for medical appointments or for treatments

An employee can ask to take time off work for regular medical appointments or treatment as part of their reasonable adjustment agreement. It might be helpful to talk to them about how much time they think they might need.

Taking sick leave

Time off sick is unplanned. If an employee with Parkinson's is taking time off sick, it doesn’t necessarily mean that their condition is getting worse. They may just need more support to manage their condition at work. This may be a good opportunity to agree on some reasonable adjustments to help them prevent taking time off sick. For example, working from home from time to time may help.

Returning to work

If a person's Parkinson's means they are more likely to need more time off sick than other people, this is a good opportunity to talk to your employee about any reasonable adjustments that may help them prevent taking time off sick.

If your employee is off sick for 4 weeks or more, or is off sick for shorter periods on a more frequent basis, you or their GP may refer them to an Occupational Health Adviser under the Government’s Fit for Work scheme. If this happens, you will receive a Return to Work Plan for them. You should go through this together to find adjustments you can make to help them return to work.

Access to Work grants

An Access to Work grant provides money for practical support for people with a long-term health condition like Parkinson's. Applications for Access to Work grants must be made by the person with Parkinson's.

Jobcentre Plus, or Jobs and Benefit Offices in Northern Ireland, administer the Access to Work programme. The scheme helps towards covering the costs of adjustments that would be unreasonable to expect an employer to make, because they are too expensive or impractical.  

Grants can provide funding for the following:

• A support worker if someone needs practical help either at work or getting to work, such as getting in and out of their car.
• Adaptations to a vehicle, or help towards taxi fares or other transport costs if a person cannot use public transport to get to work.
• Special equipment or alterations to existing equipment that is necessary because of Parkinson's, such as voice to text software or an adapted chair.
• Alterations to buildings, offices or a working environment, such as making doors easier to open.

To find out more visit www.gov.uk/access-to-work

Employees in Northern Ireland should contact an Employment Service Adviser in a local Jobs and Benefits office or JobCentre. You can find your nearest office by calling the freephone number 0800 353 530 or visiting nidirect.gov.uk.

Some people with Parkinson's may feel that with the right support they can continue working in their current role. Others may prefer to move to a new role more suited to their abilities. This could be within their current workplace or in a different organisation altogether.

Your employee may start thinking about giving up work completely before reaching state retirement age and earlier than they would have done had they not been diagnosed with Parkinson's. This might be because working with Parkinson's is becoming too difficult or they would prefer to concentrate on other aspects of their life. This is a very individual decision and is something your employee may wish to discuss with you.

If your employee is considering retiring, you should encourage them to talk to someone about the decision. This may be a family member, trusted friend or others who have gone through retirement. A counsellor can also help.

Ill-health retirement and Permanent Health Insurance (PHI) schemes

If someone’s health deteriorates and they want to retire early, their pension may be able to offer some financial support to help them cope. Whether or not this is possible depends on the terms of their pension scheme.

Because ill-health retirement is complicated, it's usually best for someone to talk to an independent financial adviser to make sure they are aware of all the options before they make a decision. There's more information on the Money Helper website.

If you employ or manage a staff member who cares for someone with Parkinson's, you will need to understand carers' rights.

Carers of someone with a long-term condition like Parkinson's are protected from being discriminated against or harassed at work.

This means that if an employee cares for someone with Parkinson's, they should not be treated less favourably than another employee who isn’t a carer.

Does an employee have to tell me they are a carer?

No. A carer does not have to tell their employer, but they may decide to do so at a later point. This may depend on whether you, as an employer, have a policy to support carers, or whether you'd be open to exploring ways to support them.

If you have an employee who is a carer, they are likely to need a range of support, which might include:

• special leave arrangements (paid or unpaid, which would be at your discretion as an employer), to cover any time they need to care for their loved one
• access to a telephone to check on the person they care for
• an employee assistance programme designed to deal with any personal or work-related problems that may affect employee’s abilities to do their jobs
• access to advice and information, perhaps on a staff website or carers' network

Can a carer ask for flexible working hours?

Employees who have at least 26 weeks' continuous employment may ask to work flexibly. So, even though an employee who is in a caring role doesn’t have the right to ask for reasonable adjustments, they have a statutory (legal) right to ask if they can work flexibly, for any reason. This could mean changing their hours or working from home.

As an employer, you must give serious consideration to the request. If you refuse, there must be good business reasons for doing so. To find out more about the statutory right to ask for flexible working, visit gov.uk/flexible-working.

When applying for flexible working, an employee can get support from a trade union, and also has the right to invite a colleague to accompany them to certain types of meetings.

While employees with less than 26 weeks’ service do not have a legal right to ask to work flexibly, supportive employers may be open to considering informal requests for flexible working, even from carers who do not have 26 weeks’ service.  

Can a carer get time off in an emergency?

The Employment Rights Act allows employees to take a 'reasonable' amount of time off work to deal with an emergency involving a dependant. A dependant can include a: 

• husband or wife
• partner
• child
• parent
• friend or family member who lives with the person but doesn't pay rent
• person who reasonably relies on someone to care for them, such as an elderly neighbour

It is at your discretion whether this time off is paid or unpaid. Your employee might need to take leave because of:

• the person they care for falling ill
• an emergency, such as a fall, that results in an ambulance visit
• unexpected problems with care arrangements
• the need to make longer-term arrangements for a dependant

Caring for someone with a long-term condition such as Parkinson's can be stressful. Some carers may decide to leave work to dedicate more time to their caring role, while others will stay in work, perhaps because they enjoy it or have certain financial responsibilities. 

If you have an employee who has Parkinson's or who cares for someone with the condition, you can direct them to our information on work and Parkinson's which provides further advice.