Key facts about Parkinson’s that every employer should know

• 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.

How can I support an employee with Parkinson’s?

Reasonable adjustments

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 by making changes to working arrangements. These changes are called ‘reasonable accommodation.

What are reasonable adjustments?

Reasonable accommodation 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 accommodation/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 Disability Federation of Ireland, 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)

Workplace accommodation/adjustment agreements

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 catchups or one to ones. (As an employer, it might be helpful to regularly review the adjustments 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

Does an employee have to tell me they have Parkinson’s?

Someone with Parkinson’s can choose whether 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, currently, 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.

The Data Protection Act says that information about health is sensitive, personal data, and may only be shared if the person agrees to this. 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 and family, unless you have the employee’s consent.

You may need to tell other people, but only in limited circumstances and mindful of GDPR requirements. 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 Employment Equality Acts, 1998-2015). For more details, please see citizensinformationnin_work/equality_in_the_workplace

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. EOPD.ie offers awareness sessions that will give your staff a better understanding of Parkinson’s and the ways they can support colleagues (or customers) with the condition.

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.

Can I send employee to company occupational doctor?

This provision may be included in employees’ contract of employment. This process will require the employee’s GP / Consultants to share information with company doctor so that an accurate medical assessment can be undertaken of the role the employee performs. This process will facilitate and support proactive engagement on accommodating the employee to perform their role as long as possible.

What about when a person with Parkinson’s needs to take time off work?

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.

Checklist for people with disabilities and long-term illness https://www.citizensinformation.ie/en/reference/checklists/checklist_disability.html

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, you or their GP may refer them to an Occupational Health Adviser or company doctor 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

The Access to Work grant is called the Workplace Adaptation Grant in Ireland and EmployAbility do not administer it but we can support companies in applying. http://www.welfare.ie/en/Pages/Workplace-Equipment-Adaptation-Grant.aspx companies/individuals could download the forms and apply directly

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 it 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 http://www.welfare.ie/en/Pages/a-retired-or-an-older-person.aspx

What about when a person with Parkinson’s needs to take time off work?

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.

Checklist for people with disabilities and long-term illness https://www.citizensinformation.ie/en/reference/checklists/checklist_disability.html

Ending work

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 Pension Advice

Invalidity Pension https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/invalidity_pension.html

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.

Checklist for people with disabilities and long-term illness

https://www.citizensinformation.ie/en/reference/checklists/checklist_disability.html

Useful contacts and reference points

Useful contacts and reference points

Name Web address

Some Practical Advice about Meetings

• There are generally on and off periods during the day, scheduling meetings during ‘on’ periods will be more productive.
• As the illness progresses handwriting may be impacted, use of a laptop or other electronic aids may be of assistance. For long complex meetings assigning a note-taker at the start of meetings may be considered.
• As the illness progresses the employee may benefit from breaks in long meetings, indeed all employed may benefit from a 60-second break.