Employment and PD​

Table of Contents

Information for employers about Parkinson’s

This information is for anyone who employs, manages or is responsible for a member of staff who either has Parkinson’s or cares for someone with the condition.

Disclaimer

We’ve made every effort to make sure this information is correct at the time of publishing. But Early Onset Parkinson’s Disease (EOPD) cannot take responsibility for the accuracy, sufficiency or completeness of this information or any recommendation.

It does not constitute and is not intended to be a substitute for, legal advice.

  • 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.

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

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.

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

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

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

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

Name Web address

NameWeb address
Department of Social Protectionhttp://www.welfare.ie/en/Pages/home.aspx
Intreohttp://www.welfare.ie/en/Pages/Intreo_home.aspx
Department of Enterprise Trade and Employmenthttps://dbei.gov.ie/en/
Health and Safety Authorityhttps://www.hsa.ie/eng/
Equality Authorityhttps://www.ihrec.ie/
Revenue Commissionershttps://www.revenue.ie/en/Home.aspx
Irish Association of Supported Employmenthttp://www.iase.ie/
National Disability Authorityhttp://nda.ie/
Chartered Institute of Personnel and Developmenthttps://www.cipd.ie/
National Employment Rights Authorityhttps://employeradvice.ie
Citizens Informationhttps://www.citizensinformation.ie/en/
Enterprise Irelandhttps://enterprise-ireland.com/en/
Welfarehttp://www.welfare.ie/en/Pages/Workplace-Equipment-Adaptation-Grant.aspx
EOPD.iehttps://www.eopd.ie/

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.

Work and Parkinson’s

What we work at is often defines who we are and our position in society. If you have Parkinson’s, or you care for someone who does, you may have concerns about how this will affect your work. Whatever your circumstances, this information is to help you make informed decisions about your working life. It includes details about what your legal rights are in the workplace, how you can adapt the way you work and what your options are for the future.

DISCLAIMER

We’ve made every effort to make sure this information is correct at the time of publishing. But Early Onset Parkinson’s Disease (EOPD.ie) cannot take responsibility for the accuracy, sufficiency or completeness of this information or any recommendation.

It does not constitute and is not intended to be a substitute for, legal advice

Parkinson’s impacts almost every function and operation of your body and it should come as no surprise that it impacts your ability to work. Work is a major part of our lives to such an extent if you ask someone to describe themselves, they will often define themselves by the work they do. Work is not only a way of making a living, it can also be important for confidence, self-esteem, and personal satisfaction. Work can be fulfilling and give us a sense of purpose.is possible to continue working if your treatment is carefully managed and you have plenty of support. You may continue to work for many years, depending on the type of job you have and how your symptoms progress.

As your Parkinson’s progresses you will need to make changes to your home and working life. These changes could be something relatively simple like reducing your hours, or it might be something more significant like changing career or taking early retirement.

The most important thing is to stay as informed as you can about your rights in the workplace, and use all the support available to you.

How am I protected against discrimination in the workplace?

Having Parkinson’s means you are likely to meet the statutory (legal) definition of being disabled under the Employment Equality Acts, 1998-2015. This means that it is against the law for an employer to discriminate against you because of your Parkinson’s which is a disability.

Employers also have a duty to make changes to the way you work to help you continue doing your job i.e., reasonable accommodation.

Will I still be protected during periods when I’m feeling fine?

Yes. The law protects people who have fluctuating conditions like Parkinson’s, which are likely to change and develop over time. This means that you’re still protected even when your symptoms are not affecting your ability to carry out ‘normal’ day-to-day activities.

These activities may include:

  • walking
  • reading and writing
  • carrying or moving things
  • concentrating and learning
  • having a conversation or using the telephone

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 adjustments.

Reasonable accommodation/adjustment in workplace s may include:

  • making changes to the building you work in
  • making changes to your role
  • changing or offering more flexibility with your working hours
  • offering you training
  • modifying equipment, you 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. You may have your own suggestions on what might be helpful for you.

How do I ask for reasonable adjustments?

If you’re having problems doing your job or parts of your job, the thing to do is to talk to your line manager. If you need adjustments then you will need to tell them that you have a disability, but you don’t have to tell them you have Parkinson’s if you don’t want to.

Try to explain which part of your job is causing you a problem and what that problem is. For example, you may have difficulties traveling to work on public transport during rush hour because you can’t get a seat and find it hard to stand for long periods of time. Or you may have problems using a computer keyboard because of a tremor.

Don’t worry if you don’t have any suggestions for what reasonable adjustments may help you. Your manager can arrange for you to have an assessment with an occupational health specialist to find out what your problems are and to make suggestions for how to solve them.

What if my manager doesn’t know what to do, or does nothing?

If your manager doesn’t do anything to make the reasonable accommodation you need, you should contact the human resources department and explain your situation.

Take some time to think about what adjustments may help you, but remember that they have to be reasonable and something that your employer is able to do.

When considering whether it is reasonable to make a particular adjustment, your employer should take the following into account:

  •  Will the adjustment help you to do your job?
  • How practical is the adjustment? For example, is it possible for you to access a database from home, or is there anyone to cover for you if you start work later in the day?
  • What will the effect of the adjustment be? For example, what would the impact be in making changes to the building?
  • How much will the changes cost the business, financially or otherwise? The type and size of your employer will be taken into account – what is reasonable for a large employer may not be affordable for a small business.
  • Would the changes be disruptive to your employer’s business?
  • Is there any financial or other assistance available to help make reasonable adjustments? The Access to Work scheme may make a contribution to the cost of some adjustments. If your employer is a member of the Disability Federation of Ireland, ask your manager to look at the website or call the advice line for practical advice on what to do, as well as information on what the law says.

Can I use reasonable adjustments as and when I need them?

Because Parkinson’s is a fluctuating condition, you may find it easier to manage your symptoms on some days more than others. If you decide to tell your employer about your condition, it may help to make sure they understand that this is a big part of life with Parkinson’s.

Depending on what you do and what your needs are, it may be possible for you to temporarily change the way you work when you are struggling. For example, you could discuss the following with your employer:

    • Working from home from time to time.
    • Using taxis instead of public transport to take you to out-of-office meetings.
    • Using teleconference or video calls rather than going to meetings in person.
    • Temporarily changing your duties so that you concentrate on the things you can do (for example catching up on administrative tasks or desk-based work).
    • Temporarily doing flexible hours to help you work around the times of day when you’re feeling less able.

Because Parkinson’s is a fluctuating condition, you may find it easier to manage your symptoms on some days more than others. If you decide to tell your employer about your condition, it may help to make sure they understand that this is a big part of life with Parkinson’s.

Depending on what you do and what your needs are, it may be possible for you to temporarily change the way you work when you are struggling. For example, you could discuss the following with your employer:

  • Working from home from time to time.
  • Use taxis instead of public transport to take you to out-of-office meetings.
  • Using teleconference or video calls rather than going to meetings in person.
  • Temporarily changing your duties so that you concentrate on the things you can do (for example catching up on administrative tasks or desk-based work).
  • Temporarily doing flexible hours to help you work around the times of day when you’re feeling less able.

What is Workplace Adjustment Agreements?

When you and your manager have agreed on some reasonable adjustments in the workplace (which may also include working from home), 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 employer have an accurate record of what has been agreed
  • make it easier to continue your reasonable adjustments if you change jobs, move to a new location in the organisation or get a new manager
  • give you and your line manager a chance to discuss your reasonable adjustments at any future meetings, such as your regular catch-ups or one to ones. (You should regularly review your adjustments with your manager to make sure they are still working and to agree and make any necessary changes)
  • It may be worth considering having a friend or colleague attend the meetings as support, although this may be unnecessary depending on your relationship with your employer

When you and your manager have agreed on some reasonable adjustments in the workplace (may also include working from home) , 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 employer have an accurate record of what has been agreed
  • make it easier to continue your reasonable adjustments if you change jobs, move to a new location in the organisation or get a new manager
  • give you and your line manager a chance to discuss your reasonable adjustments at any future meetings, such as your regular catch-ups or one to ones. (You should regularly review your adjustments with your manager to make sure they are still working and to agree and make any necessary changes).
  • It may be worth considering having a friend or colleague attend the meetings as support, although this may be unnecessary depending on your relationship with your employer

It should come as no surprise that (discrimination legislation accepted) looking for employment with Parkinson’s will be more difficult than before you were diagnosed.

What type of work is best for me?

There are different options you can consider, including full-time and part-time work.

Before deciding what, you want to do, you may find it helpful to think about:

  • How your Parkinson’s symptoms affect you. Would doing simpler tasks be better? It might be possible for you to change roles or level of responsibility in your work
  • Travel and mobility. How easy is it for you to travel to and from work? Think about whether you need to travel to other locations or offices
  • How many hours you feel you’re able to work?
  • Your finances, including any pensions and savings you have. Knowing where you stand financially alongside what you think is best for your health will help you decide what type of work is best for you.

Self-employment

You may consider self-employment, which may give you some flexibility in terms of what you do and how.

There are certain things you need to think about if you are looking into self-employment. These include not necessarily having a regular income and having to arrange your own sick pay.

If you’re thinking of becoming self-employed but aren’t sure what you could do, you could consider something which uses your experience or skills, or something which you have previously done as a hobby.

You may want to set up a business as a trader, in a partnership, or as a company. How you register and run the business will depend on how you set it up. See self-employment setting_up_a_business_in_Ireland

Volunteering

Volunteering is a good alternative to paid work. Voluntary work can allow you to stay active, share your skills and meet new people, but have a lot more flexibility in terms of your working times. You could think about the things you enjoy doing or would be interested in trying.

Remember that you are allowed to do voluntary work while claiming some benefits. Sometimes the organisation you volunteer for will pay expenses, like travel fares. There are lots of volunteering opportunities available across Ireland. You can also volunteer with EOPD.ie. For more detail please email info@eopd.ie You can also find details of other volunteering organisations in the useful please see volunteer Ireland

If you’re looking for a job you may be wondering about whether you need to tell a possible employer about your condition.

In Ireland

It is against the law for a potential employer to ask you about your health or any disability before offering you a job, except in very limited circumstances.

You should only be asked questions about your health for certain purposes, such as in the examples below.

  • If a potential employer is trying to find out whether you need any changes or reasonable adjustments to be made to the recruitment process.
  • For monitoring purposes. Potential employers can ask you to complete a form giving your race, gender, sexuality, religion, age and if you have a disability. Filling in these forms is usually optional and they are processed separately from your application.
  • If a potential employer is trying to find out if you have a disability or health condition that would affect your ability to carry out an essential part of the job. For example, if you were applying for a job as a scaffolder your employer could reasonably ask you if you have any condition that would affect your ability to climb scaffolding and work at heights.
  • If they require an employee to have a particular disability or condition as part of the role they are recruiting for.

In particular, your potential employer should also consider what reasonable adjustments, if any, you may need. They should then make their selection decision following an assessment of how you would perform in the job if these reasonable adjustments were made.

Deciding whether to tell a potential employer about Parkinson’s

It’s up to you whether you tell a potential employer about your condition. Otherwise, the only time you would need to tell them is if:

  •  you think your Parkinson’s may cause a health and safety risk either to you or to someone else
  • you would need your employer to make changes to the way you work (reasonable adjustments)
  • you are requested to disclose in a pre-employment medical

You may decide that you don’t want to tell a potential employer that you have Parkinson’s. This may be because:

  • you don’t feel comfortable telling people about your condition
  • you believe your symptoms won’t affect your ability to do the job
  • you feel that, at this time, the fact that you have Parkinson’s doesn’t make a difference to your working life

On the other hand, you may decide you’d rather tell a potential employer about your condition. This may be because:

  • you prefer it when others know about your condition
  • your symptoms are quite noticeable and you want to explain these at your interview
  • you’d like to reassure your employer that you can do the job, perhaps with reasonable adjustments (if you think you need them)

Take some time to decide what you think is best for you. You could think about your symptoms, the type of job you are applying for, and your personal preferences. You may wish to discuss it with someone you trust or others with similar experiences

Positive discrimination is when one person is treated more favorably than another because of a ‘protected characteristic’. Protected characteristics are age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, sex or sexual orientation.

Generally, positive discrimination is unlawful – except in the case of disability. Both the Equality Act and the Disability Discrimination Act allow employers to actively seek people with a disability for a role and treat them more favorably than a non-disabled person in certain circumstances.

The most common form of positive discrimination is when a job advert says that the employer wants someone with a particular type of disability. This is usually because the role is working with people with that disability

and their personal experience is necessary. For example, the Royal National Institute for the Blind might want to employ someone who has a visual impairment for a specific role.

Should I tell my manager about my diagnosis?

This is up to you, but there are a few things to think about first.  

You don’t have to tell your manager or anyone else at work about your Parkinson’s unless:

  • it may cause a health and safety risk either to you or to someone else
  • you need to change the way you work because of your symptoms. In this case, you will need to ask your employer for a reasonable adjustment under the Equality Act and Disability Discrimination Act.
  • Although you won’t need to tell your employer what your condition is, they will need to know how your disability makes it difficult for you to do your job

If you do not tell your employer about your symptoms, they will not be under a duty to offer you reasonable accommodation/adjustments.

Unless you work in a small organisation without a human resources department, your manager doesn’t normally need to know that you have Parkinson’s specifically, if you do not feel comfortable telling them. You can just say that you have a health condition and you need to change the way you work (if this is the case).

Your manager or someone in the human resources department should arrange for you to have an appointment with an occupational health specialist or other medical adviser. Occupational health specialists can work with you to find out what the impact of your work is on your health, and make sure you are fit for the work you do. They will put a report together on how your condition affects your ability to do your job and what changes could be made to make sure you can keep working.

If you work for a large organisation, they may have their own occupational health specialists. Smaller businesses may send you to a GP. The occupational health specialist or GP will need to know your diagnosis and you should be asked to sign a consent form that lets them ask for reports from your own GP or specialist.

If you decide that you want to tell your manager about your condition you may find it helpful to give them some information about Parkinson’s. We have information for Information for employers about Parkinson’s that you may like to direct them to. 

Remember that if you tell your manager about your condition, they must not tell anyone else without your consent, except in very limited circumstances. For example, they may have to tell the human resources department or other managers to meet the terms of their legal obligations to you, such as their duty to look after your health and safety and to make reasonable adjustments under the Disability Discrimination Act.

If they do tell anyone else about your condition outside of these circumstances, they may be breaking the law. This is because the Data Protection Act says that information about health is sensitive, personal data, and may only be shared if you say so.

If you do let your manager or the human resources department know about your condition, you may find it helpful to ask for more information about their policies related to employees with a long-term condition.

Should I tell my colleagues about my condition?

It’s entirely up to you whether you tell your colleagues about your Parkinson’s. But the important thing to know is that you don’t have to tell your colleagues if you don’t want to.

You can take time to decide what you think is best for you in terms of what, if anything, you tell them. You may want to think about things like how your condition may affect you and your colleagues in the workplace, how noticeable your symptoms are and what your relationship is like with the people you work with. 

You may wish to discuss your decision with someone you trust outside of work, or speak to others, with similar experiences.

If I do want to tell my colleagues, what is the best way to do this?

If you do decide to tell your colleagues about your condition, you may like to spend some time thinking about what you want to tell them and how you want to do this. You may want to tell them about Parkinson’s in detail or you may prefer to be less specific and just let them know you have a health condition.

You may find it helpful to talk to your manager about how to tell your workmates. For example, you can tell them yourself or ask your manager to do it for you.

Some employers run education sessions, where an expert will come in and talk about a particular health issue to educate and inform employees. You could discuss running a session on Parkinson’s and decide whether or not you would want to take part in this.

EOPD.ie offers awareness sessions for workplaces who employ someone with the condition. The aim is to give staff a better understanding of Parkinson’s and the ways they can support colleagues (or customers) with the condition. Find out more information about awareness sessions please email info@eopd.ie

Access to Work grants

An Access to Work grant provides money for practical support to people with a disability, such as a long-term health condition.

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 actually download the forms and apply directly.

What can Access to Work provide funding for?

  • A support worker if you need practical help either at work or getting to work, such as getting in and out of your car
  • Adaptations to a vehicle, or help towards taxi fares or other transport costs if you cannot use public transport to get to work
  • Any 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.

How do I apply?

Applications for Access to Work grants must be made by the person with the disability.

If you’re in Ireland, you can find out more about Access to Work https://www.welfare.ie/en/Pages/EmployAbility-Service.aspx

Can I take time off for medical appointments or for treatments?      

Yes. You can ask to take time off work for your medical appointments or treatment as part of your reasonable adjustment agreement. Whether your employer agrees will depend upon whether the time off is reasonable in the circumstances.

Talk to your manager about how much time you think you need. If you know when your appointment is in advance, your employer should be able to allow you to take this time off.

What if I need to take sick leave?      

If you are not well enough to work you may need to take time off sick. You should follow your employer’s usual procedure for letting them know. This will include telling your employer immediately that you’re not able to work.

If you’re off sick for more than 7 days, you will need to arrange to get a doctor’s ‘fit note’ to give to your employer for statutory sick pay purposes. If you are off sick due to your Parkinson’s symptoms and haven’t told your employer about your condition yet, you may feel it’s best to do so before they get a fit note or letter from your doctor.

Am I entitled to any sick pay?

Each place of work will have a different policy on sick pay. But if you are sick for more than four days in a row (including non-working days) you may qualify for Statutory Sick Pay. This will be paid by your employer for up to 28 weeks.

You may qualify for more if your company has a sick pay scheme (or occupational scheme). Check your employment contract for details.

Your employer, as part of its Sick Pay Policy, will reserve the right to send you for an assessment with the company occupational doctor.

There may also be other benefits you can claim whether you qualify for Statutory Sick Pay or not, such as Housing Benefit.

Am I at risk of dismissal if I take long-term sick leave?

Being off work sick for more than four weeks may mean that you are considered to be long-term sick.

As a last resort, employers can dismiss you if you are long-term sick, but before they can do this they must:

  • consider if you can return to work with some changes (reasonable accommodation), such as working flexible hours or part-time, or doing different or less stressful work (with training if necessary).
  • ask you about when you could return to work and if your health will improve.
  • follow a fair procedure.
  • take independent occupational medical advice.

What if I think my employer is discriminating against me?

If you feel you are being treated unfairly in the workplace, the first thing to do is follow the company Grievance Procedure and talk to your immediate line manager. Ask for a meeting and talk to them about what has been happening. For example, you may feel you are being discriminated against because the reasonable adjustments you asked for haven’t been made, or you feel a colleague is treating you unfairly.

If your line manager is the problem, talk to their manager or the human resources manager. It’s best to start with an informal discussion. Your employer may simply not realise what difficulties you are having or be aware of what they should legally be doing. If you explain what you need, they may be willing to make the necessary changes.

If you are uncomfortable talking to your employer alone there are things you can do. If you are a member of a union, you can ask a trade union representative to go with you or, if not, you can ask if you can bring a colleague of your choice with you. You can also ask your employer to allow a family member or trusted friend to be there with you for moral support.

If, after the informal meeting, you are still unhappy, you should make a formal complaint or grievance. Your staff handbook should tell you the process for doing this, or you should ask for guidance from the human resources department on your employer’s policies.

You will also need to find out more about your legal rights. The Workplace Relations Commission or local Citizens Information Centre should be able to advise you.  

What if I believe I am being dismissed because of my condition?

If you are dismissed because of your disability or because your employer doesn’t want to make reasonable adjustments, you may be able to make a claim for unfair dismissal under the Employment Equality Acts 2008-2015 (disability discrimination) or under the Unfair Dismissal Acts 1977. Legal advice from an employment law expert should be sought on approach.

You must find out what rights you have to bring a claim and what you should do next as soon as possible because strict time limits apply to making claims to the employment tribunal.

If you have been given a warning about your performance or conduct at work, you may be at risk of dismissal and should seek advice immediately. This can be from your trade union if you are a member, your local Citizens Advice Centre.

When should I stop working?

You may start thinking about giving up work completely earlier than you would have done if you had not been diagnosed with Parkinson’s. This may be because working with Parkinson’s is becoming too difficult or you would prefer to concentrate on other aspects of your life.

If you’re thinking about retiring it may help to consider the following:

  • Don’t rush into a decision. If you’re finding it difficult to manage your symptoms, you may just need changes to your medication regime – and to take some time to adjust to this.
  • Think about how stopping work will affect you emotionally and practically.
  • Look carefully at your finances, including your pension, benefits and savings. Keep in mind that any benefits you get from work will end. It may be helpful to seek advice from an independent financial adviser.
  • Speak to your employer or trade union to make sure you’re leaving on the right terms, and at the best time. Some companies encourage their employees to attend training courses on preparing for retirement.

  • Consider the alternatives such as working part-time or volunteering.

  • Call Citizens Information helpline on (076)1074000 or welfare benefits service for further information.

    If you do decide to retire, it may take time to adjust to life without work. Talking to someone about the decision may help. This may be a family member, trusted friend, others who have gone through retirement, or a trained counsellor.

Can I ask for redeployment?

If your employer fails to provide reasonable accommodation s that would allow you to do your current job, your employers must look for suitable alternative jobs that you can be transferred to. This is known as redeployment. Remember that the job might be suitable if other reasonable accommodations are made, such as changing hours or location, or with the help of special equipment.

What are ill-health retirement and Permanent Health Insurance (PHI) schemes?

If your health deteriorates and you want to retire early, your pension may be able to offer you some financial support to help you cope. This is generally known as ill-health retirement.

Whether or not this is possible will depend on the terms of your pension scheme. If you retire early but are still medically fit for work, the amount you get may be lower.

Because ill-health retirement is complicated and dependent on your own circumstances, it’s usually best to talk to an independent financial adviser to make sure you are aware of all the options before making a decision.

There’s more information on ill-health retirement on the Pensions Advisory Service contact Pension Advice

You may be working as well as caring for someone with Parkinson’s. Paid work can provide financial independence and money to help with caring, as well as a break from caring, new social networks and friendships, better self-esteem, and a better pension. However, combining your responsibilities has its own challenges.

If you are in paid work and care for someone with the condition, you may find that, as time goes on, combining your responsibilities can be challenging. You may also need to make changes to maintain your own general health and wellbeing.

Are carers protected against discrimination in the workplace?

If you care for someone with a long-term condition like Parkinson’s you are protected from being discriminated against or victimised at work. This means that as a carer you should not be treated less favorably than another employee who isn’t a carer, and should still get the flexibility you are legally entitled to. Any offensive language about your association with a person with Parkinson’s should also not be tolerated.

Should I tell my employer that I’m a carer?

You do not have to tell your employer you are a carer. But it may help if you need to take time off to look after the person you care for.

You might make this decision depending on whether your employer has a policy to support carers, or whether they’d be open to exploring ways to support you. Find out what’s available before you approach your manager.

Possible support options include:

  • special leave arrangements to cover any time you need to care for your loved one (paid or unpaid which would be your employer’s discretion)
  • an employee assistance programme, if your workplace has one. This will be designed to deal with any personal or work-related problems you have that may affect your ability to do your job
  • access to advice, support, and information, perhaps on a staff website or carers’ network.

Should I tell my colleagues?

This is up to you, so take some time to consider what you think is best. Colleagues can be very supportive, and it may help to talk with someone you can trust at work. You may find that other colleagues are also carers. Together, you may be able to talk to your employer about ways you could be supported in juggling your job and caring.

Do I have the right to ask for flexible working hours?

You may have a statutory (legal) right to ask your employer if you can work flexibly. This may mean changing your hours or working from home. Your right to make this request will depend on how long you have been working at your company (the minimum for making a request is 26 weeks). Your employer must give serious consideration to your request but they can refuse if there are good business reasons for doing so.

Remember that there is nothing stopping you from talking to your employer informally. This may also be appropriate if you need a temporary change to your role.

Where can I get support?

If you are a member of a trade union, ask them for help. A local, or regional, union representative may be able to negotiate with your employer on your behalf and attend meetings with you.

If you are not in a union, you have the right to invite a colleague to attend certain types of meeting with you.

Can I get time off in an emergency?

Force Majeure Leave was introduced in the Parental Leave Act 1998 to cater for unplanned and unforeseen urgent family reasons where an employee must take time off at little notice. This entitlement is limited to circumstances where, due to injury or illness to certain family members, the immediate presence of the employee is indispensable.

Scope:

Subject to the above circumstances eligibility applies where an employee’s presence is related to one of the following categories:

  • the child or adoptive child of the employee.
  • the spouse of the employee, or a person with whom the employee is living as husband or wife.
  • a person to whom the employee is in loco parentis
  • a brother or sister of the employee.
  • a parent or grandparent of the employee.
  • persons in a relationship of domestic dependency, including same-sex partners.

Entitlement

Entitlement is limited to 3 paid days in any 12 consecutive months or 5 paid days in any 36 consecutive months. Absence for part of a day is counted as one day of force majeure leave husband or wife.

Should I stop doing paid work?

If you decide you have to leave work, think about other options which may be available to you other than resigning, such as:

  • a career break
  • voluntary redundancy
  • retirement

Employers are keen to keep skilled, experienced, and committed staff, so they may be open to changing your role to fit around your caring duties. You may consider:

  • part-time working or job sharing
  • working from home
  • paid or unpaid leave that allows you to think about long-term options

What about my finances?

If you are thinking of leaving work to spend more time caring for a loved one, you may be concerned about your finances. But there are things you can do to ease any worries, such as making sure you are claiming all the benefits you are entitled to.

Useful contacts and reference points

Name Web address

NameWeb address
Department of Social Protectionhttp://www.welfare.ie/en/Pages/home.aspx
Intreohttp://www.welfare.ie/en/Pages/Intreo_home.aspx
Department of Enterprise Trade and Employmenthttps://dbei.gov.ie/en/
Health and Safety Authorityhttps://www.hsa.ie/eng/
Equality Authorityhttps://www.ihrec.ie/
Revenue Commissionershttps://www.revenue.ie/en/Home.aspx
Irish Association of Supported Employmenthttp://www.iase.ie/
National Disability Authorityhttp://nda.ie/
Chartered Institute of Personnel and Developmenthttps://www.cipd.ie/
National Employment Rights Authorityhttps://employeradvice.ie
Citizens Informationhttps://www.citizensinformation.ie/en/
Enterprise Irelandhttps://enterprise-ireland.com/en/
Welfarehttp://www.welfare.ie/en/Pages/Workplace-Equipment-Adaptation-Grant.aspx
EOPD.iehttps://www.eopd.ie/
Workplace Relations Commissionhttps://www. Workplacerelations.ie

 

Keeping A Diary

It is recommended that you keep a personal diary of your interaction with your employer and others,  The record should be kept on your personal computer or own notebook which should be kept secure. (If recording on your company computer transfer the information to your own equipment by email or drive, frequently|)

Information recorded should include notes of meetings, with the date and written up  the day of the meeting

Any discussions you have with your line manager directly related to Parkinson’s, recorded on the day of the event and dated

Any absences due to Parkinson’s

Perceived harassment or discrimination

The notes should record facts separately from opinion thus a comment about you being too slow for the job, should record the statement, who made it and date /time.  How it made you feel or your perceived reaction of fellow employees should be recorded in a separate paragraph.

 

Plan

Income Protection Insurance

You should enquire whether your employer has income protection insurance or not.

Newly Diagnosed with Parkinson’s

About Parkinson’s

Management of PD

Complimentary Therapies

Support Centre Contact List

Volunteer Groups