Work and Parkinson's

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 adjustments 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
• providing or 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 first thing to do is to talk to your 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 travelling 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 adjustments you need, you should contact the human resources department and explain your situation.

You can also contact the Access to Work scheme and apply for a grant. (See 'Working with Parkinson's' section).

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 Business Disability Forum, 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. 

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.

What are workplace adjustment agreements?

When you and your manager 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 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)

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 the government's guidance on setting up a business for more information.

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's lots of volunteering opportunities available across the UK. You can also volunteer for Parkinson's UK. You can also find details of other volunteering organisations in the useful contacts section.

Do I have to tell potential employers that I have Parkinson's?

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

In Great Britain

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 stating 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 Northern Ireland

Employers are still allowed to ask questions about health and disability before making a job offer when they have a good reason for doing so. For example, when a job involves working at heights. If they ask you to complete a pre-employment health questionnaire, you should answer the questions on the form honestly.

However, the Equality Commission for Northern Ireland says that an employer should only consider a response to a health questionnaire as one of a number of factors to consider before reaching their final decision about who to hire. The same applies to the results of a medical examination or the opinion of a medical adviser.

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.

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

In Great Britain

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 stating 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 Northern Ireland

Employers are still allowed to ask questions about health and disability before making a job offer when they have a good reason for doing so. For example, when a job involves working at heights. If they ask you to complete a pre-employment health questionnaire, you should answer the questions on the form honestly.

However, the Equality Commission for Northern Ireland says that an employer should only consider a response to a health questionnaire as one of a number of factors to consider before reaching their final decision about who to hire. The same applies to the results of a medical examination or the opinion of a medical adviser.

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.

Generally speaking, 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 live in Northern and your employer asks you to complete a pre-employment health questionnaire

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
• your symptoms are largely unnoticeable but you’re concerned that your employer might misinterpret them. For example, if your symptoms cause you to struggle with the role or any part of it, they may be mistaken for a problem with your general performance or ability to do the work.
• 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.

Positive discrimination is when one person is treated more favourably 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 favourably 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, a charity working with visually impaired people might want to employ someone who has a visual impairment for a specific role.

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 or Disability Discrimination Act in Northern Ireland. 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 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 specific 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 you work with. This includes their duty to look after your health and safety and to make reasonable adjustments under the Equality Act or 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 data protection laws say that information about health is a special category of personal data, and may only be shared if you say so, or in these limited circumstances.

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.

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

Jobcentre Plus, or Jobs and Benefit Offices in Northern Ireland, administer the Access to Work programme. It is there to provide help towards covering the costs of adjustments which would be unreasonable to expect an employer to make, because they are too expensive or impractical. Your employer still has a duty to make reasonable adjustments under the Equality Act and the Disability Discrimination Act.

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 England, Scotland or Wales, you can find out more about Access to Work on the government's website. 

If you're in Northern Ireland, you should contact an Employment Service Adviser in your local Jobs and Benefits office or JobCentre. You can find out where this is by calling the freephone number 0800 353 530. You can also visit the Northern Ireland Direct website to find out more about Access to Work grants.

What if I think my employer is discriminating against me?

If you feel you're being treated unfairly in the workplace, the first thing to do is talk to your 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. Your trade union, the Equality Advisory and Support Service (EASS) the Advisory, Conciliation Arbitration Service (ACAS), Citizens Advice or the Equality Commission for Northern Ireland 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 disability discrimination or unfair dismissal.

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 or Law Centre, or from the Disability Law Service.

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 (paid or unpaid, which would be at your employer’s discretion).

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.

There may also be other benefits you can claim whether you qualify for Statutory Sick Pay or not, such as Housing Benefit. To find out more, call our confidential helpline on 0808 800 0303 and speak to our benefits and employment adviser.

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

Being off work sick for more than 4 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, 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 medical advice

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 our helpline on 0808 800 0303 or speak to your local Citizens Advice 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 there are no reasonable adjustments that would mean you could 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 adjustments are made, such as changing hours or location, or with the help of special equipment.

If you can’t do your job, and there’s no other suitable job in the organisation you can do, even with reasonable adjustments, your employer can end your contract. This may be a fair dismissal and as you are not redundant you will not be entitled to a redundancy payment. This is because your job still needs to be done and your employer will have to find someone else to do your role

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 MoneyHelper website.

• Access to Work (For England, Scotland and Wales)
• Advisory, Conciliation and Arbitration Service (ACAS)

This organisation provides impartial advice for both employers and employees who are involved in an employment dispute or are seeking information on employment rights and rules.

• Citizens Advice England
• Citizens Advice Wales
• Citizens Advice Northern Ireland
• Citizens Advice Scotland
• Disability Law Service

This organisation provides specialist legal advice for disabled people and their families and carers.

• Disability Action (Northern Ireland)

This organisation has a number of programmes that help people with disabilities find employment and support them in their place of work.

• Do-it

This is an online database where you can search volunteering opportunities in your area.

• Equality Advisory Support Service (EASS)

The EASS helpline can provide information, advice and support on discrimination and human rights issues to people in England, Scotland and Wales. This includes advice on the Equality Act and how it applies to you, what options you have in regards to resolving any issues at work and assisting you in finding local sources of support. The EASS does not provide legal advice.

• The Equality and Human Rights Commission
• Equality Commission for Northern Ireland
• Information and guidance on the Equality Act

The Government Equalities Office has information and guidance on the Equality Act 2010 on its website. 

• Information and guidance on the Disability Discrimination Act 1995 in Northern Ireland
   
• Law Centres

Law Centres are not-for-profit legal practices providing free legal advice and representation to disadvantaged people.

To find your nearest Law Centre visit the Law Centres website. 

• MoneyHelper

A government-backed service offering free information and advice on pensions and money-related matters, including benefits and financial support for carers and those with a disability.

• Volunteering Matters

This organisation helps people of all ages work with their local communities, and lists local volunteering opportunities.  

For carers

• Employers for Carers

Employers for Carers is a website set up by employers for employers, which provides practical advice on supporting carers within their workforce.

• Carers UK Adviceline

Provides advice and information on carers' employment rights.