If PKD is affecting your day-to-day life, you might be classed as having a disability. As PKD is a progressive illness, it might affect you more, or in different ways, as you get older. You may need to take planned time off work for medical appointments and clinical procedures as well as unplanned leave due to your illness.

Examples of disability caused by PKD are:

• Your reduced kidney function is causing extreme tiredness, which affects your normal daily activities, e.g. you’re unable to concentrate in long meetings, you need important things written in email, and you can no longer work full time.
• Your PKD is causing anxiety, which is affecting your normal daily activities. You need more time to respond to questions or solve problems, and struggle to think clearly under pressure.
• Your enlarged kidneys are causing you pain, meaning you can no longer carry out manual tasks, or sit in one position for any length of time.
• You have restless legs, so are unable to sit for long periods of time.
• Your medication means you need to visit the toilet frequently.

The Equality Act 2010 is legislation that protects people from discrimination, harassment and victimisation in the UK, including those with a disability due to long-term illnesses such as PKD.

The definition of disability in the act is: “a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities”. ‘Substantial’ is explained as being more than minor or trivial, and ‘long-term’ means 12 or more months.

Under the Equality Act 2010, employers must make ‘reasonable adjustments’ to support people to manage their illness at work. Examples of reasonable adjustments are altering your working environment or letting you come back to work gradually. We give more examples later.

Many employers are aware of their obligations under the Equality Act and nurture a caring and supportive environment. Others might be less aware or might sometimes fail to support their employees as needed. If you feel that your employer is failing to understand or meet your needs, here are some points to help:

Your employer cannot support you and consider reasonable adjustments if they don’t understand how PKD affects you. Help them understand. For example, if you have a ‘return to work’ meeting following a PKD-related absence, mention that you have PKD and explain what it is.

Are you happy for them to request a report from your GP about your condition and symptoms? Would you attend an Occupational Health Assessment? If so, let your employer know.

Alternatively, ask your manager for a meeting to discuss your health; explain how PKD affects you at the meeting.

Medical reports from your GP or Occupational Health can help you to demonstrate how PKD is affecting your daily work life. These reports should give details about your condition and how it’s impacting (or could impact on) your work.

In these reports, your doctor or Occupational Health can suggest reasonable adjustments that could be considered to support you. They’ll also confirm that you’re covered by the Equality Act 2010. You have the right to see these reports before they are passed to your employer.

When your employer gets the report, it’s good practice for them to arrange a meeting with you to discuss the content. If they don’t, request a meeting.

Once your employer is aware of your disability, they must consider what reasonable adjustments they can make to avoid you being at a disadvantage when doing your job. What’s considered ‘reasonable’ will partly depend on your role and the size of organisation for which you work. For example, a large corporation may be able to offer you an alternative role with better-suited duties, but a small charity might not have the flexibility to do this.

Examples of reasonable adjustments an employer might make for a person with PKD-related disability are:

• allowing you to reduce your hours, becoming part-time
• altering your working patterns to allow you to avoid rush-hour traffic and therefore have a shorter and more bearable commute
• allowing you to work evenings on days when you have dialysis sessions
• adjusting your duties to remove heavy lifting or bending
• providing a different chair to make sitting more comfortable
• allowing home working when you’re experiencing pain
• organising access to a private room for you to perform peritoneal dialysis exchanges

Please keep in mind that your employer is legally obliged to consider reasonable adjustments, but their circumstances determine what is ‘reasonable’.

Be honest with your employer and tell them what would help you.

If your employer has limited knowledge of their obligations and they don’t start a discussion around reasonable adjustments, it would be a good idea to submit something in writing. Outline what was in your medical report and what reasonable adjustments you would like to be formally considered. This will hopefully encourage them to act.

Your initial suggestion to your employer for a reasonable adjustment might be one they feel they can’t meet. If this happens, be open to having discussions to identify alternative arrangements that might work for you both.

The Equality Act 2010 and other employment law can be difficult to get your head around. If you’re unsure of your rights regarding reasonable adjustments, you could ask the Citizen’s Advice Bureau to explain your rights to you, or ask the Advisory, Conciliation and Arbitration Service (ACAS) to help you and your employer reach an agreement. The contact details of both organisations are provided later.

Unfortunately, as your PKD progresses there may be times when you’re on sick leave due to the complications of your illness. If you have more PKD-related absence than your company’s absence policy allows, you may be invited to a meeting to discuss this. They could give you a warning regarding your absence.

Please don’t panic if you’re called to your first meeting regarding sickness. It may be that your employer wants to use this meeting to document your condition and discuss reasonable adjustments.

The action that your employer may take regarding absence will depend, in part, on the reasons for your absence and their absence and sickness policy.

To help you prepare for any meetings and explain your absence:

• Make sure that any absence related to PKD is reflected in your self-certificate/medical certificate.
• Check your company’s sickness policy. Does sickness related to disability count in terms of the sickness procedure?
• Be aware how many days you have had off for reasons other than your PKD.

If your absence related to PKD is being counted as sick leave, question this. Bear in mind that absences not related to PKD (e.g. due to a head cold) will still be counted in any absence management scheme.

If your employer issues a warning to you for PKD-related absence, it’s a good idea to seek union support if you’re a member, or contact ACAS who can advise you along the way.

It’s illegal for companies to discriminate or mistreat an employee who is covered by the Equality Act. However, there may come a point when your employer takes the view that you’re not fulfilling your contract of employment. They could take steps to dismiss you on grounds of, for example, needing to run a profitable business, business efficacy and reducing costs, or for health and safety reasons. This could happen, for example, if you have ongoing long-term illness or require further adjustments that they cannot make.

Your employer should demonstrate that your dismissal is fair. So, in the case of you not meeting the requirements of your job due to your disability, for example, they could:

• document the reasonable adjustments they have already made
• explain why they can’t make further adjustments
• show that the reasonable adjustments made so far aren’t resulting in you being able to meet the requirements of your job, which is affecting business profitability
• explain why it’s not possible to find you an alternative suitable position in the organisation

If you’re invited to a disciplinary hearing, you are entitled to take someone with you if you would like (a colleague or a trade union rep).

This is a complex area of law. If you find yourself in this situation, please seek suitable advice, for example, from your union or ACAS.

If you’re seeking a new job, your potential future employer can only make limited enquires about disability. This is to protect disabled people from being unfairly disadvantaged during the selection process.

Recruiters can ask:

• whether you have a disability that would affect your ability to do an assessment test that is part of the selection process (e.g. a test at a computer) and what reasonable adjustments they can make to help
• whether you can carry out job functions that are core parts of the job
• whether your health meets standards needed for safety reasons

They might also ask about disability to monitor the diversity of their job applicants.

Other than these specific situations, recruiters cannot usually ask questions about your health before offering you a job.

If you feel that you’re being unfairly treated by your employer due to your PKD, refer to your employer’s grievance procedure. It should give guidance on how to raise your concerns. If your employer doesn’t have a grievance procedure, put your concerns in a letter. State that you wish to raise a grievance and outline the reasons why. Your employer should arrange a meeting with you to discuss your concerns in more detail.

If you think you have been unfairly treated by a recruiting employer or your current employer, you can also lodge your claim with the Employment Tribunal. You should usually do this within 3 months of the discrimination taking place.

The Tribunal will hear evidence from you and your employer. To find out more about lodging a claim, see the Gov.uk website.

Again, please seek suitable advice, for example, from your union or ACAS. They can guide you on taking the right steps.

• The Equality Advisory & Support Service (EASS; www.equalityadvisoryservice.com) has a helpline (0808 800 0082) that advises and assists individuals on issues relating to equality and human rights across England, Scotland and Wales. They also have online information on disability rights.
• The Advisory, Conciliation and Arbitration Service (ACAS; www.acas.org.uk) has a helpline (0300 123 1100) and advice for employees and employers, including on disability.
• Gov.uk (www.gov.uk) has information on the Equality Act 2010, reasonable adjustments, and starting an employment tribunal.
• Citizens Advice (www.citizensadvice.org.uk) also has useful information, including on discrimination at work and disciplinary meetings.