PKD and Employment
Polycystic kidney disease (PKD) may affect your working life. For example, you might need to have time off or alter your work pattern. Adapting to this and having discussions with your employer can be stressful.
This leaflet – written by a PKD patient – aims to give you some starting points on where you stand with equality laws and how you might approach issues with your employer. Please also seek personalised advice from specialist organisations such as Citizen’s Advice and the Equality Advisory & Support Service (contact details below).
Is PKD affecting your day-to-day work life?
How is your right to work protected?
Working with your employer to enable you to do your job
PKD and sick leave
When are employers within their rights to dismiss an employee?
What about finding a new job?
What to do if you think you’re being unfairly treated
Coronavirus and persons who are extremely vulnerable
More information from others
If PKD is impacting on 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. For example, 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. The people it covers include 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. Unfortunately, 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:
Explain your health condition
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.
Get medical reports
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 on (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.
Ask for reasonable adjustments to be made
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 a 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. However, their circumstances determine what is ‘reasonable’.
Be honest with your employer and tell them what would help you.
If your employer doesn’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.
Be open to coming to a reasonable agreement with your employer
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.
Example discussion regarding a reasonable adjustment to hours
Patricia works as a sales manager. She asks to reduce her hours to 4 days per week, due to fatigue. Her employer feels this is not possible as they need someone 5 days a week, and it would be very difficult to recruit someone to work the remaining 1 day a week.
Patricia and her employer have a discussion and come up with two possible solutions:
- A more junior staff member who is ready to progress could be offered the opportunity to expand their role and hours.
- Patricia could change her working pattern, for example working 3 full days and 2 half days or work consider reducing her hours down further and job share with another person.
Her employer agrees to look at the feasibility of option 1 as the priority.
Know your rights
The Equality Act 2010 and other employment law can be difficult to understand. If you’re unsure of your rights regarding reasonable adjustments, you could ask the Citizens Advice Bureau to explain your rights to you. Alternatively you could 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 symptoms. If you have more days of PKD-related absence than your company’s absence policy allows, you may be invited to a meeting to discuss this. Your employer 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 on your reasons for absence and their absence and sickness policy.
To help you prepare for 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?
- Keep a note of how many days you have had off for PKD and for unrelated reasons.
If your absence related to PKD is being counted as sick leave, ask why. Bear in mind that absences not related to PKD (e.g. due to a head cold) will 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. Alternatively, contact ACAS who can advise you along the way.
It’s illegal for companies to discriminate or mistreat an employee who is protected by the Equality Act. However, there may come a point when your employer takes the view that you’re not able to perform your duties anymore and they have made reasonable adjustments to remove any disadvantages. They could take steps to dismiss you on capability grounds due to ill health.
Your employer must demonstrate that your dismissal is fair. For example, if you’re not meeting the requirements of your job due to disability, 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’re 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 enquiries 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 (for example, 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, check your employer’s grievance procedure. This 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 but the employment tribunal has discretion to allow claims outside the 3 month timeframe if there are good reasons why you were unable to submit it within 3 months. Before submitting a claim you need to engage with ACAS and you will be offered ‘early conciliation’, this is a service offered to try and resolve a dispute before proceedings are issued at the employment tribunal. If it is not possible to resolve the dispute during early conciliation then you can proceed to bring a claim in the employment tribunal.
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 coronavirus (COVID-19) pandemic has been a particularly challenging time for those with underlying health conditions. It can be helpful to know where you stand in relation to your employment rights. During the peak of the pandemic, you will have been advised to “shield” if you fall in the extremely vulnerable group. Persons shielding stayed at home and took extra measures to reduce the chance of catching the virus (see gov.uk for more information).
The shielding programme in England was put on hold on 1 August 2020. If your area of England is in local lockdown, you might be advised to shield – see guidance for lockdown areas at gov.uk. Although not officially ‘shielding’, some persons may still be advised to stay at home by their doctor. Shielding rules may differ for Scotland, Northern Ireland and Wales.
What should employers do while you’re shielding?
If you’re in the extremely vulnerable category, speak to your employer as soon as possible to inform them. Your employer must do everything they can to support you if you’re advised to shield. You may be able to carry out your work from home while you’re shielding, which your employer should support. Or there might be other suitable tasks they can give you do to from home. If your employer does not agree to you working from home, or if your role does not allow it, your employer should look to the Furlough Scheme for Shielded Employees. Under the Furlough Scheme, you’ll not be required to work for a temporary period but will be paid a percentage of your pay.
What should employers do when shielding ends?
Extremely vulnerable persons can go to work as long as the workplace is ‘covid secure’ but should work from home whenever possible. Your employer is required to have safe procedures in place for shielding employees returning to work. If you feel that your workplace is not safe or if you have concerns about returning to work, speak to your employer. If they do not take your concerns seriously, ask for a risk assessment to be carried out. ACAS can provide you with support if you feel unsafe at work.
Due to the pandemic, some organisations are facing financial difficulties and will need to make redundancies. If you’ve been required to shield (or have been furloughed due to being in the shielding category) this should not be used as part of the selection criteria for redundancy. You should not be selected for redundancy on the basis that you are unable to come into the workplace or because you are deemed to be “out the loop” as you have been furloughed.
Your shielding has been a result of your health condition. Equality legislation makes it unlawful for a disability to be taken into consideration when being selected for redundancy. If you’ve been advised that you’re facing redundancy, ask your employer if you can see the selection criteria they have used and the scoring system (if applicable). If you feel you’re being treated unfairly, seek further advice from your union or ACAS.
- 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.
- NHS Choices (www.nhs.uk) has information on your rights regarding your employer requesting access to your medical records.
Published by the PKD Charity
The PKD Charity is a registered charity in England and Wales (1160970) and Scotland (SC047730).
A company limited by guarantee. Registered company in England and Wales (9486245)
Information Product Ref No ADPKD.PAE.11.2020V2.0
© PKD Charity 2020
First published October 2020
Due to be medically reviewed October 2023
Authors and contributors
Written by Fiona Davies and edited by Hannah Bridges, PhD, Independent Medical Writer.
With thanks to all those affected by ADPKD who contributed to this publication.
PKD Charity Helpline: The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.
Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.
This information has been produced under the terms of The Information Standard.
Read the complete version (PDF) of this article with the scientific references used to produce and review the information.