Employment rights for parents of a child with leukaemia

There are over 1,600 children diagnosed with cancer in the UK each year – approximately a third are diagnosed with leukaemia. A leukaemia diagnosis has a huge impact on you, your child and the rest of your family - what follows is usually a very emotional and distressing time and lives are often turned upside down.

Understandably, whilst your child is receiving treatment (and for some time afterwards), you will want to be with them every step of the way – often this means that you will have to take an extended period of time away from work. You may think you must work, as not doing so will cause you financial difficulties. However, this does not mean you have to carry on as normal. It is important that you know what your rights are when discussing with your employer about taking time away from work. We discuss your options below.

What are my options?

Flexible Working

There are laws that protect the rights of people at work who are caring for their child who is ill. The Work and Families Act 2006, the Employment Rights Act 1996 and the Employment Rights (Northern Ireland) Order 1996 give carers who are employed the right to ask for “flexible working”. This could include changing the number of hours you work, introducing flexible starting and finishing times, job sharing or working from home.

Anyone who has been employed for 26 weeks or more has a right to ask for “flexible working”, if they haven’t made another request for it in the last 12 months. Although you have the right to ask, your employer can refuse your request if they have a good reason to do so and can demonstrate this reason. Example reasons include being unable to recruit additional staff in your absence or demonstrating that your request would affect the performance of the organisation. They should give you a response either way within 3 months.

If your employer refuses your request for flexible working you may be able to appeal the decision. If you feel that your employer did not handle your request in a “reasonable manner”or that their decision was based on incorrect information, you may also be able to make a complaint to the employment tribunal. This would need to be done within three months of the employer’s initial decision.

Unpaid Leave

Compassionate leave

Your employer may allow you ‘compassionate leave’. This is leave you can take to deal with a distressing situation such as illness or bereavement. Compassionate leave can be paid or unpaid but is designed for short term and emergency situations. Therefore, if your child will be ill for some time, you should let them know as soon as possible and arrange a more long-term solution. Check your contract or employee handbook to see if this is something your employer offers and how long for.

Time off for dependants

Employers do not have to offer compassionate leave, although most do and leave the situation it applies to open to interpretation. The law also protects an employee’s right to take unpaid time off to look after their child if they are ill or there is an emergency. In England, Scotland and Wales, the Employment Rights Act 1996, as amended by the Employment Relations Act 1999, means as a parent you’re allowed a reasonable amount of time off to look after your child in an emergency, such as after a leukaemia diagnosis.

There is no limit to the amount of time you can take off but your employer may require you to use some of your annual leave or unpaid parental leave if you want to take an extended amount of time off. Check your contract or employment handbook to see if the amount of time you can have off as an emergency is defined there. If it is not, you may want to give an approximate time frame and offer to keep your employer updated at a certain time in the future to avoid unwanted phone calls or pressure to return to work.

Parental leave

As a parent you are entitled to eighteen weeks parental leave from work up until your child turns 18 (i.e. one extra week of leave for every year). In any one year, a parent can take four weeks of the 18 provided as unpaid parental leave (unless the employer agrees to more); this is per parent and per child, so both parents can have time off. Parental leave must be taken as whole weeks rather than individual days. This may be particularly useful to enable you to be with your child throughout their stay as an inpatient in hospital.

You have to have worked for the organisation for more than a year to be entitled to parental leave. It is also worth letting your employer know about your situation as soon as you can so that they are able to plan for your absence.

Long term caring responsibilities

If your child will need support long term or more support than a child of the same age who doesn’t have leukaemia, you may want to look at being a carer. There are benefits and other forms of support available to those that care for others; for example, you can get carers allowance if your child requires 35 hours or more of care a week and receives disability living allowance (DLA). You can continue to work and receive support for being a carer too. It may be a good idea to find out more about your employer’s policy for supporting carers before you tell them about your situation. You could go over your contract or read your employee handbook, then talk to your line manager or human resources department about what you are entitled to and what other support your employer can provide. Some employer’s offer time off specifically for carers or you could consider a career break.

For more information on becoming a carer, please see the Carers Rightstoolkit.

Caring and Discrimination in the Work Place

In the UK, parents of children with cancer are protected from direct discrimination and harassment at work by the Equality Act (2010) in England, Scotland and Wales, and the Disability Discrimination Act in Northern Ireland. This means that if you are treated differently than another employee because you have had time off to look after your child, you are protected by this legislation. For example, it would be unlawful if you were refused a promotion because you had had time off with your child when they were ill. If you feel that you are being treated unfairly at work because you have had time off to care for your child and you feel you are unable to resolve the issue informally, you could consider putting in a “formal grievance”.This isa more formal way of resolving your issue. Your employer should have a grievance policy, usually found in your contract or company handbook, that should be followed. Please see our Cancer and Discriminationtoolkit for more information on how to address discrimination in any settings.


Where to find out more?

A good place to start is www.gov.uk – which is the best place to find government services and information online.

This information was correct as of October 2018 when it was first published. If you need any further support with the issues discussed in this article, please contact the Leukaemia Care team on 01905 755977 or email support@leukaemiacare.org.uk