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Someone caring for a person with a life-limiting or terminal illness

Carers are employees with significant caring responsibilities that have a substantial impact on their working lives.

These employees are responsible for the care and support of a child with a life-limiting condition, or a relative or friend who is older, disabled or seriously ill and unable to care for themselves.

Caring support can go on for years but can start suddenly when someone’s relative or partner becomes ill. Carers don’t always think of themselves as carers.

They can see it just as something they do as part of normal family life. They may not want to find themselves defined as ‘a carer’ when there is so much more to them.

Caring can be difficult to manage alongside a job, though. It can amount to a job in itself. The demands on carers can be unpredictable or may grow over time.

Carers have legal rights which can be different in different parts of the UK. As a line manager, you will want to be able to support your colleague so that they can do their job, as well as manage their caring responsibilities.

The first step is to talk to them so that you understand what their caring involves. It is up to them how much they want to share with you, but if they are happy to do so then you and they can work out the best solution.

There may be things that the organisation can help with directly, such as flexible working. You can also help by suggesting other possible sources of financial and practical help, such as a carer’s assessment or carer’s allowance.

Difficult conversations

Both you and your colleague may feel uncomfortable about raising the topic of death and dying. Even a confident individual can find it difficult to discuss when the person involved is close to them.

Your colleague is likely to feel sad and maybe uncertain about their role. It is not an easy situation but it is better to talk about it than to say nothing.

Your colleague may welcome the chance to talk, so even if you were expecting a practical discussion about managing work and leave, it is best to be prepared. You don’t have to say anything profound. You may find that your colleague just needs someone to listen.

Hospice UK’s Dying Matters website has a series of helpful guides to help with these conversations.

These conversations may be hard for you too. Be careful not to fall back on false reassurance, such as “I’m sure they'll be fine”. It is better to acknowledge the situation by saying something like “I’m sorry to hear she is ill”.

You can help by being clear about what the organisation can do to support, such as flexible working and compassionate leave. Your HR team will be able to advise you on your company’s current policies.

Pre-bereavement

If someone has been suffering from an incurable illness, such as dementia, their family may begin the grieving process long before the actual death takes place. They will need the same sort of consideration and support as they go through this pre-bereavement period as they will later on when the person has died.

Flexible working

The law gives employees the right to ask for flexible working once they have been employed for 26 weeks. To make it work as well as possible for everyone, you may find that it is best:

  • To try out a plan and see how well it works
  • Review it and discuss if you need to change it
  • Keep this conversation going.

Be prepared for a carer to need occasional leave for emergencies, for example if care arrangements break down unexpectedly.

If the person being cared for gets worse, or is about to die, they may need to spend time in hospital or in a hospice. This may change the carer’s practical role, but they will still need time to play their part.

For example, they may need to join in meetings with the professional staff looking after the dying person and they may want to spend as much time as they can with that person. Speak with your HR team to understand your policies on flexible working.

Carer’s assessment

If your colleague is caring for someone who is disabled, ill or elderly, they are entitled to a carer’s assessment by their local council or trust.

If the council decides that the carer has eligible needs, the council has a legal obligation to meet these needs if the carer wants them to. Some councils and trusts in England, Wales and Northern Ireland charge for carers support.

If they do, then they carry out a financial assessment to decide what, if any, contribution they charge. Carers in Scotland are not charged for support provided by the council.

You can find further links in our useful resources section.

It may be agreed that the best way to help the carer is by providing services directly to them, by providing services to the person they are looking after, or a combination of both.

Help available directly to a carer might be:

  • Help with transport costs, such as taxi fares or driving lessons
  • Costs for a car where transport is crucial, such as repairs and insurance
  • Technology, such as a mobile phone or computer where it is not possible to access computer services elsewhere
  • Help with housework or gardening
  • Help to relieve stress, improve health and promote wellbeing, such as a gym membership.

Help available through a carer’s assessment to the person being looking after might be:

  • Changes to their home to make it more suitable
  • Equipment such as a hoist or grab-rail
  • A care worker to help provide personal care at home
  • A temporary stay in residential care/respite care
  • Meals delivered to their home
  • A place at a day centre
  • Assistance with travel, for example to get to a day centre
  • Laundry service
  • Replacement care so the carer can have a break.

Financial support

If your colleague is spending 35 hours or more a week on caring they may be eligible to claim carer’s allowance. There is a cap on how much they can earn and still qualify, but this is an option you might want to discuss, especially if your colleague is having to reduce their working hours.

If your employer is signed up to an EAP, staff will have free access to a 24-hour confidential helpline offering information and advice. Some EAPs offer advice on issues such as care for older people and financial issues. Your HR team will know the details of what is available.

To be able to best support your colleagues, check with your HR team about what policies are in place and what benefits are available from your employer for someone who is a carer.

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