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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. Caring can be difficult to manage alongside a job, especially where its demands are unpredictable or may grow over time.

You are very likely to have carers in your organisation. The Carers Trust reports that in the UK nearly one in eight workers is a carer and that one in five carers give up employment to care.

This can be a big loss of talent, expertise and experience. Helping staff who are carers to cope with both roles makes good business sense, as well as being good employment practice.

Carers have legal rights which can be different in different parts of the UK. The law sets out basic entitlements but many employers go further.

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

You can find further links in the useful resources section.

Difficult conversations

Carers don’t have to tell the organisation about their caring role but a sign of a compassionate employer is that they feel confident to do so. This can involve difficult conversations about uncomfortable topics.

There is helpful guidance on the Hospice UK Dying Matters website about how to go about this, which HR can signpost line managers to.

Pre-bereavement

If someone has been suffering from an incurable illness, such as dementia, their family may begin the grieving process long before the person actually dies. 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. The legal right is to make such a request once a year but as a carer’s responsibilities can change, sometimes unexpectedly, your organisation may want to allow more frequent requests.

The member of staff and their manager may want to:

  • Try out a plan and see how well it works
  • Review it and agree any changes needed
  • Keep this conversation going.

A carer may need occasional leave for emergencies, for example if care arrangements break down unexpectedly which means they may not be able to give notice.

Your organisation can treat this as part of their annual leave or it may have a more flexible approach, such as a policy of offering paid emergency leave for a given number of days per year.

There may be occasions when a carer needs to spend several days at a time away from work. Some employers offer unpaid leave to allow for this. If this might affect the person’s eventual pension, you could allow for them to carry on making pension contributions for the time they are unpaid.

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 if they have been looking after someone at home, 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 a dying person, and they may want to spend as much time as they can with that person.

When someone has only a short time to live, every day can be precious. As a compassionate employer, you may want to have a policy allowing paid leave for carers so that they can be with their loved ones in their last months.

Flexible working options

Depending on how big your organisation is, how it is structured and what the carer’s job is, there are all sorts of variations on flexible working that you may be able to offer: 

  • flexi-time – employees may be required to work within set times but outside of these 'core hours' have some flexibility in how they work their hours
  • home working or teleworking – teleworking is where employees spend part or all of their working week away from the workplace and homeworking is just one of the types of teleworking
  • job sharing – usually two employees share the work normally done by one person
  • part-time working – employees might work shorter days or fewer days in a week
  • term-time working – employees don’t work during school holidays and either take paid or unpaid leave or their salary is calculated pro-rata over the whole year
  • shift-swapping or self-rostering – employees agree shifts among themselves and negotiate with colleagues when they need time off, with the process being overseen by managers
  • staggered hours – employees have various starting and finishing times meaning that goods and services are available outside traditional working hours
  • compressed hours – employees work their total hours over fewer working days, for example a 10 day fortnight is compressed into a nine day fortnight
  • annualised hours – employees’ hours are calculated over a whole year and then split into ‘fixed shifts’ and ‘reserve shifts’ which can be agreed on a more flexible basis.

Carer’s assessment

A person caring for someone who is disabled, ill or elderly is entitled to a carer’s assessment by their local council or trust.

If the council decides that the carer has eligible needs, the council have 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.

Guidance on the criteria is available from the Social Care Institute for Excellence and can help an individual decide whether or not to apply.

Services can be provided directly to the carer, or to the person they are looking after, or a combination of both.

Help available to carers

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, 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 looked 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.

Someone caring for a child with a life-limiting or terminal illness, provided they have been employed for more than a year, can take up to 18 weeks unpaid parental leave, up to a maximum of four weeks in a single year.

Organisations can be more generous if they choose.

Financial support

If someone is spending 35 hours or more a week on caring they may be eligible to claim carers’ allowance.

There is a cap on how much they can earn and still qualify. If an employee is having to reduce their hours, HR could signpost them to explore this option.

For an employee with caring responsibilities, HR can help in particular with:

Helping carers carry on working effectively by supporting flexible working. HR can also signpost carers to other forms of support, including financial help.

If your organisation is signed up to an EAP, that provider may be able to advise employees confidentially on issues such as the care of older people, and financial matters. Other forms of help could include:

  • Local networking groups where carers can offer mutual support and exchange experiences
  • Carer events and training such as falls prevention, stroke awareness, understanding dementia, understanding finance and benefits.

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