Having a back-up plan

Have you thought about what happens to the person you care for if something happens to you? As well as planning ahead with them about their health and social care decisions it is important to think ahead about what might happen if you are suddenly unwell, have an accident, or have to go into hospital. Action for Carers in Surrey have designed a helpful carer emergency planning form (PDF) to be used alongside Surrey’s carer emergency card. 

1. Consider arranging a backup person to provide care if you cannot. Do you have a family member or friend who would be willing and able to be contacted if you find you are suddenly unable to care? Discuss with them what they would need to do and give them a copy of any emergency plans. 
2. Consider developing an emergency plan which documents key important information about the care and treatment of the person you care for. Leave it in a prominent place in their home so it can be easily seen, or leave a ‘message in the bottle’. You can also give this information to the backup carer and key professionals involved in the person’s care.
3. For all you need to consider look at your emergency plan. If you are not able to care and there is no suitable back-up carer, contact your local social care team. They can arrange for a paid care worker to come to the person you care for home or arrange for them to go into a care home, nursing home, or hospice. 
4. Ask for a carer’s assessment. The person you are caring for can also have a social care needs assessment. Both these assessments should include a discussion about what happens in emergencies and what needs to be put in place if you fall ill.
5. Consider getting a carer’s emergency card. The card is provided free of charge. It includes emergency contact numbers for two friends or neighbours who may be contacted to step in and help and should be carried in your bag or wallet at all times. Email asc.infoandadvice@surreycc.gov.uk for a card/leaflet.

An important aspect of advance care planning is to explore with the person you care for how and where they wish to be cared for now, in the future, and also in their final days. These may be different places including home, residential or nursing home, hospital, or hospice. It’s important to bear in mind what is important to one person may not be important to another and the person you care for may also change their mind.  

There are a number of important factors that need to be explored when deciding where to be cared for.

These may include where:

1. pain and discomfort can be best managed
2. appropriate specialist care can be provided
3. the person can be close to the people or pets they most love
4. the person can be in familiar surroundings with familiar belongings
5. dignity, privacy, and respect can be best provided

It may not be possible to provide the care the person you care for needs in the place they would like, for example, if a lot of specialist care is needed it might not be possible for them to stay at home.

Not only may the person you care for change their mind about where, but you may change your mind about how willing and able you are to care. If things are going differently to how you expected plans can be changed. This is fine. Making a decision now doesn’t mean it can’t be changed.

Talking about how to pay for end of life care is an important consideration when discussing where to be cared for. There are lots of different sources of help with end of life care costs and sometimes it is difficult to work out what you may or may not be entitled to. To help with this go to Funding End of Life Care.

1. Seek clarity about the type of care the person you care for wants at the end of life that might influence where end of life care is best provided.
2. Discuss the options of where to die with the person you care for, outlining the pros and cons of each option. If their preference is to receive care at home there is a Which guide to ‘How to get end of life care at home.’
3. If the person you care for is not sure, talk with other family, their GP, and other health or social care professionals involved in their care. Discuss diagnosis, prognosis, and type of care they might need, and which setting might be right for them and you in your caring role.
4. Think about what care you and their family are able and willing to provide, not just now but also in the future and the person’s final days. Bear in mind the nature and level of support you feel able and willing to provide is likely to alter as the person’s care needs change.   
5. Consider the nature of your caring role and what you want it to look like towards the end of the person you care for life for example focus on shared activities, and creating memories rather than providing hands on care. If you’re considering sharing your home you need to know what this means to both you and your family. 
6. When decisions about where have been made it is important the person you care for and/or you tell other family, friends, and health and social care professionals.
7. Encourage the person you care for to make a record of where they want to be cared for in an advance care plan.