Before your friend or relative comes home
This page suggests some things to do if your friend or relative is about to be discharged from hospital to be cared for by you. If you have been looking after someone at home for some time, you may want to skip straight to the section on getting practical help and support.
Before your relative or friend comes home, it’s a good idea to try to talk to them about how they want to be looked after and how you can care for them. Even if they are physically frail and dependent, they may still want to be involved in making plans about their care. Excluding them from plans may make them feel isolated and increase their sense of dependence.
Together you can discuss where they would prefer to be looked after, whether that’s at home or in a hospice or hospital.
Help from family and friends
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If other family members and friends will be sharing the care, it’s a good idea to involve them in discussions at an early stage. You will then be able to see what each person can do, and where you may need further help. Bear in mind your other commitments such as work, family, etc.
You may find that you are asked to keep everyone informed as things change. This can be very stressful, particularly if you find you have to break bad news to a number of different people, then deal with the distress this brings them. You might like to think about asking another family member or a friend to help you do this.
Writing down their wishes
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The person you are caring for may like to write down their choices for care in a Preferred Priorities for Care (PPC) document, which is a type of advance care plan. As well as information about where your relative or friend would like to be, the PPC can also include details about other wishes they may have about their care, so that everyone knows what is important to them.
The PPC document can be kept with your relative or friend and used to tell health professionals and other carers what their wishes are. The information about their wishes can be helpful if, in the future, they become unable to make decisions about their care. Although the PPC isn’t a legal document, it is covered by the Mental Capacity Act 2005. This means that any wishes that are written in the document should be taken into account.
You can get further information about advance care planning from your relative or friend’s doctors and nurses.
Organising help and services
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Before your relative or friend gets home, all the practical help and services needed should already have been set up by the hospital or hospice staff together with the social worker. If there are a lot of things to consider, a case conference may be organised before discharge so that everything can be carefully discussed and planned. This is a meeting that’s usually organised by the ward staff and involves the doctor, nurses, an occupational therapist (OT), social worker and, if possible, community staff, as well as you and the person you are caring for. A case conference enables the person with cancer to be involved in planning their care.
As a carer, you should be involved in any discharge planning and never be left to take your relative or friend home without the support and practical help you need. If you aren’t sure of the arrangements that are being planned, talk to the nurses or ward manager. They can discuss the plans with you and arrange for you to see the social worker if needed. If you aren’t happy with anything that has been arranged, say so. Don’t agree to something you know won’t be helpful or miss out on something you think you need.
If you find it difficult to discuss your needs with the staff, try writing down what you want to say beforehand. You may also find it helpful to have someone else with you when you meet them. As well as giving you support, they can remind you of any points you may have forgotten, and make a note of the answers.
Remember that the arrangements can be adjusted later on if the situation changes. For example, when the person first goes home you may not need any help to look after them, but if they begin to get weaker a few weeks later, you may begin to need help with their personal care.
Ideally, the person you’re caring for should be given information from the hospital to bring home. The information may give details about medicines, dietary needs, and where to get help if you need it. If the information isn’t clear, ask for more details. You have the right to ask any questions you want.
GP and community services
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By the time your relative or friend gets home, the hospital or hospice staff should have informed the GP and/or the district (community) nursing team. You may also have a letter to give to the GP. During the first few days at home, the GP may visit.
If this doesn’t happen, contact the surgery and tell them that the person you’re looking after has just come out of hospital.
The sooner the GP makes contact with you both the better; even if you think you don’t need much help at the time.
Advance care planning is an opportunity for the person you are caring for to talk about what they would and wouldn’t like as they approach the end of their life. They may make an advance statement or advance decision of their wishes or have arranged a personal welfare Lasting Power of Attorney or Welfare Power of Attorney. Your relative or friend may want to make an Advance Decision to Refuse Treatment (ADRT).
This allows them to refuse treatments, such as resuscitation and other life sustaining therapies. An ADRT is legally binding and must be followed. You can get more information from NHS’s publication about ADRT.