Support at home after leaving hospital
GP (general practitioner)
After leaving hospital, your GP is responsible for your health at home.
If you have been told to book an appointment with your GP after you leave hospital, it is important to do this. Always tell your GP you have been in hospital having treatment for cancer. It is important to let them know if you are still having chemotherapy or other cancer drugs.
Your GP can:
- assess if your health has changed
- help you manage side effects
- help you manage symptoms
- do home visits if you need them
- prescribe medicines and arrange repeat prescriptions
- give you information and support
- organise nursing help if needed, such as district nurses, or specialist palliative care nurses
- refer you to other health professionals, such as a physiotherapist or occupational therapist (OT).
District and community nurses
District nurses work closely with GPs. They can regularly visit patients and their families at home. They provide help, advice and support with the practical aspects of nursing care.
Your ward nurse or keyworker may contact your local district nursing service before you go home to arrange a home visit. Not everyone needs this type of help. If you are well enough to go to your GP surgery to see a practice nurse, for example to have stitches taken out, you will not need a district nurse visit.
A district nurse or a community nurse will assess your healthcare needs. Community nurses work with district nurses to care for people at home.
The district nurse can:
- support you and a carer, and give advice to keep you as independent as possible
- help you manage your medicines at home
- give injections, change wound dressings or remove stitches
- help with managing stomas, catheters, feeding tubes and central lines
- give advice on eating well (nutrition), looking after skin and pressure areas, and bowel or bladder problems
- refer you to other health or social care professionals you may need.
Occupational therapist (OT)
OTs can look at how you manage day-to-day activities. They can suggest and arrange practical changes to make your home safe, comfortable and easy to live in.
OTs can also arrange support if you have difficulty moving around or doing everyday activities. These activities might include dressing, washing and cooking. They can also show you how to save energy while doing these activities.
If you might need adaptations or equipment, a hospital OT will assess you while you are still in hospital. They might also assess whether you need help doing everyday activities.
Sometimes they need to visit your home to assess your needs. If this happens, it can be done with you, or a family member or carer. Sometimes the hospital OT will ask a community OT to do this assessment when you go home.
After the assessment, the OT will give you information about adaptations, aids or equipment that might be right for you. If you agree, they can arrange any equipment you need for when you go home. Adaptations to your home can sometimes take a while to put in place. You may be discharged before these are done, but only if it is safe for you.
The OT may think it would help for carers to come and help you with your personal care or preparing meals. If they think this is needed, they will refer you to the social work department who will organise this.
If you have problems walking or moving around while you are in hospital, you will be referred to a physiotherapist. The physiotherapist will assess your needs. They will then work with you to improve how you get around (mobility) before you go home. If you need mobility aids (such as a walking frame) when you go home, they can also arrange this.
If they think you will still need physiotherapy when you go home, they can arrange an outpatient appointment at the clinic for you. Sometimes, they may arrange for community physiotherapy.
You may see a dietitian while you are in hospital. A dietitian can review your diet and talk to you, your family or a carer about any special diet you may need when you go home. They can give you advice on which foods are best to help your recovery. They can also provide food supplements if you need them. You may be referred to a community dietitian who will visit you when they go home.
If you need help to prepare meals, your family or carers may be able to help. Or you can talk to social services (below). It may be possible for you to have meals provided at home (sometimes called meals on wheels). This service usually has to be paid for. They offer different meals that can be made to suit your cultural and religious needs and any special dietary needs. There are also commercial companies that deliver the same type of service.
If you are having problems with leakage (incontinence) from your bladder or bowel, it can be difficult to manage. It can also be upsetting for you. Your district nurse will give you information on how to manage this. They can supply things like pads to help you. They can also refer you to a clinic to see a continence adviser if you need to.
A continence adviser will assess your problems. They can give advice about different products you can use to help manage continence problems. You may also be able to get help with laundry services through social services (below). You can get more information from the Bladder and Bowel Community. We have more information about managing bladder and bowel problems.
Palliative care team
When you go home from hospital, you may need specialist help with symptoms caused by the cancer, such as pain. Your GP, hospital doctor, nurse or keyworker can refer you to a community palliative care team.
Palliative care teams include nurses and doctors who specialise in controlling symptoms and giving emotional support. They are usually based in hospices and visit people who are being cared for at home. They work closely with GPs, district nurses and other hospital services. Palliative care nurses do not provide physical (hands-on) care.
If you need to, they may also arrange for you to go to a day centre, if your local hospice has one.
Macmillan nurses specialise in controlling symptoms caused by cancer, and giving emotional support. They also support people going through cancer treatment. Some Macmillan nurses have expert knowledge of a particular type of cancer. They may be based in hospitals, hospices or sometimes in the community. Macmillan nurses do not provide physical (hands-on) care.
Some people can get help at home from a private nurse. But this can be expensive. There are many private nursing agencies. You can ask the GP, district nurse or your local social services for advice. Look in your local phone book under ‘nursing agencies’ or search online.
Private agencies providing care at home must be registered:
A social worker is responsible for assessing what practical and social help you need. A social worker may sometimes be called a care manager. While you are in hospital, you may be referred to a hospital social worker, care manager or assessment officer if you need help with:
- preparing meals
- personal care such as washing and dressing
Getting a social care needs assessment
A social worker can visit you to do a needs assessment. The local authority will then decide if they will provide any services. Each local authority has its own eligibility criteria, so the services that are provided will be different depending on where you live.
If the local authority agrees that you have high needs, it must provide you with services to meet those needs. Help can be provided by social services or arranged with other organisations such as charities. The services they might provide include:
- meals at home (meals on wheels)
- home care (home-helps and personal care assistants)
- someone to sit with you while your carers have some time for themselves (sitting service)
- equipment and adaptations to your home
- benefits advice
- a laundry service for people with incontinence
- respite care for carers, to give them a break.
Some services are paid for by the NHS, so they are free of charge. But you may need to pay for other services. You will have a financial assessment (means test) to see if you have to pay anything.
Voluntary organisations and charities are important in providing help and support to people at home, and their carers. The help they offer includes:
- loans of aids and equipment
- grants for aids and equipment
- holiday schemes
- financial help
Your specialist nurse or keyworker should be able to tell you about local voluntary organisations and charities. You can also speak to our cancer support specialists on 0808 808 00 00.
You may need emotional support as well as practical help when you go home. You might feel worried or scared. It is natural to feel like this when you are not sure what is going to happen. It may make you feel irritable, anxious and frightened.
There is specialist help available if you need help coping with difficult emotions. Many people find it easier to talk to someone who is not directly involved with their illness.
If you would like to be referred to a counsellor, speak to your specialist nurse or cancer doctor about this before you go home. They can refer you to a doctor, counsellor or social worker who specialises in the emotional problems that affect people with cancer.
After you come home from hospital you might find it helpful to talk to others who have been in a similar situation. Joining a support group for people affected by cancer can give you or your carers the chance to talk to others who understand what you are going through. The nurses in the hospital may be able to give you information about local support groups. For more information about support groups, call our cancer support specialists free on 0808 808 00 00.
You may want to join an online support group or chat room for people affected by cancer. On our Online Community, you can speak to people in our chat rooms, talk about your experiences, share your thoughts and feelings, make friends and join support groups.