Medical and nursing help at home for someone with advanced cancer
To help you care for your relative or friend at home, you can get support from the medical and nursing staff in the community.
One member of the community team will usually be identified as your key worker. They will be your first point of contact and can help you get help and support from all the other members of the community team.
The GP (family doctor)
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A GP has overall responsibility for the healthcare of ill people being looked after at home. They can:
organise nursing help if needed - for example, visits from a district or palliative care nurse, physiotherapist or occupational therapist (OT)
arrange for the person you’re caring for to go into hospital or a hospice
make arrangements for respite care.
If the person you are caring for has moved to your home from another area since they became ill, you will need to register them with a local surgery. Let their old GP know what has happened, and register at the new surgery on their behalf.
You will need the name and address of the previous doctor and, if possible, the person’s NHS medical card.
Contact the GP if you are worried about something - for example, a sudden change in behaviour or symptoms in the person you are caring for. They may be able to talk you through the problem on the phone or make a home visit.
GP surgeries must provide a 24-hour service, although you may get through to a locum (temporary stand-in) doctor if you ring out of hours.
Many people with cancer in the UK can get free prescriptions. The GP surgery or hospital staff can tell you whether the person you are looking after qualifies. They can also give you an application form for a medical exemption certificate for the person you are looking after.
The district nurse (sometimes known as a community nurse) is a key person in the care of someone who is ill at home.
They can visit regularly to give a range of nursing care, including giving tablets and injections, changing dressings, and giving advice on nutrition, pressure area care, bowel problems and incontinence. They can show you how to do everyday nursing tasks such as washing, moving the person, and personal care, and can also arrange for special equipment to be delivered, such as a:
hoist or sling
The hospital should let the district nurse know that the person you’re caring for is coming home, or the GP may arrange for them to visit.
The first home visit you have will often be from a district nursing manager, who has overall responsibility for the nursing help you are given. They will talk to you about the care that will be provided. After that, the district nurse will make regular visits. Usually, you’ll see the same one or two nurses.
District nurses may be able to visit up to three times a day; in the morning, afternoon and evening, although this may vary depending on the services available in your area. Some areas also have night staff, who can attend in an unexpected, but not emergency, situation. Sometimes a nursing assistant will help the district nurse with things like bathing and washing. Your social worker can also organise help with bathing.
Community palliative care team
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Palliative care teams specialise in pain and symptom control, as well as offering emotional support. These teams are usually based in the local hospice or occasionally in a hospital.
They include specialist nurses who work with the local community services to visit people with cancer being looked after at home. Palliative care nurses are sometimes referred to as Macmillan nurses. They will liaise with the GP, district nurses and other hospital services. They can often give many of the benefits of hospice care but in your own home. They give advice to help control pain and other symptoms.
Palliative care teams can also offer emotional support and advice on practical problems. As these teams are based in the hospice or hospital, they can often form a link between the home and the specialist nursing and medical services.
If any problems arise, a member of the team can often get the necessary help fairly quickly. Palliative care specialist nurses are often available seven days a week, although not usually during the night.
If you need extra nursing help, especially during the night when the district nurses or palliative care specialist nurses don’t usually visit, your key worker or a member of the palliative care team might suggest that a Marie Curie nurse visits you. This can be either a registered nurse or a senior healthcare assistant. Marie Curie is a charity and their nurses are trained to look after people with palliative care needs. They specialise in giving practical nursing care and can spend the night or part of the day in your home, giving you a break.
The district nurse assesses the level of nursing care needed, but Marie Curie nurses are normally available during acute illness or the last few months of someone’s life. The services of Marie Curie nurses are free and are usually arranged through the local district nursing manager.
If the person you’re looking after is having trouble controlling their bladder and/or bowels (incontinence), it can be emotionally and practically difficult for both of you. Your district nurse will be able to help you and may suggest that a continence adviser visits you. This is a specialist nurse who can give advice and information about aids and equipment to help you both cope with continence problems.
If the person you are caring for has mobility problems, the GP, district nurse or specialist palliative care team may recommend a physiotherapist to help keep them as mobile as possible.
Physiotherapists can also give advice and help with pain relief and breathing exercises.
Physiotherapy services aren’t always available, but if you think it would help your relative or friend, contact your GP, district nurse or home care team.
Occupational therapist (OT)
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Occupational therapists (OTs) are mainly concerned with practical ways of making a home safe, comfortable and easy to live in. They help people who have difficulty moving around or doing everyday tasks such as dressing, washing or cooking.
OTs can suggest and arrange for minor adaptations to be made to your home. They can also order useful equipment that will make life easier for you, such as a wheelchair, gadgets to make bathing easier, or specially adapted cutlery.
Your social worker or district nurse should be able to arrange for an OT to visit your home.
Private nurses (agency nurses)
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Private nursing is available. However, it’s very expensive and may only be practical as a short-term solution, or if you’re working and it’s essential there’s a carer at home while you’re out.
There are many private nursing agencies which can supply qualified nurses to come into your home. Try to use an agency that has been recommended to you, or ask the local social services or a carers’ or cancer support group for advice. Our cancer support specialists can give you details of cancer support groups in your area.
Your local phone books will list agencies under the heading ‘Nursing Agencies’ or you can search online.