Who will look after me if I have advanced cancer?
There may be times when you need a great deal of help and support from doctors, nurses and other carers, for example if you are having treatments such as chemotherapy or if you have troublesome symptoms.
But at other times you may need very little input from your healthcare team, perhaps just seeing them for check-ups. If you’re having treatment, such as chemotherapy, hormonal therapy or radiotherapy, you will be under the care of a cancer specialist (oncologist) and will usually go to the hospital regularly for check-ups. At other times, the care you receive at home will be more important, and a number of people and organisations working closely together may be involved in your care.
See caring for someone with advanced cancer for helpful information on the support available to you and the people caring for you.
Support is available for people being looked after at home, and help is also available for their carers. Unfortunately the availability of this support varies from one area of the UK to another. Your GP or social worker will probably be the best person to advise you on what’s available in your area.
The following is a brief guide to the people who are most likely to be involved in your care when your cancer is advanced.
General practitioner (GP)
Overall responsibility for your care when you’re being looked after at home lies with your GP. Your GP is also responsible for prescribing any drugs you need, and for arranging admission to a hospital or hospice if necessary. They will assess your need for nursing and medical care, and arrange the necessary help. Once home care arrangements have been set up, you’ll probably see the community nurse more regularly than your GP.
Care from nurses
Community or district nurses can pay regular home visits. They offer nursing care services, which may include changing dressings, giving medicines and giving support to carers. They can also arrange practical aids such as pressure-relieving mattresses or commodes.
Palliative care or symptom control nurses (sometimes known as Macmillan nurses) are specialists in pain and symptom control, and in giving emotional support to patients and their families. They may be based in hospitals or hospices, or visit people in their own homes. They don’t usually provide daily nursing care, but can visit you regularly to check on your symptoms and support you. In some cases, they can teach you or your carer how to give necessary medicines. They may also be able to give you information about certain financial benefits you can apply for. Palliative care nursing services are free. Your GP or your doctor or nurse at the hospital can arrange a palliative care nurse for you.
Marie Curie nurses are available in most parts of the UK. They can provide one-to-one overnight nursing from a registered nurse or senior healthcare assistant in your home, usually for eight or nine hours. In some parts of the UK, they also offer shorter shifts, evening shifts and day shifts. The services of Marie Curie nurses are free of charge, and are usually arranged through the district nurse. In consultation with you and the person caring for you, the district nurse will decide what hours of care are needed.
Home care teams
These are usually based at a hospital or hospice, but work with patients at home. The teams commonly include specialist nurses (often palliative care nurses) who have had training in symptom control and emotional support. Sometimes the team includes a doctor who may share your care with your GP.
Support from other professionals
Psychologists may be able to help if you have anxiety or depression, and can look at ways to help you cope with your situation. They can also help with relationship problems or if there has been a breakdown in communication in your family.
Occupational therapists working in the community can help you maintain your independence at home. After an initial assessment, they may be able to arrange for aids, such as toilet frames, handrails or a wheelchair, to be delivered. They can also arrange for minor adaptations to be made your home, such as door-widening or fixing safety rails in bathrooms. If you have difficulty dressing, they may be able to suggest and arrange alterations to clothing.
Your GP or community nurse can put you in touch with a physiotherapist. They can help to keep you mobile and also help to relieve pain with treatment, massage and exercise programmes.
Help from social services
An assessment of your needs can be made through a social worker, a manager, or through hospital or community social services. You may have to contribute towards the cost of some services.
Care attendants/carers come into the home to help in various ways - either with jobs around the house, such as cleaning, washing and cooking, or just to sit with you. They can also give some physical care with tasks such as washing and dressing. Some care attendant schemes provide someone to be there at night. Your local social services department, or Crossroads, will be able to tell you about schemes in your area.
Home helps offer a variety of services including domestic help, cleaning, washing, cooking and shopping. Home helps are available in some parts of the UK. Other districts, unfortunately, provide no service at all. Your local social services department, social worker, community nurse or GP will know the situation in your area.
Other sources of help at home
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British Red Cross volunteers can help you in many ways. These include shopping and errands such as posting letters and changing library books. They also lend equipment, such as wheelchairs and commodes, and provide a service to take you to hospital.
In many areas there are volunteer schemes through which you can arrange for someone to visit your home to provide company for you and a break for your carer. You can contact your local Community Volunteer Service or the Volunteer Bureau to find out what is available locally. You could also check notice boards in your GP’s surgery, your local library, community centre or church.
Hospital and hospice care
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If you have troublesome symptoms or need additional support, your doctor or nurse may refer you to a hospice or palliative care (symptom control) unit in a hospital.
What is a hospice?
Hospices are places that specialise in symptom control and the care of people who need help towards the end of their lives. Some are set up as part of the health service and others are funded by a charity. They do not give long-term care. Hospice care is always free. Sometimes there may be a waiting list, but this is not usually longer than a few weeks.
Services offered by hospices
Hospices can offer a variety of services in addition to symptom control, such as physiotherapy, complementary therapies, counselling, spiritual care and bereavement support.
Most hospices have day centres, where people can go for one or two days a week. They often also have home care teams of nurses from the hospice who visit people in their own homes. Sometimes people go into hospices for short stays of a few days. This may be to get their symptoms under control or to give carers a break and patients a change of scene (respite care).
Hospices are often purpose-built and are designed to be attractive and comfortable. They are smaller and quieter than hospitals and work at a gentler pace. Many have kitchens, sitting rooms and accommodation for relatives. They also organise a variety of activities for people who are well enough to take part.
You can find out more about your local hospice from your GP or by contacting Help the Hospices. If you aren’t sure whether hospice care is right for you, you can ask to visit first. Staff know that people often need to see the hospice for themselves before making a decision, and will be happy to show you around and answer your questions.
A residential home or private nursing home can be an alternative source of accommodation. They may offer short-stay or respite care, but usually also offer long-stay care. Your GP, district nurse or social worker can arrange this for you.
A fee is charged at private nursing homes and residential homes. You may be able to get free care if you are eligible, following an assessment by a social worker or care manager. Availability of care varies from area to area and can take a while to organise.
Lists of registered care homes, and details of registered nursing homes, are available from your local social services department and your area health authority. You can get information about finding a nursing home and related issues, from the Nursing Home Fees Agency or through the NHFA care advice line on 0800 99 88 33begin_of_the_skype_highlighting 0800 99 88 33 end_of_the_skype_highlighting.
One of the first things anyone diagnosed with cancer is likely to wonder is if they are going to die. This fear can become more intense if you are told that your cancer has spread or come back. For some people, cancer can become like any other chronic illness - something that causes problems from time to time, but that can be controlled. You may be able to lead a nearly normal life, even if the cancer is not curable.
Sometimes, though, the cancer develops and there may come a time when you realise that you will not recover. You may have decided that you don’t want further treatment.
People who are seriously ill, and the people close to them, will sometimes find themselves lost for words. But often simply being with loved ones is enough. A loving look, a hug or a squeeze of the hand can make words unnecessary. Tears are also very natural - you don’t have to put on a brave face. If you try to hide your feelings, you and the people you love may not get the chance to say what’s in your hearts.
You may find that your need for company and activity varies from day to day. Some people find they gradually need fewer people around them. As their energy fades, they may want to see only their partner, family or closest friends.
Some people don’t want to be left alone at all during this time. If you are being looked after at home, friends and relatives may be able to work out a rota so that there’s always someone there. Hospitals and hospices can often arrange for a partner, relative or friend to stay overnight, every night. Many people find a sense of peace and appear to be ready to ‘let go’ when the time comes.