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Your GP is the doctor who will have overall responsibility for your care. However, if you’re having treatment such as chemotherapy or radiotherapy, you will usually go regularly to the hospital. At other times, the care you receive at home will be more important, and a number of people and organisations may be involved, working closely together.
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 is available in your area. Support organisations will also be able to give you information.
The following is a brief guide to the people who are most likely to be involved in home care for someone with advanced cancer.
Overall responsibility for your care when you’re being looked after at home lies with your GP. GPs are also responsible for prescribing any drugs you need, and for arranging admission to a hospital or hospice if necessary. They will assess your needs for nursing and medical care, and arrange the necessary help. Once the home care arrangements have been set up, you will probably see the community nurse more regularly than your GP.
Community or district nurses can pay regular 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 hospital, 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 give advice. In some cases, they can teach you or your carer to give necessary medicines. They may be able to advise you 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 and give a limited amount of day or night care in the home. The usual demand is for night nursing, so that the carer can get some rest. The services of Marie Curie nurses are free of charge and are usually arranged through the district nurse.
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.
Psychologists may be able to help if you have anxiety or depression, and can look at ways to help you cope with everything that is going on. They can also help with relationship problems or if there has been a breakdown in communication within the family.
Occupational therapists, working in the community, can help to 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 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.
You can be put in touch with a physiotherapist by your GP or community nurse. They can help to keep you moving about, and also help to relieve pain with treatment, massage and exercise programmes.
Care attendants come into the home to give help of various kinds – either with jobs around the house such as cleaning, washing and cooking or just to sit with you, perhaps to give your carer some time off. They can also give some physical care 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. 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. Where no alternative exists, you can apply for a grant from Macmillan Cancer Support.
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.
The Red Cross has a branch in every county and thousands of volunteers who can help you in many ways. These include shopping, posting letters and changing library books. They also lend equipment for nursing someone at home, such as wheelchairs and commodes, and provide an escort service to take people to hospital.
The Disabled Living Foundation runs an information service. It has specialist advisers on incontinence and clothing, and occupational therapists and physiotherapists can give personal advice on aids and equipment. Its showrooms have more than 2,000 pieces of specialist equipment on display, from special cutlery to walking aids and wheelchairs. You can ask them for a catalogue.
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, and you could see if any information is displayed on notice boards in your GP’s surgery, your local library, community centre or church.
If your illness develops, your doctor or nurse may suggest that you would be more comfortable being looked after in a hospital or hospice. This may only be for a short time so that your symptoms can be controlled, and you will then be able to go home again. Some hospitals have specialised units (palliative care units) which offer similar care to a hospice.
Hospices are places which specialise in symptom control, and also the care of people who are dying. The emphasis is on controlling symptoms such as pain, and supporting the person with cancer and their family. Hospices are smaller and quieter than hospitals and often work at a gentler pace. Many offer bereavement support to relatives.
There are now more than 200 hospices in the UK. Many have home care teams and day centres for people living at home. Some are set up as part of the health service and others are funded by 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.
You can find out more about your local hospice from your GP or by contacting the Hospice Information service.
Hospices can offer a wide range of services such as symptom control, physiotherapy, complementary therapies, counselling, spiritual care, and bereavement support.
Some hospices work mainly through day centres, where people can go for one or two days a week. Often they have home care teams – and nurses from the hospice visiting people in their own homes. Some hospices have beds for inpatients and these are often used for short stays, to get troublesome symptoms under control or to give carers a break and patients a change of scene. This is known as respite care.
Many hospices are purpose-built, in pleasant grounds, and are designed to be attractive and comfortable. Many have kitchens, sitting rooms and accommodation for relatives. They also organise a range of activities for people who are well enough to take part.
It is normal to feel sad if you can no longer manage at home. You may also feel anxious, and worry about not being able to go home. These feelings may be eased by the benefits of staying in a hospice and being looked after by nurses and doctors who specialise in this sort of care. If you or your relatives aren’t sure whether it is right for you, you can ask to visit first. Staff know that people often need to see for themselves, and will be happy to show you around and listen to your concerns.
A residential home or private nursing home can be an alternative source of accommodation. They usually offer short-stay or respite care, but sometimes 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 at www.nhfa.co.uk or through the NHFA Care Advice line on 0800 99 88 33.
Macmillan Cancer Support is a national charity and we rely on voluntary donations. To donate, please call Supporter Services on 020 7840 4900. Thank you.