Who can help if I have advanced cancer?
There may be times when you need a lot of help and support from doctors, nurses and other carers, for example if you’re having treatments such as chemotherapy. There may be times when you need very little help from your healthcare team, and you might only see 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). You will usually go to the hospital regularly for check-ups.
If you’re no longer having treatment to control the cancer, you might be referred to a palliative care doctor. These are specialists in controlling symptoms such as pain. They’re usually based in hospitals and hospices. The care you receive at home will also be important, and a number of people and organisations working closely together may be involved in your care.
In this section we’ve listed the people who are most likely to be involved in your care when your cancer is advanced.
Our section on caring for someone with advanced cancer gives 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 amount of support available varies across the UK. Your GP or social worker can advise you on what’s available in your area.
GP (general practitioner)
When you’re being looked after at home, your GP has overall responsibility for your care. 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.
Community or district nurses can make regular home visits. They offer nursing care services, which may include changing dressings, giving medicines and supporting 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) specialise in pain and symptom control. They’re also specialists in giving emotional support to patients and their families. They may be based in hospitals or hospices or they might visit people in their own homes. They don’t usually provide daily nursing care, but they 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 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. You can get 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. They’re usually arranged through the district nurse, who talks to the patient and carers to decide what hours of care they need. Find out more about Marie Curie.
Home care teams
These are usually based at a hospital or hospice, but they work with patients at home. The teams usually 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. They can look at ways to help you cope with your situation. They can also help with any relationship problems, or if there’s been a breakdown in communication in your family.
Occupational therapists working in the community can help you keep your independence at home. After an initial assessment, they may be able to arrange for aids to be delivered, such as toilet frames, handrails or a wheelchair. They can also arrange for small changes to be made to your home, such as fixing safety rails in bathrooms or making doors wider. If you have difficulty dressing, they may be able to suggest and arrange alterations to your clothes.
Your GP or community nurse can put you in touch with a physiotherapist. Physiotherapists can help keep you mobile. They also offer treatment, massage and exercise programmes to help relieve pain.
You can be referred to social services by your hospital, GP or district nurse. The social worker can then make an assessment of your needs. You may have to contribute towards the cost of some services. Where no alternative exists, you can apply to us for a Macmillan Grant.
Social services can arrange for care attendants or carers to come into your home to help in various ways. They can either help with jobs around the house, such as cleaning, washing and cooking, or they can just come and sit with you. They can also help with some personal tasks, such as washing and dressing. Some care attendant schemes provide someone to be there at night. Your local social services department, or Carers Trust, will be able to tell you about schemes in your area.
Social services can also provide home helps. Home helps offer a variety of services, including domestic help, cleaning, washing, cooking and shopping. They’re available in some parts of the UK, but unfortunately some areas provide no service at all. Your local social services department, social worker, community nurse or GP can tell you what’s available in your area.
Other sources of help at home
British Red Cross can help you in lots of ways. Its volunteers can help you with shopping and with errands like posting letters and changing library books. It also lends equipment, such as wheelchairs and commodes, and provides a service to take people to hospital.
Lots of areas have volunteer schemes that can arrange for someone to visit your home to provide company for you and give your carer a break. You can contact your local Community Volunteer Service or the Volunteer Bureau to find out what’s available locally. You could also check notice boards in your GP’s surgery or your local library, community centre or church.
Hospital and hospice care
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If you have troublesome symptoms you may 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 specialise in symptom control. They also care for people who need help towards the end of their lives. Some hospices 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 isn’t usually longer than a few weeks.
Services offered by hospices
Hospices can offer a variety of services in addition to symptom control. These include physiotherapy, complementary therapies, counselling, spiritual care and bereavement support.
The hospice day centre is great. I’ve done art therapy, and I have acupuncture. The other patients are very supportive.
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, 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 them a change of scene (respite care) and give their carers a break.
Hospices are often purpose-built and are designed to be attractive and comfortable. They’re 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 (helpthehospices.org.uk). 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 before making a decision. They will be happy to show you around and answer your questions.
We have more information about hospices including a video with a hospice volunteer.
A residential home or private nursing home is another option for somewhere to stay. 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.
Private nursing homes and residential homes charge a fee. You may be able to get free care if you’re 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.
If you have a pet and are concerned about them while you’re in hospital or having treatment, there are organisations that offer services such as dog walking. Sometimes they have people who can foster pets if needed.
We have more information about getting help with pet care when you’re ill.
Although the future may seem uncertain, for many people it’s important to plan ahead. It can help to consider important issues while you’re well enough to do so. For example, you might want to decide where you want to die, make a will or write an Advance Decision to Refuse Treatment.
You can talk to your GP, palliative care nurse or district nurse about how you wish to be cared for at the end of your life. Knowing what your wishes are can help guide your carers, for example if you decide you’d like to die at home. You’ll be regularly assessed so your doctor or nurses can plan any practical support for you and your family as your needs change. This might mean arranging for you to be cared for in the hospital or hospice, or arranging for hospice services or Marie Curie nurses to come to your home.
Our Online Community is open 24 hours a day to help you find support, whatever the time of day or night. You can share your experiences with people who know what you're going through. Join us at www.community.macmillan.org.uk