Care and support if you have advanced cancer
What care and support is available?
There may be times when you need a lot of help and support from doctors, nurses and other carers. For example, this could be if you are having treatments like chemotherapy or immunotherapy, or if you need help managing symptoms. But at other times, you may need very little help from your healthcare team.
Hospital care
If you are having treatments such as chemotherapy, targeted therapy, hormonal therapy or radiotherapy, a cancer doctor will look after you. You will usually have regular check-ups with the hospital team. These might be face to face or by a phone or video call.
You might be referred to a palliative care team. This is a team of specialists who can help you manage symptoms such as pain or feeling sick (nausea). They can also offer psychological support. They are usually based in hospitals and hospices.
Care at home
You may want to be at home as much as possible. But you may need some nursing care or support from other professionals to help you manage. Having support can help both you and your carers.
The support and services available are different across the UK. Your GP or social worker can talk to you about what is available in your area.
GP
Your GP has overall responsibility for your care when you are at home. They can prescribe any drugs you need and arrange help from other professionals. They will also arrange for you to go into hospital or a hospice if needed.
Nurses
When you are being looked after at home, your GP has overall responsibility for your care. They are usually responsible for prescribing any drugs you need. They will also arrange for you to go into hospital or a hospice if needed.
Other healthcare professionals working in the community can also assess your nursing and medical care needs. This might include a community or palliative care nurse. Your GP and the community professionals can arrange help for you and your family.
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Community or district nurses
Community or district nurses can make regular home visits. They provide nursing care such as changing dressings, giving medicines and supporting your carers. They can also arrange practical aids, such as pressure-relieving mattresses or commodes.
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Palliative care nurses
Palliative care nurses may be called different things, including palliative care clinical nurse specialists or hospice specialist nurses. Palliative care nurses are sometimes called Macmillan nurses. But not all Macmillan nurses specialise in palliative care.
Palliative care nurses are experts in managing pain and other symptoms. For example, they can advise you about pain medicines if your pain is not well managed. They also give emotional support to you and your family, partner or friends. A palliative care nurse may speak to you on the phone or visit you at home to see how you are and make sure any symptoms are being managed. They can also refer you to any other services provided at your local hospice. Palliative care nursing services are free. Your GP or your doctor or nurse at the hospital can refer you.
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Marie Curie nurse or healthcare assistant
In some parts of the UK, you can get support from a Marie Curie nurse or healthcare assistant. A nurse can advise you about medication. A healthcare assistant can help with practical tasks such as washing and dressing. Marie Curie can sometimes provide nursing overnight from a registered nurse or healthcare assistant. Your GP or district nurse can tell you if Marie Curie nurses are in your area.
Other professionals
You may also get support from other professionals at home:
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Occupational therapists
Occupational therapists working in the community can help you keep your independence. They can assess your situation and arrange for any aids or changes you need. Aids might include toilet frames, handrails or a wheelchair. A change might be something like fixing safety rails in your bathroom or making doors wider.
An occupational therapist may be able to help you change your daily routines and activities to help you manage low moods. Some can also help you manage anxiety, fatigue and breathlessness.
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Physiotherapists
Physiotherapists can help keep you moving. They can advise you and your carers on the best and safest way for you to move around your home. They can also offer treatment and exercise programmes to help you manage symptoms such as pain, breathlessness and fatigue.
Social services
Social services can help if you find some everyday activities difficult. Social care can include getting help with:
- personal care, such as washing and dressing
- tasks like cleaning and cooking.
There are different ways to access social care. Your hospital team, GP or district nurse can refer you to social services. Or you can refer yourself.
You will have a needs assessment before any care is arranged. A social worker will ask you about your daily routine and what you find difficult. Sometimes an occupational therapist or nurse may do this instead.
Each local authority has its own assessment procedure. Local authorities will have information on their website. They can also provide an up-to-date list of local providers and can signpost you to services. You can find your local authority by visiting gov.uk/find-local-council
You usually have to pay towards the cost of services. This depends on your financial situation. If you have a lot of care needs, you may be eligible for funding for your care. Your GP or a social worker can tell you more about this.
If you prefer, you can arrange care privately. There are a lot of private organisations providing care, including overnight care. Any care provider must be registered with the Care Quality Commission. Your local adult social services department should be able to give you details of approved private agencies. You can also ask friends or family members for recommendations. The Homecare Association can also give you details of homecare providers that follow its code of practice.
Other sources of help at home
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Age UK
Age UK has more information about accessing care. Local branches may be able to help if you just need a bit of help with shopping, gardening or housework.
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British Red Cross
British Red Cross has volunteers that can help with shopping and tasks like posting letters and picking up prescriptions. It can also lend equipment, such as wheelchairs and commodes. Services vary in different parts of the country.
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Royal Voluntary Service
The Royal Voluntary Service has a range of services working throughout the UK. Their volunteers support people in need. They also assist the NHS if needed.
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Local volunteer schemes
There are local volunteer schemes in some parts of the country that can arrange for someone to visit you at home. They can provide company for you and give your carer a break. Check notice boards at your GP surgery, local library, community centre or church. Your local hospice may also know about volunteer schemes.
Hospice care
If you have symptoms that are difficult to manage, you may need extra support. Your doctor or nurse may refer you to a hospice or palliative care (symptom control) team in a hospital.
Hospices specialise in caring for people who have a life-limiting illness. They have doctors and specialist palliative care nurses who are experts in controlling symptoms such as pain and nausea (feeling sick). They also provide emotional support.
You can go into a hospice for different reasons. For example, you may stay there for a short time to get your symptoms under control. Some hospices offer respite care. This means you can go in for a short time to give your carer a break. Your palliative care team can tell you what is available at your local hospice.
You may decide that you would prefer to die in a hospice. You will need to discuss your wishes with your GP and the hospice team involved with your care. You may also want to talk about your wishes with close family members, friends or a partner.
Hospices are very different to hospitals. They are smaller and quieter, and aim to provide care to suit each person’s situation. Visiting is usually less restricted than in a hospital. As well as practical nursing care, they may offer other services for patients and their families. These may include counselling, complementary therapies, spiritual care and psychological support.
Accommodation and care in a hospice are free of charge. There is a limited number of beds in each hospice, so there may be a waiting list.
You can find out more about your local hospice from your GP, district nurse or palliative care nurse. Hospice UK also has useful information about hospices and where they are across the UK. If you are not sure about the idea of hospice care, you can ask to visit a hospice. The staff can show you around and talk through any questions or concerns you have.
Care homes
If you might need care for some time, you may prefer to be looked after in a residential care home, or care home with nursing (nursing home). A nursing home has qualified nurses on their staff to provide nursing care. They usually offer short-stay or long-stay care.
When you have advanced cancer, it is important to think about the care you might need in the future. Even if you do not have any nursing needs now, you may need nursing care as your illness progresses. Planning ahead can help you avoid having to move from a residential home into somewhere that offers nursing care if you need this.
Your GP, district nurse or social worker can arrange for you to stay in a care home, either with or without nursing care. They can explain the different types of care homes.
Many care homes are privately owned. However, some are run by a charity or the local council. You usually need to contribute towards the costs of staying in a care home. This depends on your financial situation.
NHS UK has information about care homes and funding for care. You may be able to get a list of local care homes from your local county council. Carehome UK also has information about care homes and funding.
About our information
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References
Below is a sample of the sources used in our advanced cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk
Health Improvement Scotland/ NHS Scotland. Scottish Palliative Care Guidelines. Available from www.palliativecareguidelines.scot.nhs.uk/ [accessed Nov 2021].
NICE. End of life care for adults: service delivery. NICE guideline NG142 [Internet]. 2019. Available from www.nice.org.uk/guidance/ng142 [accessed Nov 2021].
NICE. Improving supportive and palliative care for adults with cancer. Cancer service guideline CSG4 [Internet]. 2004. Available from www.nice.org.uk/guidance/csg4 [accessed Nov 2021].
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Reviewers
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Viv Lucas, Consultant in Palliative Medicine.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
The language we use
We want everyone affected by cancer to feel our information is written for them.
We want our information to be as clear as possible. To do this, we try to:
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We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.
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Date reviewed
Our cancer information meets the PIF TICK quality mark.
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