Practical help

Sometimes you may need a lot of support from your healthcare team but other times you may need less. You might be cared for at home, in hospital or in a hospice or care home.

If you are at home, your GP has overall responsibility for your care. You might be offered help from nurses who can visit you at home, such as community or palliative care nurse. You may get other help from carers, physiotherapists, occupational therapists, psychologists or social services. Talk to your GP to find out what is available in your area.

If you have troublesome symptoms, your GP may refer you to a hospice or a palliative care unit in a hospital. Some people go into a hospice for a short stay to help control their symptoms and offer support such as counselling and psychological support. Many hospices have day centres that people can visit once or twice a week if they want to.

Some people will have care in a care home. Some care homes are residential and some offer nursing care.

Practical help

There may be times when you need a lot of help and support from doctors, nurses and other carers. For example, this may be if you are having treatments like chemotherapy, or have symptoms that are worrying you. But at other times, you may need very little help from your healthcare team. You might only see them for check-ups.


Hospital care

If you are having treatment such as chemotherapy, targeted therapies, hormonal therapies or radiotherapy, a cancer doctor will look after you. You will usually go to the hospital regularly for check-ups.

You might also be referred to a palliative care team. This is a team of specialists who help you manage symptoms such as pain, and offer psychological support. They are usually based in hospitals and hospices.

I always try to plan in something nice on any hospital visit day. I pass a National Trust property on the way to hospital, or sometimes go for a walk, coffee or lunch.

Katrina


Care at home

Some people will need nursing care at home. There is help and support for people being looked after at home. This can help both you and your carers.

It is not possible to get 24-hour nursing care at home. The amount of support available is different across the UK. Your GP or social worker can tell you about what is available in your area.

We list here some of the people who are most likely to be involved in your care when your cancer is advanced.

GP

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 (see below) 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.

Nurses

  • Community or district nurses can make regular home visits. They can do 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.
  • Palliative care nurses are sometimes called Macmillan nurses. They are often part of the homecare team (see below). They specialise in managing pain and other symptoms. They are also experts in giving emotional support to patients and their families. Palliative care nurses may be based in hospitals or hospices (see below) and work closely with other healthcare professionals to provide support. They can often visit people in their own homes. They usually call or visit you regularly to see how you are and make sure any symptoms are being managed. For example, they can advise you about which medicines to take if pain is a problem. They may also be able to tell you about certain financial benefits you can apply for. They can 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 arrange a palliative care nurse for you.
  • Marie Curie nurses are available in some parts of the UK. They provide one-to-one nursing overnight from a registered nurse or senior healthcare assistant in your home. The shifts are usually for 8 or 9 hours. In some parts of the UK, they also offer shorter shifts, evening shifts and day shifts. There may be differences in how much care they provide. Marie Curie nursing services are free. Usually your district nurse will arrange a Marie Curie nurse for you. The district nurse will talk to you and your carers to help decide what care you need.

Homecare teams

A homecare team provides care for you in your home. They usually include palliative care nurses. Sometimes the team includes a doctor who may share your care with your GP. Homecare teams are usually based at a hospital or hospice.

Other professionals

  • Occupational therapists working in the community can help you keep your independence at home. They can assess your situation. Then they may be able to arrange for aids to be delivered, such as toilet frames, handrails or a wheelchair. They can also arrange for changes to be made to your home. This might include fixing safety rails in your bathroom or making doors wider. If you have difficulty dressing, they may suggest and arrange to have your clothes altered. Many occupational therapists may also be able to change daily routines and activities to help you manage low moods. Some occupational therapists can also help you manage anxiety, fatigue and breathlessness.
  • Physiotherapists can help keep you moving. They also offer treatment, massage and exercise programmes to help relieve pain. Your GP or community nurse can arrange physiotherapy for you.

Social services

Your hospital team, GP or district nurse can refer you to social services. Or you can refer yourself.

You are usually offered an assessment of your needs. A social worker, or sometimes an occupational therapist or nurse, will ask you about your daily routine and what you find difficult. They use this information to work out what your needs are and what support can be provided.

You usually have to pay towards the cost of services. This depends on your financial situation. But you may be entitled to extra benefits to help you get care.

Each local authority has its own assessment procedure. You can find your local authority by visiting gov.uk/find-local-council 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. The website socialcareinfo.net can also direct you to your local authority website and other sources of local support.

Care attendants or carers can come into your home to help with jobs such as cleaning and cooking. They can also help with some personal tasks, such as washing and dressing. Some care attendant schemes provide someone to be there at night.

There also may be local organisations or charities that offer homecare, gardening, companionship or sitting services. Your GP or hospice staff usually have contact details of any in your area.

This type of help can also be arranged through private agencies, which must be registered with the Care Quality Commission. The UK Homecare Association can give you details of homecare providers that follow its code of practice – call 020 8661 8188 for more information. Your local adult social services department should be able to give you details of approved private agencies. You can also ask friends or relatives for recommendations.

Charities such as Age UK and Carers Trust can also provide home help and extra help around the house.

Other sources of help at home

  • British Red Cross has volunteers that can help you with shopping and errands, like posting letters and changing library books. It can also lend equipment, such as wheelchairs and commodes, and provides a service to take people to hospital.
  • Some areas have volunteer schemes that can arrange for someone to visit you at home. This can provide company for you and give your carer a break. You could check notice boards in your GP surgery or your local library, community centre or church.
  • NHS continuing healthcare may fund and provide for all your care needs at home. This is for people who need a lot of healthcare or are in the last few weeks of life.


Hospice care and care homes

If you have worrying symptoms, you may need extra support. Your doctor or nurse may refer you to a hospice or palliative care (symptom control) unit in a hospital.

Hospices

Hospices specialise in caring for people who have a life-limiting illness. They have a team of doctors, specialist palliative care nurses and other professionals. They are all experts in controlling symptoms and providing emotional support.

You can go into a hospice for different reasons. You may need to go into a hospice for a short time to help control your symptoms. Or you may go in for respite care to give your carer a break. Palliative care nurses may arrange this for you. They will visit you at home again once you are discharged. You may decide that you would like to die in a hospice. You will need to discuss your wishes with your GP and the hospice team involved with your care.

Hospices are very different to hospitals. They are quieter and aim to provide care to suit each person’s situation. Visiting is usually much less restricted than in a hospital. They offer a wide range of services for patients and their families. These include:

Accommodation and care in a hospice is always free of charge. There are a limited number of beds in each hospice, so there may be a waiting list. But urgent admissions can usually be arranged within a couple of days.

Some hospices have day centres. People who are living at home can visit the day centre for a day or more each week. They can get care from the specialist team and peer support from people living with similar illnesses.

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 located across the UK. If you are not sure about the idea of hospice care, you can ask to visit before you decide. The staff will be able to show you around and answer any questions or concerns you have.

Care homes

You or your family may think you might benefit by staying in a care home. These usually offer short-stay or long-stay care. A residential care home provides living accommodation, meals and help with personal care. If you need nursing care, some registered care homes can provide this. These are often referred to as nursing homes. Your GP, district nurse or social worker can arrange for you to stay in a care home, either with or without nursing care.

When you have advanced cancer, it is important to think about the care you might need in the future. You may not have any nursing needs now. But you may need nursing care as your illness progresses. Thinking ahead can help you avoid having to move from a residential home into somewhere that offers nursing care if you need this.

A private care home charges for care. But if you have little or no savings, you can sometimes get help in paying this. It can sometimes take a while to organise care in a care home. There are not always places available.

NHS.UK has information about care homes and funding for care. You can get lists of local registered care homes (including ones with nursing) and their details from:

  • your local social services department
  • your area health authority.

You can also search for a care home by visiting carehome.co.uk


Help with pets

Many people are concerned about what will happen to their pet if they are going to be away from home. This includes going into hospital. Some organisations can offer services such as dog walking. If you need to be away from home for a while, some organisations may be able to foster your pet.

We have more information about getting help with pet care when you are unwell.


Things I need help with

You might want to think about writing down anything you need help with and where you can get support. We have a table you might want to use.

Back to Coping with advanced cancer

Decisions about treatment

You may have lots of questions about your treatment options. You can talk to your doctors and nurses about these.

What is CPR?

Cardiopulmonary resuscitation (CPR) can be used to try to restart the heart and breathing if they have stopped.

Making CPR decisions

You may be asked to make a decision with your family and healthcare team about whether you want cardiopulmonary resuscitation (CPR) to be attempted.