You may need extra help if you are being looked after at home. It is not always easy to ask for help, as you might feel you should be able to cope. But caring can be hard work for the people looking after you, both physically and emotionally. There are many health and social care professionals who can help you.
Your district nurse, specialist nurse or GP can tell you how to get help from health and social care professionals and voluntary organisations. They can also tell you about any specific help and support available in your area.
When you are being looked after at home, your GP has overall responsibility for your care. Your GP is responsible for prescribing any drugs you need. They will also arrange for you to go into hospital or a hospice if needed. They can help with the following things:
- If you are worried about any changes in your symptoms, your GP can arrange to see you. This could be in the surgery or at home. They will discuss what treatments might help control any symptoms you may have.
- They can also refer you to the palliative care team if your symptoms are more troublesome.
- You can talk to them about what may happen as you become less well. They can help if you want to make plans for the future, so you get the care you want. This could include planning for emergencies, and making a statement of your wishes, an advance decision to refuse treatment (if you live in England or Wales) or an advanced directive (if you live in Scotland).
- If you need nursing care, your GP can arrange for a district nurse to visit you. They will help to organise nursing care for you at home.
District nurses work closely with GPs. They will visit you at home and assess your nursing needs. They can help with the following things:
- Coordinating your care. They can contact other health or social care professionals to help with your care, if needed.
- Monitoring and treating any symptoms you may have.
- Giving injections, changing dressings, giving advice and support on pressure area care and toilet problems, such as incontinence and constipation. They may organise equipment to help with pressure care or continence, such as a special mattress or a commode.
- Showing your family or carers how to move you and take care of your personal needs.
District nurses often work with palliative care nurses to help support you and your carers so you can stay at home. They may be able to arrange for a social carer or a healthcare assistant to help you with things such as washing and personal care.
Marie Curie Nurses
Marie Curie nurses are available in some parts of the UK. You can get one-to-one, overnight care from a registered nurse or senior healthcare assistant in your home. The shifts are usually for eight or nine hours. In some parts of the UK, they also offer shorter shifts, evening shifts and day shifts. How much care they can provide may differ. They cannot usually offer complete, 24-hour care. The services of Marie Curie nurses are free. They are usually arranged through the district nurse, who will talk to you and your carers to decide what hours of care you need.
Social workers or care managers
If you need help with personal care, such as washing and dressing, a social worker or care manager can arrange a care package for you. They may also be able to arrange extra help with housework, shopping and cooking.
Your doctor or district nurse can refer you to social services. Or you can refer yourself. You are usually offered an assessment of your needs. You usually have to pay towards the cost of services, depending on your financial situation. But you may be able to get extra benefits to help you get care.
Social workers or care managers can tell you about any benefits you may be able to claim. They may also be able to provide more counselling and emotional support for you and your carers.
Physiotherapists can help keep you moving. They also offer treatment, massage and exercise programmes to help relieve pain. Your GP or community nurse can refer you to a physiotherapist.
Occupational therapists can help you keep your independence at home. After an assessment, they may be able to arrange for aids to be delivered to help your day-to-day living. These might include toilet frames, handrails or a wheelchair. They can also arrange for changes to be made to your home, such as fixing safety rails in bathrooms or making doors wider. If you have difficulty getting dressed, they may be able to suggest and arrange to have your clothes altered. Many occupational therapists can help you manage low moods, by changing daily routines and activities. Some therapists can also help with managing anxiety.
Voluntary organisations and charities
Voluntary organisations and charities offer different kinds of help, including information, loans of equipment, grants and transport.
Some organisations have volunteers who can provide short periods of respite care. This gives your carer a break during the day time. Others, including Marie Curie, provide befriending services for people who are on their own. They can introduce you to a trained volunteer who may be able to give one-to-one help and support.
Wherever you are being cared for, you can get help and support from a palliative care team.
Hospital or community specialist palliative care teams
Specialist palliative care teams provide care for people who are close to the end of their life. They can also provide support for the person’s family and friends. Some people are referred to a palliative care team early on in their illness, for example if they have troublesome symptoms. The palliative care team may be involved in the person’s care for some months.
Your cancer doctor, specialist nurse or GP can refer you to a palliative care team if you need specialist support or care. Hospital palliative care teams are usually based in a hospital. They can visit you if you are in hospital or attending a clinic appointment. Community palliative care teams are based in the community. They are often linked to a hospice and can visit you at home or in a care home.
What do palliative care teams do?
Palliative care teams might include or work closely with:
- specialist palliative care nurses
- specialist palliative care doctors
- a social worker
- a counsellor
- an occupational therapist
- a physiotherapist
- a spiritual care coordinator or chaplain.
Palliative care teams can give you advice on pain control, coping with other symptoms, emotional support and practical problems. They can also support you to make an advance care plan and help to coordinate your care.
Palliative care nurses are experienced in assessing and treating any symptoms you may have. They can also provide counselling and emotional support for you and your carers. Palliative care nurses are sometimes called Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may see them when you are at a clinic or in hospital.
Specialist palliative care doctors can give expert medical advice on the management of symptoms. They work closely with palliative care nurses and may visit people at home, if needed.
Some community palliative care teams have nurses or healthcare assistants who can visit you at home and provide practical care. This might include washing you, dressing you and giving you drugs. A palliative care nurse can tell you more about the care provided by their team.