It is a good idea to make sure your GP understands what you need in the way of nursing and also that you want to live at home for as long as possible. GPs should be able to tell you what is available in your area and what help you can expect to receive through your local primary care team.

GPs should put you in touch with a district nurse, but you can always contact the district nursing service yourself and ask for help (your local GP practice will have the name and phone number of your district nurse). District nurses and GPs should also know whether Macmillan and Marie Curie nurses are available in your area.

If you need other kinds of help apart from nursing, you should contact Social Services yourself and ask for a Community Care Assessment/ Care and support needs assessment. A health or social care professional will visit you at home and discuss your needs with you so that an individual Care Plan can be made for you. (This plan is a written statement of your needs and you should ask for your own copy of it.)

After meeting you, the social worker may decide to talk to members of your primary care team to check on what kind of nursing help has been provided for you so that they can supplement that care with home help. Try to be as clear as you can about your needs for help with personal services, such as bathing and showering, and how many times you would expect to receive this kind of help.

You can also contact voluntary organisations like the Carers Trust or the Bristish Red Cross yourself to find out if there are local volunteers in your area who may be prepared to visit you, take you out for a couple of hours or help you with shopping and other household chores. Local churches may also offer help.

What are District or community nurses?

When someone is ill and living at home their medical care is the responsibility of their primary care team which includes general practitioners, practice nurses, district nurses and health visitors.

District Nurses work collaboratively with other health care professionals, social services, statutory, voluntary and private agencies in the assessment of needs and the provision of care. They liase and can refer to other agencies as appropriate. As well as a ‘core’ daytime service, district nurses provide an ‘out-of-Hours’ service which includes evening and night nursing care.

There are many specialist nurses within the District Nursing Service who offer expertise in wound management, palliative care and rehabilitation. Anyone who has just come home from hospital and is trying to cope with illness at home is entitled to see a district nurse and can contact them directly by phoning their own medical practice.

What is a ‘District Nurse Assessment’?

If someone has a terminal illness, a district nurse may carry out a formal assessment of the person’s nursing and related needs in consultation with them and their family. This results in a district nurse assessment which establishes how much support the nurse and the family feel is needed if they are to continue to care for someone with a terminal illness at home.

The assessment should include details about how the kind of help that should be provided, by whom and at what times of day/night. District nurses may decide when and if Marie Curie nursing or care is appropriate and also whether the family would benefit from Community Palliative Care nurses including Macmillan nurses.

A district nurse will review how each person is being cared for at various intervals and will decide whether more or less care and help is required. A district nurse can also arrange with social services to have special equipment supplied such as wheelchairs, handrails, bath aids etc.

What are Marie Curie nurses?

The Marie Curie Nursing Service complements the District Nursing Service by offering one-to-one specialised nursing that may be needed when someone has a terminal illness. Marie Curie nurses work in most parts of the country and can provide 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.

What are Macmillan nurses?

Macmillan nurses specialise in managing pain and symptom control and also provide emotional support to people and their families. They do not usually provide daily nursing care but can visit you regularly to check on your symptoms and give advice. In some cases they can help you or your carer to administer your medication. The Macmillan nursing service is free and you can contact them through your GP or through their website.

Hospice at home

Hospice at home services offer nursing and supportive care to patients with life limiting illness in their own home, patients are usually referred to a hospice at home service by a GP hospital professional or community nurse but anyone can contact a service to enquire about care. Hospice at home services vary across the UK. For more information see National Association for Hospice at Home (NAHH).