Who might be involved?

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There may be a number of people who become involved in the person you care for’s end of life care and the provision of support to you as their carer. The person you care for may receive support from some or all of the following people, and you and the person you care for can ask questions to any of them:

If the person you care for is at home then the primary health care team at their local surgery or health centre will be responsible for their treatment. This will usually include their General Practitioner (GP), practice nurses, district nurses, and health visitors. GPs can refer to specialist doctors such as oncologists, haematologists, and geriatricians, as well as palliative care specialists. The person you care for’s GP will be responsible for their medication and care at home and can tell you and the person you care for about your local hospice and arrange a visit.
The district nurse will arrange and coordinate any care needed at home. This could include a specialist Marie Curie or Macmillan nurse, home care workers organised via social care teams/services and social care workers, or sitters provided by a local charity. Macmillan or chemotherapy nurses do not provide routine nursing tasks but can help with pain and symptom control for the person you care for. They will need to be referred by their GP, a hospital consultant, a district nurse, or a ward sister.
A social care teams/services and social care workers will come to you to carry out a needs assessment for social care ie. non-medical support, as well as carrying out a carer’s assessment of your own needs as the carer.
When a terminal illness has been diagnosed a specialist palliative care team will assess the needs of the person you care for and your own needs as a carer. This team will provide the best possible care for both of you and can be helpful in planning ahead for end of life together.
A counsellor is trained to help people in all types of situations, including end of life. They will be able to help you and the person you care for to understand and express their feelings and cope better with the situation.
A chaplain is a cleric (minister, priest, pastor, rabbi, or imam) or a lay representative of religious tradition attached to a hospital or hospice. Their role is to offer spiritual support to you and the person you care for. A chaplain will listen to how you feel about end of life care without judgement and offer support which is right for you as an individual. They will be aware of the importance of diversity and people’s different views and beliefs.
An occupational therapist (OT) will assess the skills and abilities of the person you care for in relation to day to day living tasks such as walking, personal care, cooking, eating and so on. They provide practical support to enable the person to have as good a quality of life as possible as they approach end of life by providing equipment or adaptations that enable them to be as independent as possible. They can also provide you, as their carer, with training, guidance, and advice on how to keep yourself safe, for example when moving and handling.
A physiotherapist can help the person you care for and you, as their carer, in relation to maintaining mobility for as long as possible. Even in the final stages of illness, physiotherapy has been proven to relieve pain and improve mobility, enabling people to adjust and adapt to the consequences of their illness. They can assist in improving a patient’s quality of life by maximising their functional independence and helping to provide relief from distressing symptoms such as breathlessness and fatigue.
A nutritionist or dietician is not just an expert source of nutrition knowledge but also has the skills to support you and the person you care for through some very difficult social and emotional issues that are often associated with eating and terminal illness. Good eating is not just about eating well but also about socialising over a meal and bringing normality to everyday life. You, as a carer, may spend a lot of time preparing appetising meals for the person you care for to find they only eat a few mouthfuls or they do not want to eat at all. A dietician will work with you to allay your anxieties about how to keep the person ‘strong’.

For more general information about what is end of life and who is involved see NHS what end of life care involves.