Things you need to know when you're diagnosed

If you’re living with a terminal illness, the right care can make a big difference to the way you feel. It can also help you get the most from the time you have left.

We spoke to people who are living with a terminal illness, or are at a later stage in their illness, and asked them to tell us more about their experiences. Based on their feedback and input from clinical experts, we’ve produced Exploring your care options, a guide that explains where to find the help you need, and how to get care that meets your needs and wishes. This post is a shorter summary of the full guide.

What is palliative care? 

Palliative care is for people living with a terminal illness where a cure is no longer possible. It’s also for people who have a complex illness and need help to control their symptoms. 

Who provides palliative care?

Your GP will lead your care, but you may also come into contact with:

  • doctors
  • nurses
  • counsellors
  • physiotherapists
  • occupational therapists
  • dietitians
  • social workers 

How to get palliative care 

To find out what palliative care services are available in your area, talk to your GP or district nurse. They can discuss your needs and wishes, explain who can help, and make referrals.

If you’re having treatment in hospital, you can also ask to see someone from the hospital’s palliative care team. Your doctor or nurse should be able to arrange this.

You can also contact the Marie Curie Support Line on 0800 090 2309*. We can tell you what services available in your area. 

Read more in our Exploring your care options guide

Knowing your rights 

Everyone with a terminal illness has the right to high quality palliative care and to be able to live as well as they can until they die. Unfortunately, this doesn’t always happen automatically. 

If you’re not getting the care you need or want, it’s OK to ask for it. If you don’t feel able to do this on your own, you can ask a trusted health professional or social worker to help you get the right care. 

What you can expect 

You have a right to expect care that is:

  • kind and compassionate
  • person-centred
  • based on honest and timely communication
  • agreed with you in a clear care plan
  • appropriate to your needs and wishes
  • designed to help you stay as independent as possible
  • provided in the place of your choice
  • safe and of a high quality, controlling any pain and symptoms
  • accessible when you need it, night or day
  • holistic, which means caring for your physical, emotional, practical, social, and spiritual needs

Read more in our Exploring your care options guide 

Who can help 

There are many people who can help you and the people caring for you. 

  • Your GP and primary care team - When you’re ill and living at home, your medical care is the responsibility of your GP and their team.
  • District nurse - A district nurse (sometimes called a community nurse) organises the different people who help with home care.
  • Social worker - If you have a social worker, they are likely to be part of your local social services department. You may also get support from hospital and hospice social workers.
  • Specialist palliative care team - A specialist palliative care team provides medical, nursing and psychological care for people who are affected by serious or terminal illnesses.

You can read more about your care options in our Exploring your care options guide

Marie Curie can also offer support with our Marie Curie Support Line, 0800 090 2309*, open 8am to 6pm Monday to Friday and 11am to 5pm Saturday, and our Marie Curie Community.

*Your call may be recorded for training and monitoring purposes.