Seeing people as individuals, not as conditions
Our About Me campaign aims to improve how care is delivered so it’s truly about the person, not just their condition.
Everyone living with any condition should be treated as an individual by the people who give them care and support. This is particularly true for people diagnosed with a terminal illness.
Through our About Me campaign, launched in July 2014, we are working to improve how care is delivered so it’s truly about the person, not just their condition.
Why are we doing this?
We are concerned that people with a terminal illness and their families are not getting care in a way that puts them and their needs first. This includes:
- people feeling health and social care professionals are focusing on their condition, rather than them as a person
- people feeling they do not have a say in the care they receive and cannot express what they want
- professionals only focusing on the medical side of diagnosis and treatment, rather than the emotional impact or what other support the person might need
- professionals using complex terms, making it difficult for people to understand what is happening
- professionals wrongly assuming someone has already discussed details of someone’s diagnosis or treatment with them
Any of these can make life much more difficult for people with a terminal illness and their families, at what is already a challenging time.
Recently Andrew McDonald, formerly CEO of the Independent Parliamentary Standards Authority, raised this issue publically and helped us to start this campaign. Andrew delivered a lecture exploring his experiences of living with an incurable condition.
What is Marie Curie doing about this?
We want everyone living with a terminal illness to receive care that is truly about them. To help make that a reality, we want to hear from people with experience of terminal illness about their experiences of care. Some of the ways we think health and social care professionals can help address this issue are:
- Always ask the person how they want to be addressed and always use their preferred approach
- Do not talk in unnecessary jargon
- Establish what levels of support the individual has available and what else they might feel they need
- Remember that while you may have handled difficult conversations many times, this will probably be their first time – consider how you would want a colleague to have such a conversation with a member of your family
- Take time to explain the options available to them and what they might mean for them as an individual and/or family
- Keep checking that the person and their family understand what they are being told.
How can you help?
We would like you to tell us from your experience how care can be more about the person and their needs, not just the condition. Whether you had a positive experience, or a negative one, let us know your thoughts. You can contact us through Facebook or Twitter with the hashtag #AboutMe, or email Caroline Weston, Policy and Public Affairs Manager at email@example.com.
If you represent an organisation and you would like to join the campaign, then please let us know. If you already support people in this way, we want to hear from you.
What will happen next?
Your experiences will help us work with professionals, organisations and institutions to make sure they support people with a terminal illness in a way that considers them as a person, with their own concerns, thoughts and needs.
If you have any questions about this campaign, please email Caroline Weston, Policy and Public Affairs Manager at firstname.lastname@example.org or call her on 020 7091 6640.
For all media enquiries, please contact Amy Lucas at email@example.com.