As someone with a life-limiting condition, I:
- need clear information about my options so that I can be really involved in planning my care.
- expect to feel listened to and understood so that I get the right care at the right time.
- need to know that my care is in good hands so that I don’t have an extra thing to worry about.
- expect to be asked what level of medical information and detail I want shared with me so that I can decide who else might need to hear it too.
- need my care to feel flexible so that it can change with how my needs and feelings change.
- need to know when different carers are visiting so that I can plan for the rest of my day and not feel like my day is on hold.
- want information about me to be stored somewhere easily so that I don't have to keep repeating myself to different people.
- need to have clear daily tasks so that I know which medication to take when.
- expect to see the same GP that I've had for years so that I can trust that all the people treating me know what is best for me.
- need to know that all the different medical information about me is being passed between the right people.
- need to know when something is considered necessary or important enough so that I feel comfortable to ask for help.
- need to be reminded to update my wishes because how I feel and what I want changes at different times.
- need to be able to prioritise what I do each day so that I can manage my energy.
- want to be asked what is important to me because it helps me to focus on ways to stay well.
- expect to feel fear about different parts of my life and I need these to be acknowledged in my care.
- need to record a lot of information quite often because it is important in terms of my care or my prognosis.
- need to know that the information being kept about me and my condition is accurate.
- need to work hard to stay positive and give myself reasons to get through the day.
- need to keep on top of a lot of different things because I have appointments, medication and care visits.
- need to know that there is always someone there that I can speak to because I can panic and that makes things worse.
- need support to record information or keep track of my feelings.
- expect to receive the right treatment for my condition and a certain level of care.
- need other ways to communicate when I can't talk or write.
- want to know what's coming up next in terms of appointments, visits or treatments.
- need to do things or be around people that boost my sense of self-worth.
- need to motivate myself to meet goals and complete tasks as a way to keep going.
- want to be asked what level of involvement I want in decision making about my care.
- want to be able to add and amend information about my personal preferences.
- need to know that the people I've chosen to be part of my care are formally recognised by the clinicians.
- want information about the services and care that is realistically available to me along with guidance on how to access it and details of any costs involved.
- need to maintain as many routine activities as I can manage for as long as possible because it gives me a sense of normality.
- want my own expertise about my condition to be heard and valued by the professionals.
- need to plan ahead because it gives me peace of mind now.
- want to be asked about my hopes and goals because what I need goes beyond just a medical plan.
- want to be given realistic and honest information about my prognosis and for it to be a continous conversation.
- need to check my understanding of the information I've been given because it's sometimes not clear or I haven't heard it properly.
- want to have consistency and familiarity in the people that I see and who are treating me or caring for me.
- need to feel that people have the time for me, to listen to me, because I feel like a burden otherwise.
- need to know that the person who is caring for me, or treating me, really knows me.
- need to trust my GP and the nurses who come and visit because I listen a lot to what they say.
- need to feel reassured that I am not a nuisance because it affects how I access services that I might really need.
- want to know sometimes that I am a priority or warrant a degree of urgency.
Carer or family member
As a carer, I:
- want to receive information and communicate with the clinicians at a time that is good for me.
As someone who is treating a person with a life-limiting condition, I:
- need to have access to information about them quickly and easily.
- need to know who else is in the care team and what their background is and relation to the patient.
- need to be able to trust someone else’s assessment and know what they based their assessment on.
- need to have the most current information as possible about that person.
- need to be able to verify the source of any preference that I am asked to act upon.
- need to understand how the person is through my own lens of interpretation.
- need to know who else is treating that person so that I don’t duplicate resources.
- want to give them a way to make preferences but I need ways to manage expectations, as preferences require availablility of resources.
- need ways to balance time between immediate needs and future needs.
- need to be able to plan ahead so I can avoid crises. Care shouldn't be reactive.
- it helps to have information in advance about the person.
- want to give them a way to make preferences but I need to know they understand what their choices mean.
- As a physiotherapist going into people’s homes, I need to have my own record of events, that I have documented and own so that my back is covered in the event of any complaint or incident.
- As an out-of-hours GP, who also visits people in their homes, I need any records system I use to be mobile.
- As a nurse, I need to know what different tools can do so that I can choose the right tool for the right time and context.
- As a clinician working in a palliative care team, I need there to be stronger links between communiity services and acute care services so I can better coordinate my resources.
- As a nurse and care home manager who does Advanced Care Planning with residents, I need to constantly balance the duty of providing the information a person wants or needs to ensure they can provide adequately informed consent with overburdening a person with too much information.