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Information for patients and carers
This page is written for people with a life-limiting illness, and the people who look after them. It explains what CARE-PAC is, what we are asking, and what to expect.
CARE-PAC is a website and support service for people with a life-limiting illness, and for the people who look after them. We are building it as part of a research project. We want to find out if it helps with symptoms, with talking to your care team, and with feeling supported. Taking part is your choice. You can stop at any time.
“It’s good in as much as things can be flagged up almost immediately… my pain and shortness of breath has been flagged up, my palliative care nurse got notified and I’m getting treated for that better now than before.”Patient 1
“It forces me to stop and think about the situation and how I’m feeling which is a good thing, rather than ploughing through every day and not taking a step back and breathing a bit.” Carer 8
Looking after someone who is unwell can be tiring and lonely. CARE-PAC is for you too. The same tool helps you ask for support and tell the team what you need.
Who is this for?
CARE-PAC is for people who are living with a life-limiting illness that is not expected to get better. This includes terminal, physical, or neurological illnesses, and those nearing the end of their lives for other reasons.
It is also for the people who care for them at home: partners, family members, friends, and other informal carers. Carers are part of the project from the start.
Macmillan, Marie Curie, and Hospice UK all offer free help and information for people with a life-limiting illness, and for those caring for them.
Marie Curie support line
- Phone: 0800 090 2309
- Email: support@mariecurie.org.uk
- Online: mariecurie.org.uk/services/support-line
Local Glasgow hospice
- Phone: 0141 557 7400
- Email: glasgow.hospice@mariecurie.org.uk
- Online: mariecurie.org.uk/services/hospices/glasgow
What is the study?
We are making a website that helps you tell your care team how you are feeling. It lets the team see when something is getting worse, so they can help sooner. It also gives you and your carer information and support, in a place that is easy to find.
The website is being built with patients, carers, and clinicians together. Once it is ready, we will run a study to see if it works as we hope. Around 200 people will take part across different parts of the UK.
What does taking part involve?
If you choose to take part, you might be asked to:
- tell us how you are feeling in regular check-ins, using a phone, a touchscreen tablet such as an iPad, or a computer
- let your care team see your answers
- answer some longer questions a few times during the study
- share your views on what is helpful and what is not
We will explain everything before you decide. You will get a written information sheet. You can ask as many questions as you like. You will only take part if you say yes.
In plain English
What taking part looks like
Three simple steps. Nothing complicated, and always at your pace.
A quick check-in
Once a week, tell us how you are feeling: on a phone, a touchscreen tablet such as an iPad, or a computer. It takes a few minutes.
Your team sees it
Your care team can see when something is getting worse, so they can step in sooner.
Support that fits you
You and your carer get information and help in one easy-to-find place, whenever you need it.
“I know if I put what’s happened today in the app, it’ll be read, and somebody will get back to me about it.”Patient 3
What if I change my mind?
You can stop at any time. You do not need to give a reason. Your care will not change because of your decision. This is true at every point in the study.
Will my information be kept private?
Yes. We follow strict UK rules to keep your information safe. Only the people who need to see your information will be able to. When we share what we learn from the study, we never share anything that could identify you.
What are the possible drawbacks to participating?
Taking part will ask for some of your time, and you may prefer further support navigating the technology in this study from a carer. Some people find that the questions or visits can feel tiring. A few questions may touch on things that are personal or hard to talk about. You can take a break, skip anything you would rather not answer, or stop at any time. We will always explain what is involved before you decide, so there are no surprises.
How do I find out more?
We are still in the early part of the study. The full information for people who can take part is being written now, with help from our patient and carer panel. If you would like to be told when it is ready, you can email us at care-pac-project@strath.ac.uk.
If you have any more questions, please refer to the Common questions tab.
Want to be involved?
Whether you are a clinician interested in trial sites, a researcher exploring collaboration, or a patient or carer who would like a voice in shaping the system, we would love to hear from you.
Contact the team