Know About Me
When you haven't long left, you don't want to keep repeating yourself.
If you are unwell, or caring for someone who is, then telling medical staff your medical history, and letting them know what your views are about your care and what you want to happen and not to happen, shouldn't be a source of stress. And you shouldn’t have to keep repeating it unless absolutely necessary. It's a pain for you at a time when you have other things on your mind. And there's a risk you might miss something important the 20th time you tell it.
There is a better way. Recording your end of life care records and wishes electronically makes it easier for you, and simpler for those caring for you. The right information about you is available easily to the right people, reducing the time you have to spend repeating it. And it allows you to address the future, as well as the past, setting down your wishes for your end of life care.
This allows you to make your choices, and for those to be shared across the places and people you might see for care. It makes it easier for you to personalise your care, and cuts the chances of something important not being shared with the right people at the right time. It makes it easier for you to get what you want, where you want it.
So - welcome to #KnowAboutMe. This is a campaign by Dying Matters and the National Council for Palliative Care, commissioned by NHS England. Dying Matters encourages everyone to think about their end of life care wishes, such as what treatments you wouldn't want to receive, and where you'd like to be when you die. We all need to think about this, and talk about it with those close to us. Sharing that information electronically makes it easier for our wishes to be known and shared, and thus more likely we'll get what we want.
We'll be adding more information to this page over the course of the campaign, so do check it again later.
Join in on Twitter by following the hashtag #KnowAboutMe. Please tell other people about this as well, and ask them to visit this webpage.
We all know how frustrating it can be to have to repeat information about yourself when you're ill. It's even worse when you're nearing the end of your life and every moment is precious. Sharing information from your medical records online makes it easier for the key information to be shared among the professionals who are looking after you. It means they will know about you and what your priorities are your for care. It's easier for you, and easier for the people caring for you.
There's a bit of a mix, as different areas use different names. For example, in London, it's called Coordinate My Care. The key question is: what's the best way to share my end of life care information electronically?
Different areas are launching systems at different times, so it's possible there isn't one in your area yet. There is a commitment for everywhere in England to have one by 2020, and most have now launched.
Don't worry! Alongside any area-specific system there is also the Summary Care Record. Almost everybody has a Summary Care Record - SCR - that is created automatically out of information held by your GP. The only exceptions are where people have opted out. This contains information about current medications, and any history of allergies or previous bad reactions to medicine. But you can always ask your GP to store additional information about you in your SCR, such as details of long-term conditions, key points from your medical history or any specific needs. You can also ask that your SCR is used to sort your wishes for future care. You can find out more about summary care records here.
Summary Care Records work alongside other electronic records systems - anything you share with your GP can also be added to you SCR if you ask for it. Add this to your electronic end of lfie care record and you've got it covered.
Before you talk to your GP or practice nurse, you need to talk about your care wishes with those close to you. This could include discussing any things you wouldn't want. For example, some people request that there should be no attempt at CPR if their heart stops. It's important to remember that you can always change your mind about any of these as long as you are able to decide for yourself. But it's important to have these discussions so that you know what you want to ask to be recorded electronically.
When you do sit down with your GP or practice nurse, start by asking what’s available locally to enable your records to be shared electronically. They should be able to tell you if there is a local scheme in place, and what it's called. You can also ask your GP about recording additional information in your SCR. This isn't limited to medical issues or wishes - you can also make sure personal information such as religion, who to contact in an emergency and where you'd like to be cared for before death is in there.
To help you think in advance to make the most of your clinical consultations, you may find this short film by Dying Matters and NHS England useful
Remember: this is about you. It's information about you, shared with people who will care for you, and it's to help you get the end of life care you need with the minimum of fuss. There will be times when you have to repeat information, but everyone wants to keep this to a minimum.