Better information sharing will benefit terminally ill people

By Caroline Weston Policy and Public Affairs Manager Caroline Weston, Policy and Public Affairs Manager



On Friday the Department of Health announced new steps to improve information sharing to ensure people receive more coordinated care.
We welcome this announcement, as we believe it will benefit people living with a terminal illness and their families.  When people are at the end of life, they are likely to have a wide range of professionals involved as part of their care from health and social care.


Frustrating experiences


We have heard from terminally ill people and their families that they feel professionals ‘aren’t talking to each other’ about their care and that they often have to keep explaining their situations to every professional who is involved each time they see them. This can be very frustrating for people and their families at what is already a very difficult time. We also know that when care is better coordinated, they feel more assured that everyone supporting them has all the information necessary to provide the appropriate care at the right time. Brian Andrews, a member of our Expert Voices Group, and Chair of the Lay Representatives Board of the Pan-London End of Life Care Alliance, said: “Nothing prepares you for living with and caring for someone with a terminal illness. It can be a confusing, highly stressful and emotionally vulnerable time, particularly when support and services are poor. Equally, it can be a hugely comforting experience when the right support and services are in place and well co-ordinated. “Different agencies, although keen to help, must understand that lack of coordinated care and lack of information sharing between professionals, their patients and carers, can have a detrimental impact on our experiences at the time and long after. Only having to explain ourselves once and the ability for everyone to have access to the most up to date and accurate information could have an incredibly positive impact on improving our experience of end of life care.”


Government proposals


The first step the government has announced will be to have one consistent identifier for people as they go through both the health and social care systems. This is to ensure that it will be possible for any health or social care professional to access an individual’s full record at any point. The idea is to use an individual’s NHS number as the identifier. The second step is to provide guidance to health and social care professionals on how they can share information with other professionals about an individual’s care. This provides official support for the Health and Social Care (Safety and Quality) Bill, a Private Member’s Bill which was debated in the House of Commons on Friday.  One of the Bill’s aims is to improve safety in the NHS in England by improving the way individuals’ information is held and shared. The announcement today demonstrates that the Government supports the Bill and it will almost certainly become law.


Integrated health and social care


This is part of the Government’s work to bring the health and social care systems in England closer together so that they are more integrated. As this is an issue supported by all the main parties, it is likely that whatever the result of next year’s General Election, this work will continue. The Scottish Government has already passed an Act which will make NHS boards and local authorities jointly accountable for achieving certain results in health and social care. We hope that these measures will achieve their aims and that as a result terminally ill people will receive more joined-up care. They should no longer have to focus on worrying about whether the professionals supporting them have all of the necessary information to provide the right care.