Improving the collection, analysis and reporting of mortality data
Working with service users, carers and bereaved families to make significant improvements on how we collect, analyse and report mortality data
Norfolk and Suffolk NHS Foundation Trust (NSFT) has a comprehensive improvement plan as part of our new vision and strategy to improve outcomes and experiences for our service users, families, carers and our staff. Our vision and strategy make it clear how all our work focuses on long term, sustained improvement to create a safer, kinder and better organisation.
One of our core transformation and improvement programmes within our strategy is focussed on learning from deaths, which is split into three clear areas of focus:
- Collecting, analysing and reporting on deaths ; involving the creation of a new electronic system for mortality information collection, analysis and reporting.
- Ensure learning through improvements to clinical practice ; reviewing all Prevention of Future Deaths reports from 2013 to identify themes and ensure learning and improvement, including themes from the Forever Gone Report, Domestic Homicide Reviews and Serious Case Reviews.
- Work with service users, carers and bereaved families ; detailed work with service users, families carers and bereaved families who sit on our Learning from Deaths Action Plan Management Group.
Working closely with service users, carers, and bereaved families, NSFT, supported by NHS Norfolk and Waveney ICB, NHS Suffolk and North East Essex and NHS England have developed a new way of reporting on the number of deaths for people who were receiving care from our Trust or died within six months of discharge from our services.
Following publication of the Grant Thornton Independent Review of mortality data in June 2023, a more accurate, mainly automated system has been developed and implemented, ensuring robust recording, management and timely reporting of data from 1 November 2023. This enables us as a Trust to consistently record, analyse and report on the number of people that have sadly passed away.
As an organisation, we will publish this data on a bi-monthly basis and discuss at every board meeting. Our first report using the new database includes the number of deaths from implementation on 1 November 2023 to 31 January 2024 and most importantly, this information will be used to inform our improvement and transformation work.
The report groups the number of deaths for each reporting period into five groups:
- Expected natural – This is a death which has a clear natural cause. Examples may include a death linked to a neurological disease, such as Parkinson’s or dementia, frailty or old age, cancer and organ failure.
- Unexpected natural – Deaths in this category are when a loved one passes away unexpectedly but from natural causes. This could be as a result of contracting an infection or respiratory illness or infectious diseases. It can also include illness such as cancer.
- Unexpected unnatural – If the death of a loved one is placed into this category, the cause is linked to reasons where the individual may have decided to take their own life and their death was intentional. Examples include hanging, drug toxicity, drowning, a fall and injuries from an external cause.
- Unable to obtain cause of death – In an unfortunate number or small cases, it is very difficult from the information available or shared with us to determine the actual cause of death, even after in depth screening is done. We will always try to identify a cause of death to categorise the deaths so we can learn from any deaths to help improve the outcomes and experiences for our service users, families and carers.
- Awaiting cause of death – in some cases, we still await the cause of death from our official source of information at the point of publication of our reports. Where this is the case, we will include the cause in future reports.
Most people who have used our services pass away from natural causes, such as a heart attack, stroke, and old age as opposed to suicide, and alcohol and/or drug addiction.
This information is gathered from the NHS Spine and Personal Demographics Service, which allow data to be shared securely across national services. We are also often reliant on other NHS providers for cause of death information to enable us to meaningfully categorise deaths, and work closely with Integrated Care Boards and other healthcare organisations in Norfolk and Suffolk. Once collated, the information is reported internally and externally, and used to inform improvements to our services.
When we routinely review the deaths of our service users as part of our screening process, there are some deaths which we cannot categorise. This could be due to the absence of a coroner’s report and the absence of a complete report from a medical examiner. Deaths which have been placed in this category will be updated as soon as we have a confirmed cause of death shared with us.
Caroline Donovan, Chief Executive of Norfolk and Suffolk NHS Foundation Trust, said : “I am pleased with the commitment, focus and determination of our staff who continue to work hard to ensure mortality data collection, analysis and reporting continues to be one of our top priorities as a Trust.
“I am particularly pleased that we have liaised very closely with a number of service users, carers and bereaved families to gain some very clear and vital thoughts on how we report this data, including the language used, through to the format and presentation.
“The collection, analysis and reporting of mortality data continues to be overseen by our Governance and Safety advisor, Gary O’Hare who will continue to work with our mortality team and wider organisation to ensure we embed this vital new way of working, which is crucial to our transformation and improvement work.
“I would like to share a personal thank you to our service users, families, carers and staff who have enabled us to develop such a robust system and process to support us on our journey to become a safer, kinder and better organisation. We will continue to work together to ensure clear and co-designed collection, analysis and reporting of mortality data across the Trust.”
The new mostly automated system was developed with the support and contribution of wider partner organisations, including both Integrated Care Boards and NHS England. During the platform build and on an ongoing basis, an action focused group, including representation from service users, carers and bereaved families and carers continues to support ongoing discussion and development.
Tracey Bleakley, Chief Executive Officer, NHS Norfolk and Waveney and Dr Ed Garratt, OBE, Chief Executive Officer, NHS Suffolk and North East Essex, said : “It is pleasing to see progress in this vital area of improvement and transformation across both the Trust and wider Integrated Care Systems covering Norfolk and Suffolk.
“The Independent Review of Mortality led by Grant Thornton made it clear that improvement was needed in the collection, processing and reporting of mortality data across the Trust.
“The new mortality reporting system is welcomed across both Integrated Care Systems, and we will continue to work with and support NSFT to ensure that the data is used to identify areas where further improvement can be made to improve the outcomes and experiences of our residents, service users, families and wider communities across Norfolk and Suffolk.”
What the data shows for 1 November 2023 to 31 January 2024
- Expected natural cause of death : 147 deaths, 34% as a percentage of all deaths during the period
- Unexpected natural cause of death : 209 deaths, 48% as a percentage of all deaths during the period
- Unexpected, unnatural cause of death : 15 deaths, 3% as a percentage of all deaths during the period
- Unable to obtain/awaiting cause of death : 66 deaths, 15% as a percentage of all deaths during the period.
The source of the data is deaths identified via the national NHS Spine, Trust EPRs and clinician reported Datix incidents. The period relates to deaths notified to NSFT between 1/11/23 and 31/01/24 inclusive. The data is reflective of the position as at 15/03/24. The data includes patients who died with an open referral to NSFT services; or who died within 6 months of discharge from NSFT services; or had a contact or continuation note added to their record within the 6 months prior to their death; and were considered to be under NSFT care following a manual screening process by NSFT's Mortality team
Key steps in our new mortality reporting process
How NSFT is notified of a death - NSFT has a new, mostly automated database which came into use on 1 November 2023. A list of individuals who have passed away is updated daily with notifications of deaths from our Electronic Patient Record (EPR) systems and from a Service User Death Report (SUDR). The SUDR is a daily notification from a national NHS source of any deaths associated with the NHS patients. A patient’s GP is responsible for updating this national source of data. This information is shared safely and securely with us.
Someone passes away - It is always devastating when a loved one, family or friend passes away. This could be for a number of different reasons. NSFT’s new robust screening process receives notifications of every death for patients who died whilst open to NSFT services or within 6 months of their discharge. Every one of these is then manually screened to assess whether they meet the criteria for reporting as ‘Under NSFT care’. The system also identifies which care group the individual was receiving care from or which care group they were discharged from.
What we do and who we work with to assign information - When we receive these daily updates, a dedicated team of NSFT staff analyse the details of those who have sadly passed away. This team includes clinicians and experts who have vast experience of analysing complex information. Using our new system, we identify people that have passed away whilst open to NSFT services, or within six months of discharge from our services. For those records that are confirmed as being under NSFT care we then establish cause of death and categorise these into one of five categories.
How is the information assigned and why - Our five categories identify the cause of death of loved ones who have passed away. These categories are: expected natural, unexpected natural, unexpected unnatural, awaiting cause of death, unable to obtain cause of death. By using these categories, we are able to analyse the data and in particular, identify loved ones who passed away which could be related to the quality of care they received from our services.
Ongoing reporting and next steps
Reports will be available on a bi-monthly basis, published as part of our Board papers, as part of our ongoing commitment to improve outcomes and experiences for our service users, families and carers across Norfolk and Suffolk.
A linked piece of work is taking place to review our legacy mortality reporting, of all deaths from April 2019 to the end of October 2023. We will publish a full report in the coming months.
Our board meeting on 28 March, which can be joined here, will include the following paper: Learning From Deaths Quarterly report March 2024 [pdf] 2MB.