national audit of care at the end of life (nacel) round
TRANSCRIPT
1 | P a g e NACEL Guidance Notes
NATIONAL AUDIT OF CARE AT
THE END OF LIFE (NACEL)
Round three (2021)
Acute and Community Guidance Notes
England & Wales
April 2021
(Last updated on 26.04.2021)
Should you have any queries about completing any element of NACEL, please contact
the NACEL Support Team by phone on 0161 521 0866 or via email:
The helpline is available from Monday – Friday from 9.00 am – 5.00 pm.
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Contents Page
1. Introduction & participation 3
2. Key dates 4
3. Registration 4
4. NACEL Quality Survey Proforma 5
5. Data collection 6
6. Finalising data collection and next steps 15
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NATIONAL AUDIT OF CARE AT THE END OF LIFE (NACEL) ROUND THREE (2021)
GUIDANCE NOTES FOR ALL ACUTE AND COMMUNITY ORGANISATIONS IN ENGLAND AND WALES
1. Introduction & participation
This document is intended to provide guidance on each aspect of the National Audit of Care at the End
of Life (NACEL) for all acute and community organisations in England and Wales. Separate guidance
documents are available for mental health providers and organisations in Northern Ireland.
You can find out more about the scope, timescales, information governance guidance for the audit
and key resources and documents via the NACEL resources webpage. The FINAL data specifications
can be downloaded from the NACEL audit guidance webpage.
In this period of excess deaths, it is more important than ever to understand the care patients are
receiving and the experience of those important to the dying person. NACEL did not run in 2020 due
to the pandemic, which, if NACEL were to be delayed further, would mean a further two years with
no national data on the quality and experiences of end of life care in England and Wales.
Round three of NACEL will now be completed in 2021.
The NHSEI guidance (26-01-2021) still stands and the importance of clinical audit activity is highlighted
although not mandated: ‘Clinical audit: Given their importance in overseeing non-Covid care, clinical
audits will remain open. This will be of particular importance where there are concerns from patients
and clinicians about non-Covid care such as stroke, cardiac etc. However, local clinical audit teams will
be permitted to prioritise clinical care where necessary – audit data collections will temporarily not
be mandatory.’
To make the audit an appropriate and manageable process for Trusts/Health Boards in the current
circumstances the Quality Survey and Staff Reported Measures now stand as optional elements to
NACEL round three, leaving individual Trusts to make the decision to take part in these elements,
based on their own local context. Wales have opted out of the Quality Survey for NACEL round three,
therefore Welsh Trusts/Health Boards should not complete the Quality Survey but complete the other
elements of data collection.
If your organisation decides to not take part in the full NACEL audit, please notify the NACEL Support
Team, with the rationale and provide assurance that feedback from bereaved carers is still being
collected locally.
NACEL round three (2021) is open to all acute and community organisations who provide inpatient
services. In the third round of NACEL; mental health organisations are included as a spotlight audit.
On the advice of the Mental Health Clinical Lead, the Mental Health Spotlight Audit will go ahead as
planned, and Mental Health inpatient providers should aim to complete all 4 elements of NACEL.
Please note where the term ‘nominated person(s)’ is used, this refers to carer, relative, next of kin or
person close to the patient.
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2. Key dates
3. Registration
To register for NACEL please log in to the members’ area. If you registered for round three of the
audit in 2020, your registration details should be saved from last year. You can make any
amendments to your registration at this point.
Upon registration, organisations will be asked to provide details of the project lead for the audit.
• The project lead is the overall lead and the main point of contact throughout the audit. The
project lead has full access to all the elements of the audit and can assign submissions,
submission leads, and deputy project leads at any stage of data collection. The project lead is
responsible for the overall coordination of the audit within their organisation.
Unless already registered, a default submission will be created for you upon registration.
Organisations should register individual submissions for each acute and community hospital within
their Trust/HB. If you wish to combine any of these hospitals into one submission, you may do so.
However, it will mean that there is only one report for the combined sites. If you wish to receive a
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report for each individual hospital, we ask that you register them separately. If you would like further
guidance on this, please call the NACEL Support Team on 0161 521 0866 who will be able to advise.
Each submission can be assigned a submission lead. The submission lead will be responsible for co-
ordinating the data collection for the submission and will be an additional point of contact (along with
the project lead) for the NACEL Support Team.
Organisations can also appoint deputy project leads.
• Deputy project leads will have the same access to the data collection pages as the project
lead, however, they will not be the main point of contact for the NACEL Support Team. A
maximum of 6 deputy project leads can be appointed.
For any assistance with registration please contact the NACEL Support Team on 0161 521 0866 or
4. NACEL Quality Survey proforma
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The Quality Survey is an online questionnaire completed by the nominated person(s) for patients
who died within your hospital/site between 1st April and 31st August 2021. All organisations will
send out letters to the nominated person(s) inviting them to complete the survey.
On the registration page, you will have the opportunity to download the Quality Survey Proforma.
This proforma allows participants to collect and save the contact details of the nominated person(s).
This information can be copied into the Quality Survey Letter Generator once data collection opens
on 1st June 2021. A separate proforma should be used per submission. For more information on
the Quality Survey process, please see page 8.
As Wales have opted out of the Quality Survey for NACEL round three, this element is no longer
required by Welsh Trusts/Health Boards.
5. Data collection
Data collection is open from 1st June 2021 until 8th October 2021. NACEL data collection is split into
four elements:
• Organisational Level Audit
o Trust/HB overview – this is completed once for each organisation
o Hospital/site overview – this is completed for each hospital/site registered
• Quality Survey – this is completed for each hospital/site registered (optional)
• NEW Staff Reported Measure - this is completed for each hospital/site registered (optional)
• Case Note Review (including an audit summary) - this is completed for each hospital/site
registered
To access the NACEL data collection pages, log-in to the members’ area and select the ‘Data
Collection’ tab next to NACEL on the home page.
If you need assistance with log-in details, please contact NACEL support on 0161 521 0866 or
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If your organisation has more than one submission, please navigate between submissions using the
submission drop down underneath the Trust/HB overview steps.
Please note: When accessing the NACEL data collection pages, it is recommended that you use
Google Chrome as your web browser, not Internet Explorer.
Step 1 of 6: Trust/HB overview
The Trust/HB overview will be completed once for acute/community organisations and once for
mental health providers. This will focus on trust/HB policies and guidelines.
When completing the Trust/HB overview, please ensure you complete the acute/community
version.
To access the Trust/HB overview questions, select the blue ‘Trust/HB Organisational Overview’ tab.
To download a copy of the data specification, select the ‘Download Data Specification’ tab. This is to
enable you to source the required data, before inputting it on the online data collection page.
Step 2 of 6: Hospital/site overview
The hospital/site overview will be completed once per submission. This will focus on the service
models and Specialist Palliative Care workforce within the hospital/site.
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To access the hospital/site overview questions, select the blue ‘Hospital/Site Collection’ tab. To
download a copy of the data specification, select the ‘Download Data Specification’ tab. This is to
enable you to source the required data, before inputting it on the online data collection pages.
To navigate between sections within the hospital/site data collection pages, use the section
headings on the left hand of the page. Once data has been entered select ‘Save’ before selecting a
new section or leaving the page.
Please note: If you navigate away from the page without saving, the data will be lost and will need
to be resubmitted. Definitional guidance can be found next to relevant questions in the data
specification or by selecting the question mark logo to the right of the answer box.
Step 3 of 6: Quality Survey (Optional)
This element is optional if Trusts/Health Boards can provide assurance to the NACEL Support Team
that they are covering this in some other way by listening to bereaved carers and taking into account
their feedback.
Wales have opted out of the Quality Survey for NACEL round three, for acute and community
providers, therefore this step is no longer applicable to Welsh Trusts/Health Boards.
The Quality Survey is a questionnaire that will be sent to the ‘nominated person(s)’ of all patients
who died within between 1st April 2021 and 31st August 2021. The audit period for this element has
been extended with the aim to increase the number of Quality Survey responses. Each submission
should participate in the Quality Survey element.
The deaths that should be excluded from this element of the audit are:
• Deaths of patients aged under 18
• Deaths which occurred in A&E
• Deaths which occurred within 4 hours of admission
• Suicides
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• Maternal deaths
It is the Trust/HB’s responsibility to ensure that the nominated person(s) for deaths of the above
nature are not sent a Quality Survey letter. In preparation for the Quality Survey, we ask that you
explore how to collect the name(s) and address(es) of the nominated person(s) for all deaths
occurring between 1st April 2021 and 31st August 2021. We understand that practice varies across
organisations, so you might like to find out where this information is currently held in your
organisation. This may involve contacting your organisation’s bereavement office for assistance.
It is advised that you review the NACEL Information Governance guidance for Trusts/UHBs and check
your organisation’s Fair Processing Notices cover the potential use of carer data to send clinical
surveys.
To give carers early sight that they may be invited to take part in the NACEL Quality Survey, here is
an example poster that can be hung up around wards. This is optional.
You can use the ‘Quality Survey Proforma’ (referred to on page 5) to start collecting the following
contact details for the nominated person(s): Title, name, and address.
Once all the contact information has been collected, it can be used in the Quality Survey letter
generator. Each submission will be given access to download a Quality Survey letter generator once
data collection opens on 1st June 2021. This document will be used to record the nominated person’s
details (title, name and address) and generate the Quality Survey letters. Once the letters inviting
the nominated person(s) to complete the survey have been generated, they can be printed onto
letter headed paper to be sent to the nominated person(s). The Quality Survey letter is a 3-page
document, so you may wish to set your printer setting to print on both sides.
Each letter will be unique to the nominated person(s), inviting them to visit a webpage to complete
the Quality Survey questionnaire. The webpage URL link is included in the letter, as well as a QR code
that can be scanned. A unique code will be included in the letter for the nominated person(s) to
enter their feedback under. The responses will be automatically linked to the submission.
The nominated person(s) also has the option to complete the questionnaire over the telephone by
calling the Patients Association Helpline. The final page of the Quality Survey letter will give the
reader instructions on how to get in contact with the Patients Association to complete the
questionnaire in the top 10 languages spoken in the UK.
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To access the Quality Survey letter generator, select the ‘Download’ button. Full instructions on how
to use the letter generator can be found on the first tab of the downloaded tool. Please follow the
steps in order.
Before sending the Quality Survey letters, please consider the following:
• It is recommended that the sending out of letters is staggered, with a 2-month gap between
patient’s death and posting i.e., letters for April deaths sent in June 2021 and letters for
August deaths in September 2021.
• No Quality Survey Letters should be sent out to the nominated person(s) for people who
died after 31st August 2021.
• Do not send Quality Survey letters after 17th September 2021, this is to allow the nominated
person(s) enough time to complete the questionnaire before the data collection page closes.
• The Quality Survey data collection pages will be open until 8th October 2021 to allow time
for the nominated person(s) to complete the questionnaire.
Please note: You will need to save the Quality Survey letter generator locally, as this document will
be used throughout the data collection process. Do not share this document outside of your
organisation.
Whilst NACEL are relying on the Trust/HB to send the Quality Survey letter out, we are keen to
ensure that the bereaved relatives of those who have died from a BAME community respond to the
request to feedback on their experience of end of life care. In view of this, the Trust/HB should
explore possible options on how best to communicate with BAME communities to encourage their
participation in the Quality Survey, so that the audit results are representative of the population
served.
Suggestions on how to increase your NACEL Quality Survey response rate:
• Use of the example Quality Survey promotional resources: poster, leaflet and tweets. These
are optional & templates only.
• Link up with your local BAME communities, to ask them to help promote the NACEL Quality
Survey element i.e council of mosques, South East Asian community etc.
• Ask Medical Examiners to feature the NACEL Quality Survey in their calls to carers. Check
whether the carer has received the Quality Survey letter and encourage carers to submit
their feedback.
• Involve Chaplains in this process. Chaplains could remind carers of the importance of the
survey in improving end of life care for future families.
• Follow up phone calls to bereaved carers.
Step 4 of 6: Staff Reported Measure (Optional)
The Staff Reported Measure is a new element for NACEL round three. This is a survey aimed at
members of staff who are most likely to come into contact with dying patients and those important
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to them. The survey will ask questions pertaining to staff confidence and experience in delivering
care at the end of life.
This element is optional, given the impact that COVID-19 has had on staff morale and exhaustion. If
your organisation does not take part in this element, please notify the NACEL Support Team. Where
Trusts/Health Boards wish to better understand the experience of their staff and their skills/training
for care of the dying, please complete the Staff Reported Measure element for each submission.
Staff complete an online questionnaire using the link in the blue box. The link can be copied and
pasted into an email or any other Trust/HB communication. Staff use the link in their web browser to
access the online questionnaire. In addition to the URL link, the online survey can be accessed by
scanning a QR code. There is an option to download the QR code from the data collection page,
which can likewise be disseminated to staff via email, ward posters etc. The responses will be
automatically linked to your submission and all responses are anonymous.
The target sample size for the Staff Reported Measure is:
• Acute sites – 100 surveys completed by staff
o To receive 100 staff responses, we recommend you send the link to approximately
400 staff.
• Community sites – 20 surveys completed by staff
o To receive 20 staff responses, we recommend you send this link to approximately
100 staff.
The number of staff responses can be monitored on the data collection page. This will help you to
gauge whether the link needs to be sent to more staff to increase your number of responses.
The NACEL project lead should circulate the survey link with members of staff who are most likely to
come into contact with dying patients and those important to them. This could include, but is not
limited to, the following staff groups:
• Nursing staff – all bands
• Doctors - all grades
• Allied Healthcare Professionals
• Social Workers
• Therapy Assistants
• Pharmacists
Example
code
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• Ward based admin staff
• Domestics
• Any other staff you feel may fulfil the brief
The main areas to cover are:
• Acute assessment wards (medical and/or surgical)
• Acute medical admissions wards
• Rehabilitation wards
• Oncology wards
• Cardiology wards
• Respiratory wards
• Renal wards
• Care of the elderly wards
• Trauma wards
• Neurological wards
• Orthopaedics wards
• Intensive care/ High Dependency Unit/Coronary care Units
Please do not send the Staff Reported Measure to any Maternity staff, Paediatric staff or any
wards that will not have people dying on them. NACEL only covers adults aged 18+ at the time of
death, therefore staff who care for dying children and their families should not complete this
questionnaire.
To help publicise the Staff Reported Measure, here is a template poster that can be hung up in staff
rooms etc. The unique URL survey link will need to be copy and pasted into the template poster.
There are various ways to disseminate the link i.e., email, posters, or newsletters etc.
Step 5 of 6: Case Note Review
The Case Note Review is a patient level data collection focusing on recognition of imminent death,
individualised plan of care and involvement in decision making. Each submission should complete a
Case Note Review for 40 deaths using the following criteria: -
Inclusion criteria:
• Adult (18+) only deaths
• Acute hospitals should aim to audit 20 consecutive deaths occurring between 12th April
2021 and 25th April 2021, and 20 consecutive deaths from 1st May 2021 and 14th May 2021.
• Community sites should aim to audit 40 consecutive deaths occurring between 1st April
2021 and 31st May 2021.
Exclusion criteria:
Deaths which are classed as "sudden deaths" are excluded from the Case Note Review. These are
deaths which are sudden and unexpected; this includes, but is not limited to, the following:
• All deaths in Accident and Emergency departments
• Deaths which occurred within 4 hours of admission
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• Deaths due to a life-threatening acute condition caused by a sudden catastrophic event,
with a full escalation of treatment plan in place.
• Suicides
• Maternal deaths
These deaths would not fall into either of the categories of death. The Case Note Review will only
audit deaths which fall into the following two categories:
• Category 1: It was recognised that the patient may die - it had been recognised by the
hospital staff that the patient may die imminently (i.e. within hours or days).
• Category 2: The patient was not expected to die - imminent death was not recognised or
expected by the hospital staff. However, the patient may have had a life limiting condition
or, for example, be frail, so that whilst death wasn't recognised as being imminent, hospital
staff were "not surprised" that the patient died.
To complete the Case Note Review, each patient must be assigned a ‘case code’ to submit their data
under, this is to ensure no patient identifiable data is submitted. To do this select ‘Add Case Note’, or
alternatively add 10 by selecting ‘Add 10 Case Notes’.
We ask that all project leads/submission leads keep an internal log of the case code assigned to each
patient. This will enable project leads/submission leads to keep track of the patients and their Case
Note Review data. Project leads/submission leads can extract a copy of the full list of case codes by
clicking the ‘Download Case Codes as .CSV’ tab.
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Please note: Under no circumstances should this information be shared outside of your organisation.
To download a copy of the data specification or the definition of deaths for the Case Note Review,
please select the relevant tab.
To download a copy of the data specification, select the ‘Download Data Specification’ tab. This is to
enable you to source the required data before inputting this to the online pages. To download the
definitions of deaths, select the ‘Download Definition of Death Guidance’ tab. This document will
explain the Case Note Review exclusions and the difference between Category 1 and Category 2
deaths.
Once each case code has been added, you will be able to assign a reviewer, by including their initials
in the ‘Reviewer Initials’ column. The status of each Case Note Review will be included in the ‘Status’
column, this will allow each submission to track which case codes, are ‘Not started’, ‘In progress’ and
‘Complete’. To mark a Case Note Review as ‘Complete’, select the green tick to right of the status. To
access the Case Note Review questions for each case code, select ‘Open’ to the right of the selected
case code.
To navigate the questions within the Case Note Review data collection pages, use the section headings
on the left hand of the page. Once data has been entered, select ‘Save’ before selecting a new section
or leaving the page.
Please note: If you navigate away from the page without saving, the data will be lost and will need
to be resubmitted. Definitional guidance can be found next to relevant questions in the data
specification or by selecting the question mark logo to the right of the answer box.
Step 6 of 6: Audit Summary
The final stage of data collection is the Audit Summary. This is a brief summary of the deaths
occurring within your organisation during the audit criteria period. To access the Audit Summary
questions, select the ‘Audit Summary Collection’ tab. To download a copy of the data specification,
select the ‘Download Audit Summary Specification’ tab. This is to enable you to source the required
data before inputting this to the online pages.
The timescales for the Audit Summary questions are dependent on the type of organisation
registered.
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6. Finalising data collection and next steps
Once you have completed all the data collection elements for NACEL, you can complete your
submission by clicking the green ‘Complete Submission’ tab. This will mean all the data submitted
will be read-only and no one can add, edit or delete any data. Project leads and deputy project leads
can use the ‘Edit Submission’ tab to reopen their submission’s data collection page. This allows
project leads and deputy project leads to make changes to their data until data collection closes on
8th October 2021. Only project leads and deputy project leads can edit the submission once it has
been completed.
On the data collection deadline (8th October 2021), all data collection pages will be locked, and the
data saved within these will be automatically submitted for analysis. At this point you will not be
able to access the data collection pages to add, edit or delete the data submitted. There will be no
extension to this data collection period.
A period of validation will take place during October and November 2021, and during this time you
may be contacted by the NACEL Support Team regarding any data issues. You will receive a draft
toolkit to review your position at the end of November and can use this to highlight any changes you
wish to make to your data. You can contact the NACEL Support Team throughout the validation
period to amend to your submitted data on 0161 521 0866 or email the NACEL Support Team on
Bespoke dashboards are due to be published in February 2022, with the national report to follow.
Thank you for your participation in NACEL round three.