national audit of care at the end of life (nacel) round … · 2021. 1. 18. · 3 | p a g e nacel...
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1 | P a g e NACEL Guidance Notes
NATIONAL AUDIT OF CARE AT
THE END OF LIFE (NACEL)
Round three (2021)
Mental Health Guidance Notes
England & Wales
January 2021
Should you have any queries about completing any element of NACEL, please contact
the NHS Benchmarking Network on 0161 521 0866 or email the NACEL Support Team
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 3
3. Registration 4
4. Quality Survey proforma 5
5. Data collection 6
6. Finalising data collection and next steps 13
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NATIONAL AUDIT OF CARE AT THE END OF LIFE (NACEL) 2020
GUIDANCE NOTES FOR ALL MENTAL HEALTH ORGANISATIONS
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 mental health inpatient organisations in England and Wales. A separate guidance
document is available for acute and community providers.
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.
NACEL round three was expected to start in 2020. However, due to the impact of Covid-19 on priority
clinical commitments, the 2020 data collection was cancelled. Round three of the audit will now be
completed in 2021.
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.
Please note where the term ‘nominated person(s)’ is used, this refers to carer, relative, next of kin or
person close to the patient.
2. Key dates
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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.
Organisations will be asked to provide details of the project lead for the audit.
• The project lead is overall lead and the main 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 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.
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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, will not be the audit’s 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
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 7.
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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 for each hospital/site registered
o Hospital/site overview – this is completed for each hospital/site registered
• Quality Survey - this is completed for each hospital/site registered
• NEW Staff Reported Measure - this is completed for each hospital/site registered
• Case Note Review (including an audit summary) - this is completed for each hospital/site
registered
To access the audit 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
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 mental health version.
To access the Trust/HB overview questions, select the blue ‘Trust/HB Collection – Mental Health”
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.
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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.
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 the questions 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 by selecting the
question mark logo to the right of the answer box.
Step 3 of 6: Quality Survey
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The Quality Survey is a questionnaire that will be sent to the ‘nominated person(s)’ of all patients
who died within the inpatient facility between 1st April 2021 and 31st August 2021. The survey is
designed to gain feedback from nominated person(s) on their experience of the care and support at
the end of life whilst under the care of a mental health inpatient unit. Each submission should
participate in the Quality Survey element.
The only deaths to be excluded from this element of the audit are:
• Deaths of patients aged under 18
• Deaths which occurred within 4 hours of admission
• Suicides
• Deaths in learning disability beds
• Deaths in addiction beds
• Maternal deaths occurring in a mother and baby unit
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
the 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 4) 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 the Quality Survey letter generator
before the audit period starts on 1st April 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. The Quality Survey letter is a 3-page document, so you may wish to set
your printer setting to print on both sides.
Once the letters have been created and printed, the organisation must decide how to distribute
these letters to the nominated person(s). If the staff feel comfortable, they can give the letters
directly to the nominated person(s) (for example in a bereavement pack). Alternatively,
organisations have the option to send the letter to the nominated person(s) by post.
Each letter will be unique to the nominate person(s), inviting them to visit a webpage to complete
the Quality Survey questionnaire. 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
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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.
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 is 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.
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. However, if the hospital/site would feel more
comfortable giving the letters to the carers in live time, due to a closer relationship with
those important to the patient, then please feel free to do so.
• 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.
Step 4 of 6: Staff Reported Measure
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The Staff Reported Measure is a new element for the third round of NACEL. This is a survey aimed at
members of staff who are most likely to come into contact with dying patients and those important
to them. The survey will ask questions pertaining to staff confidence and experience in delivering
care at the end of life.
Each submission should participate in the Staff Reported Measure element.
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. The responses will be automatically linked to your submission and
all responses are anonymous.
The target sample size for the Staff Reported Measure is:
• Mental Health submissions – should aim to receive 20 staff responses
o To get 20 staff responses, we recommend you send the 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 is requested to send the survey link out to 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
• Ward based admin staff
• Housekeepers
• Any other staff you feel may fulfil the brief
Please do not send the Staff Reported Measure to staff working in a mother and baby unit,
learning disability unit, addiction unit or Paediatric staff. NACEL only covers adults aged 18+ at the
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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 death and
individualised plan of care. Each submission will complete a Case Note Review for every death that
occurs within the audit period.
Inclusion criteria:
• Adult (18+) only deaths
• Audit every death within the audit period: 1st April 2021 – 31st August 2021.
Exclusion criteria:
• Deaths of patients aged under 18
• Deaths which occurred within 4 hours of admission
• Suicides
• Deaths in learning disability beds
• Deaths in addiction beds
• Maternal deaths occurring in a mother and baby unit
The Case Note Review will audit deaths which fall into one of 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). Life sustaining
treatments may still be being offered in parallel with end of life care.
Example: a patient on a mental health ward had been recognised by the MDT as being likely
to die within hours to days, and a referral may have been made to the local palliative care
service. Relatives may have been contacted, and anticipatory medicines may have been
prescribed as required for terminal symptoms.
• 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.
Example: a patient was known to have heart disease, COPD or cancer which needed ongoing
medical review. The physical health care plan may be up to date. Discussions about end of
life care will not have occurred with the patient or relatives and palliative care services were
not involved in their care. In accordance with trust/HB policy, the police and coroner were
required to be informed of the death.
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To complete the Case Note Review, each patient must be assigned a ‘case code’ to submit the 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.
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 it on the online data collection pages. To
download the definitions of death, 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 for mental health inpatient units.
Once each case code has been added, you will be able to assign a reviewer, by including their initials
in the ‘Reviewer’s 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.
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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 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 it on the online data collection page.
The timescales for Mental Health organisations completing the Audit Summary questions are from
1st April 2021 to 31st August 2021.
We recognise that the numbers of deaths in mental health inpatient units, falling within the agreed
criteria, will be low compared to acute and community sites. Therefore, every death should be
audited.
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.
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A period of validation will take place during October and November 2021, during this time you may
be contacted by the NACEL Support Team regarding any outlying data. You will receive a draft toolkit
to analyse 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 taking part in NACEL round three.