John Scott

NHS’

Digital

: ; 1 Trevelyan
j H Square
: : Boar Lane Leeds
1 AMI et emee. | : LS1 6AE

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0113 397 3614

Ms Veronica Hamilton-Deeley
The Coroner’s Office
Woodvale

Lewes Road

Brighton

BN3 2QB

Our reference: LTO02005
Your reference: VHD/ST/00921-2018
48 May 2019

Dear Ms Hamilton-Deeley
Inquest into the death of John Scott

tam writing in response to a Regulation 28 report received from HM Senior Coroner, dated 14th
February 2019. This follows the death of John Scott who sadly passed away on 27" September
2018. This was followed by an investigation and inquest which concluded on 8" February 2019.
NHS Pathways is the clinical decision support software used by all 111 service providers,
and some 999 ambulance service providers including South East Coast Ambulance
Service. | an x EE, SPQ and am writing in my capacity as
Deputy Clinical Director, NHS Pathways, NHS Digital.

HM Coroner has raised the following matters of concern with regards to NHS Pathways:

(1) With regard to the questions asked when an emergency call is made to South East
Coast Ambulance Service my view is that the additional questions should be asked:

1. Is there anyone else with you or are you alone? If there is anyone else with you may I,
please speak to them:

2. If the caller is alone: we will be asking you not to ring anybody because we need to

consider the possibility that we will need to ring you back however, if you want to phone
for somebody to come and bring you some support and company could you please do
that within the next 15 minutes from now.
At the end of the call when the Pathways aspect of the call is ended why do you not
explain to the person ringing you, about the likely timing of the ambulance at this stage
and therefore, the estimated time of arrival. If at that stage the estimated time of arrival
is two hours or more, why do you not suggest to the patient that they may like to make
arrangements to get themselves to hospital without an ambulance?

information and technology www.digital.nhs.uk
for better health and care enquiries@nhsdigital.nhs.uk

3. With regards to pathways | understand that they have their particular questions but how
can a person who is alone when they ring the ambulance service phone the ambulance
service back if they become unresponsive? This is nonsense and may well confuse the
patient ringing.

4. Since we were dealing at this inquest with a case of previously undiagnosed abdominal
aortic aneurysm and since this is not an unusual scenario for Pathways and South East
Coast Ambulance to come across, is it not possible to ask the patient whether they can
feel anything at the site of the pain e.g. a pulsating mass. This if it is felt, could be a clear
diagnostic sign.

NHS DIGITAL’S RESPONSE

For information, | have provided below a short summary of the functions that NHS Pathways
performs and the governance that underpins it. | have also attached to this letter a Coroner's
Information Pack which provides further details and may be useful for your future reference.

Function of NHS Pathways

NHS Pathways is a programme providing the Clinical Decision Support System (CDSS) used
in NHS 111 and half of English ambulance services. This triage system supports the remote
assessment of over 13 million calls per annum. These calls are managed by non-clinical
specially trained call handlers who refer the patient into suitable services based on the
patient's health needs at the time of the call. These call handlers are supported by clinicians
who are able to provide advice and guidance or who can take over the call if the
situation requires it. The system is built around a clinical hierarchy, meaning that life-
threatening problems assessed atthe start of the call trigger ambulance responses, progressing
through to less urgent conditions which require a less urgent response (or disposition) in other
settings.

Governance _of NHS Pathways

The safety of the clinical triage process endpoints resulting from a 111 or 999 assessment using
NHS Pathways, is overseen by the National Clinical Governance Group, hosted by the Royal
College of General Practitioners. This group is made up of representatives from the relevant
Medical Royal Colleges. Senior clinicians from the Colleges provide independent oversight and
scrutiny of the NHS Pathways clinical content.

Alongside this independent oversight, NHS Pathways ensures its clinical content and
assessment protocols are consistent with the latest advice from respected bodies that provide
evidence and guidance for medical practice in the UK. In particular, we are consistent with the
latest guidelines from

e NICE (National Institute for Health and Clinical Excellence)

e The UK Resuscitation Council

e The UK Sepsis Trust

information and technology www.digital.nhs.uk
for better health and care enquiries@nhsdigital.nhs.uk

To specifically answer the concerns raised:

Is there anyone else with you or are you alone? If there is anyone else with you may |
please speak to them:

Call handiers using NHS Pathways are always trained to speak directly with the patient when it
is a 3% party call, this ensures that the questions being asked are answered as accurately as
possible to ensure both a safe outcome and that questions are not mis-interpreted through a 34
party.

Call handlers are not trained to ask if there is someone else with a 1*' party caller, however this
is assessed on a case by case basis as there are certain situations where it may not be
appropriate to speak with the patient including, but not limited to, children of certain ages, callers
with communication difficulties, those with hearing disabilities or so ill they cannot speak.

The decision whether to ask call handlers to ask to speak to someone else if they are with the caller
would be an operational decision for South East Coast Ambulance Service as NHS Pathways
cannot mandate this.

If the caller is alone: we will be asking you not to ring anybody because we need to
consider the possibility that we will need to ring you back however, if you want to phone
for somebody to come and bring you some support and company could you please do
that within the next 15 minutes from now.

Within NHS Pathways, where there is an ambulance dispatch in both 999 and 111, callers are
advised to not to ring anybody else in case the ambulance service needs to call the patient back
for example to confirm the address or any special requirements like entry information. This is
especially important in calls generated from 111 as these are automatically sent through to the
ambulance service and the service that has received the case may need to call back.

This script forms part of the closing instructions which were reviewed in 2016 by NHS Pathways
and at the time with 6 ambulance service trusts using NHS Pathways. The agreement was for
this instruction to remain for the reason outlined above.

NHS Pathways will review this instruction in line with its review process and consider adding in
a statement to “call someone else” and work closely with all 999 services using NHS Pathways
in this development. If changes are required these will be incorporated into release 19 (due for
deployment May 2020) following NHS Pathways robust processes for authoring, assuring, testing
and deployment of clinical content.

At the end of the call when the Pathways aspect of the call is ended why do you not
explain to the person ringing you, about the likely timing of the ambulance at this stage
and therefore, the estimated time of arrival. If at that stage the estimated time of arrival
is two hours or more, why do you not suggest to the patient that they may like to make
arrangements to get themselves to hospital without an ambulance.

Within NHS Pathway release 17 which is being deployed from 5" May 2019 call handlers will
be provided with a script to advise callers that an ambulance aims to be with you within x
minutes or hours. This was introduced to enable patients to make an informed decision as to
whether to wait for that ambulance or, where safe, make their own way to hospital.

Information and technology www.digital.nhs.uk
for better health and care enquiries@nhsdigital.nhs.uk

However, exact times cannot be given by NHS Pathways as this information can only be
provided by South East Coast Ambulance Service based on their live operational position and
so NHS Pathways cannot comment further on this point.

With regards to pathways | understand that they have their particular questions but how
can a person who is alone when they ring the ambulance service phone the ambulance
service back if they become unresponsive? This is nonsense and may well confuse the
patient ringing:

For all calls that go through NHS Pathways, care advice and closing instruction are provided at the
end of each call by the call handlers. This advice instructs the patient how to look after themselves
either while waiting for an ambulance to arrive or another health care professional to contact them
or what to do if there is any deterioration.

NHS Pathways constantly reviews all clinical content and is currently reviewing all aspects of the
care advice given. One part of this review by NHS Pathways will be looking at the worsening advice
which is currently given, this will include specifically reviewing the advice to call 999 if deterioration
happens, such as for 1 party callers becoming unresponsive, as you suggest.

Any changes will be incorporated into release 19 (due for deployment May 2020) following NHS
Pathways robust processes for authoring, assuring, testing and deployment of clinical content.

Since we are dealing at this inquest with a case of previously undiagnosed abdominal
aortic aneurysm and since this is not an unusual scenario for Pathways and South East
Coast Ambulance to come across, is it not possible to ask the patient whether they can
feel anything at the site of the pain e.g. a pulsating mass. This if it is felt, could be a clear
diagnostic sign.

Abdominal aortic aneurysms (AAA) represent an important diagnostic challenge. The majority
of aortic aneurysms are asymptomatic, with the classic presentation for a ruptured aortic
aneurysm being back pain with or without abdominal pain, and a pulsatile mass. However,
this triad is present in only 25-50% of cases.

Most AAA rupture into the retroperitoneal cavity (the space at the back of the abdominal
cavity). The precise site of the rupture will give rise to the different common and uncommon
presentations.

Academic studies on abdominal palpation, by trained clinicians, for identifying the presence
of AAA have shown not only poor diagnostic accuracy but also wide interobserver variability,
affected by the size of both the aneurysm and the patients’ abdomen.

Telephone symptom-based assessment presents significant challenges relating to eliciting
clinical signs and in determining the reliability of the findings. This is especially so in relation
to layperson palpation. Asking an individual or their carer to determine the presence of a
possible ‘pulsating mass’ would be very difficult over the phone. This could lead to an increase
in call length due to the need to articulate to a lay person what they are looking for and what
palpation means. Call handlers often have to transfer the call to a clinician due to the
difficulties in interpreting the responses, thereby resulting in further increases in call length.
The end result is a significant delay to ambulance dispatch for a time critical condition.

information and technology www.digital.nhs.uk
for better health and care enquiries@nhsdigital.nhs.uk

NHS Pathways recognises the serious nature of a ruptured AAA. Within the current triage,
symptoms relating to hypovolemia and critical illness are identified and give rise to an
emergency ambulance dispatch. NHS Pathways is currently undertaking a detailed review to
determine whether additional discriminators can be used over the phone to enhance the
triage. These include utilising risk factors like the patients age together with specific questions
to determine the onset and nature of the pain (including its location, nature and severity) and
compounding these with symptoms relating to organ dysfunction. The presence of a pulsatile
mass, even if it could be reliably identified, would not necessarily change the disposition given
the seriousness of the symptoms already identified by the earlier questions. These changes
will be incorporated into release 18 (due for deployment 7" October 2019) following NHS Pathways
robust processes for authoring, assuring, testing and deployment of clinical content.

lam happy to answer any further enquiries from HM Coroner.

Yours sincerely

Deputy Clinical Director
NHS Pathways

Information and technology www.digital.nhs.uk
for better health and care enquiries@nhsdigital.nhs.uk

South East Coast Ambulance Service NHS)

NHS Foundation Trust

q South East Coast Ambulance
| Service NHS Foundation Trust
Nexus House
Gatwick Road
Crawley
RH10 9BG

Mrs V Hamilton-Deeley 0300 123 0999
HM Senior Coroner for Brighton and Hove

The Coroner's Office

Woodvale

Lewes Road

Brighton

BN2 3QB

By email only
5 April 2019

Dear Madam
John Scott Deceased

| write in response to your Regulation 28 Prevention of Future Deaths report dated 14
February 2019, issued following the inquest into the death of Mr Scott. | would like to
convey my condolences to Mr Scott’s family.

| shall address your numbered concerns in turn.

1. The question of whether a patient is alone would have to form part of the script
written by NHS Pathways. The direction “once this phone call is finished, don't ring
anyone else in case we need to call you back’ is part of the current Pathways script.
Giving the caller the opportunity to ring someone to come to them if they are alone
therefore also falls within the NHS Pathways part of the script. It would follow
naturally from asking the caller if they are alone. We are obliged to adhere to the
Pathways script to maintain our Pathways licence. Whilst we can add our own script
after the Pathways script, it would not be sensible and would lead to confusion if we
were to contradict instructions we had just given as part of the Pathways script. We
therefore defer to NHS Pathways to make any appropriate amendment or addition
to the script to enquire as to whether the patient is alone and to amend the
instructions to them accordingly. We meet with NHS Pathways on a monthly basis
and we have discussed this matter with them. We understand that it is under their
consideration (see more in this regard at point 3 below).

+

Your Service,
your call

{

David Astley Interim Chief Executive: Dr Fionna Moore

2. Paragraph one — see above.

Paragraph two - We cannot provide a timeframe as there are so many factors
involved in determining when an ambulance resource will arrive with any particular
patient. We do have a “surge script” which we use when calls could potentially wait
longer than the specified timeframe set by the category of call (eg. category 3 - 2
hours). | attach a copy of the script.

Clinicians and the Clinical Safety Navigator constantly review calls in the waiting
stack and will review incidents that may be deemed appropriate and safe for the
patient to make their own way to hospital. The clinician will exclude any high risk
symptoms that may put the patient at risk if they made own way, such as the patient
feeling faint and can only drive themselves - this would not be appropriate as they
could collapse whilst driving and cause greater harm to themselves and other
members of the public.

3. The advice to call back to the ambulance service if the patient becomes
unresponsive is part of the NHS Pathways prescribed script and as such is outside
of SECAmb’s control. In relation to this issue and those above, NHS Pathways have
advised us that care instructions are currently being reviewed for inclusion hopefully
into Pathways version 18 which is due for release in the autumn of this year. First
party instructions (instructions directly to the patient) will now be part of that review.
Given the time constraints they have on releases (including testing and clinician
governance prior to release), it is possible that resulting revisions will be included in
version 19 rather than version 18.

4. Allclinical questions that are asked as part of the NHS Pathways triage system are
set by the NHS Pathways cligi ‘as such, cannot be changed by
SECAmb. We understand vena NHS Pathways that the issue of
additional questions to exclude abdominal aortic aneurysm will be part of a review

into severe abdominal pain which NHS Pathways already have under way.

Please do not hesitate to contact me if | can assist you further.

Yours sincerely

ie

Acting Chief Executive Officer
South East Coast Ambulance Service NHS Foundation Trust

Enc: Surge script