Cardiac Listening Event - Report from July 2014
Paediatric Cardiology Listening Event - 8th July
2014
Feedback Summary
Background
A listening event was held in July 2014 to gather feedback from
families, both directly and through support group representatives,
about their experience of the paediatric cardiology service. The
aim of this event was to take a first step in looking at how
families feel about the services to validate feedback already
received through questionnaires, comment cards and anecdotal
evidence, and discuss how the team, families and support groups
could work together to help develop the service in the future.
The Day
600 families who had been through the service in the last year
were invited to the event alongside local support groups. From this
we had 9 families express an interest but said they were unable to
attend and 19 parents and one patient who came on the day. We also
had a representative from Little Hearts Matters attend.
On asking participants what they wanted to achieve from
attending the event almost all of the attendees were clear that
whilst there had been some challenges within their patient journey,
they appreciated and were grateful for the care that Bristol had
given their child and were keen that the positives were shared as
well as the negatives.
We asked participants to comment on both positive and negative
experiences in several parts of the service.
Below is a short summary of the points raised around each area
discussed
Initial awareness of symptoms
Participants highlighted that communication, the timeframe, the
lead up to the diagnosis and the transfer to a surgical centre as
being the keys areas.
Participants commented that they appreciated frequent
communication feeding back that it is a particularly stressful part
of the journey and for which communication was essential. They felt
that once cardiac issue had been detected they were seen in a
timely fashion, which was seen an essential part of the service to
maintain.
In relation to the lead up to diagnosis many participants felt
that communication could be improved especially the time between
tests being completed and getting a confirmed diagnosis. Some
families had been given a provisional diagnosis at the referring
centre and had to wait several days to get this confirmed.
One family reported having a negative experience in terms of a
transfer from the children's hospital back to the referring
hospital. They felt communication could be improved between the
medical teams and parents.
Clinicians also needed to be aware when a child's cardiac
diagnosis was not their only condition and families commented on
the importance of all members of the MDT taking into account how
they impact on one another.
Priority areas to address/expand
-
How do we ensure optimal communication with families from the
point at which the possibility of a cardiac condition is
raised?
-
How do we ensure the MDT has a full picture of a patients
holistic needs.
Diagnosis
The positive experiences shared included feeling a connection
with the consultant and the team which felt reassuring and gave
confidence that advice and support was available if it was
needed. Families appreciated being given time and space to
adjust and take in the diagnosis, both at the initial breaking of
the news and in subsequent appointments and contacts.
The less positive experiences were around understanding the
impact of diagnosis and fears for the future of their child.
Some felt hospital professionals had been negative about their
child's potential, speaking about disability and special schools
before the child's problems could be quantified. Others were
concerned whether the diagnosis would create a fear and reluctance
to treat in other professionals such as GPs or dentists, or within
the school setting. There were some examples of
misinformation as to what the diagnosis might mean which led to
unnecessary anxiety. Again, lack of timescales for feedback
and delay in arrangements for follow up care or further diagnostics
were cited as causing distress, with families uncertain who to
approach to clarify progress.
Parents also spoke about 'joining a club you never wanted to be
part of'. They noted that a sense of belonging and being supported
by the team was valued, along with clear communication and accurate
information given at the right time. Recognition of the
impact of the diagnosis combined with a positive outlook for the
future was helpful. Where diagnosis was known at ante-natal
stage, clear planning and expectation management made the situation
less daunting and gave space for preparation. Diagnosis at a
later stage, either through routine tests or via emergency care
needs to follow the same pathway as soon as practically possible
and allow them to 'catch up' but at their own pace.
Priority areas to address/expand
-
How do we ensure we can offer the right time and space for
diagnosis conversations to take place?
-
How can we ensure families have the right support at the point
of diagnosis in all pathways?
-
What clinical information should be given at this stage and how
can families be supported to ensure they can take this in?
-
What information should be given about support services and the
wider team at this stage?
Tests and Scans
Several people reported that the amount, timing and
content of information made a big difference to their experience.
For example when tests were carried out and families received the
results quickly and or had quick referrals to onto further services
this was reassuring.
There were two main themes within this: content and
familiarity
Several people commented that particularly when inpatients they
didn't always have clear information about when, where and how
tests would be carried out. Families said it can be difficult to
prepare children and plan distractions if they don't know what will
happen when. Families talked feeling like having an element of
control when they had information even if this was someone saying
we don't know yet but this is the timescale or the process.
One family said that everything was calm and they prepared their
son well for surgery until they found out that only one of them
could go into the anaesthetic room; this immediately caused stress
for the young person and parents in choosing who should go. They
said that knowing this before would have meant that they planned
for this.
Families also asked for more information at the time around what
scans were showing at the time of the scan and a discussion with
parents about what should be said to the young person. Some
families mentioned worries that when discussions happen over a
child's head the child may be anxious about what is going on.
Many of the families talked about the information they had, from
the hospital about the hospital, about treatments and scans and
about support groups, commenting that they didn't always have the
information that they needed at the time they needed it.
Several families commented that when tests, for example echo's,
were carried out if often made a big difference to the young person
when this was the same person. Several families cited that one
particular staff member (Stella) was excellent. They commented that
when staff members knew their children well the children were
excited to come and the anxiety around tests was reduced because
the young people knew what to expect and knew they could trust that
particular staff member. Parents said that the appreciated
continuity of care.
Priority areas to address/expand
-
How can we streamline information to ensure families have
access to what they need when they need it?
-
How do we ensure as much continuity of care as possible within
the patient team?
-
How do we ensure that the timing of tests is as swift as
possible yet allows patients and families enough time to
prepare?
Inpatient and outpatients
Participants talked about their experiences of cancellations,
doctors, the high dependency unit, the ward environment and ward
care.
In regard to cancellations there was a universal understanding
of when these occur due to emergency admissions, and some families
appreciated the chance to be on a short notice list particularly
where they are local to the hospital. However, it was noted that
for teenagers, offering a quick admission sometimes meant that
there wasn't time to think about it at the time but support was
needed later.
Time spent on the ward could be challenging, especially where
families are aware of conversations taking place about them but not
share with them. Language also needed to be considered, not
only avoiding jargon but recognising what is appropriate to say in
front of the patient.
Handovers between levels of care could be better explained and
supported as there can be quite a jump from PICU to HDU to ward
level. It was also felt that staff needed support in this as
parents were not always confident in the new team and their
understanding of what was needed.
Parent involvement in care should be flexible enough to allow
parents the time and space to take on board what is happening but
still feel involved and engaged with their child's care. This
requires regular review and opportunity for parents to feed
back. Some parents cited problems with care which they had
not either know how to or felt able to raise and although they were
a minority and this issue was not scored highly when prioritised,
as review of the care processes involved in ward care, including
pain management and support for services such as dietetics would be
of benefit. Better breastfeeding support would be helpful
The ward environment could also be improved, and increased play
support to ensure that patients received support during PICU round
closure and also at outpatients would be beneficial. Family
accommodation could be increased and better equipment provided
which ranged from a child sized commode to fans during hot
weather.
Priority areas to address/expand
-
How do we improve communication with families - timing,
location and language in update conversations?
-
How can we ensure we have the right equipment available on the
ward?
-
What support provision should patients on Ward 32 expect from
support services- dietetics, breastfeeding, play etc?
-
How can we improve the mechanism around cancellations,
particularly around communication and rebooking?
-
What can be done to provide more supportive parent facilities
for those experiencing longer stays?
-
How can we better help parents manage the different stages of
the surgical pathway?
Information and support
This was a challenging theme as families were very clear on what
they needed to know in retrospect but recognised the challenge of
identifying this earlier. The detail and timing of
information needed to be individualised as families had different
needs at different times but needed to be led by the clinical
team. Information needed to be provided in a way that allowed
time and space to take the
information in and also opportunities to ask questions about the
content and any concerns it might raise.
Information and support for teenagers was raised as a specific
need with discussions around how young people could access this
information with or without parent involvement. This needs to
be kept up to date and delivered in a young person friendly way
which might include web based apps or engagement with social
media. Young people on the ward may have different needs to
children and services should be available to meet these
needs. This may also apply to young people with cardiac
conditions who may be struggling with school or social situations
and need support in how to talk to their friends and peers about
their condition.
Priority areas to address/expand
-
How will we know who to talk to when we have a question?
-
How can information be provided in a way that ensures they are
easily accessible at the point the need is identified?
-
What support can be made available around information so that
families can easily raise any questions or concerns?
-
What support is available for young people and how do we ensure
that it is easy for them to access?
Discharge and after
Some parents reported good follow up after discharge with
positive communication between the hospital and the local team, and
good community nurse support. Others felt that communication
and planning could be improved. There were instances of the
wrong information being passed to local services and most families
expressed a frustration around delays in providing TTA's, leaving
them either on the ward or waiting in reception for hours until
they arrived. There was reported to be little difference in
being discharged at the weekend or on a weekday.
Discharge between wards was discussed and some parents noted a
difference in atmosphere between PICU and Ward 32, feeling that his
'step-down' needed to be managed in a similar way with clearer
communication between the two teams and with parents.
Parents generally felt that there was a lack of information when
they finally went home which left them feeling vulnerable about
what to do, and who to contact if they were worried. There
was also very little support available in managing their new
situation including help with DLA, benefits etc.
Being sent home after a cancellation was very difficult to
manage without having some idea of when the next appointment would
be. This issue was also picked up under inpatient and
outpatient experiences.
Priority areas to address/expand
-
How can we ensure joined up communication with the whole team
around the child - joint care, community, hospital teams, schools,
GP?
-
How can we better manage step down care to ensure families are
confident in the change in management?
-
What is causing Pharmacy waiting time and how can it be
reduced?
-
How can we limit the risks of incorrect information
sharing?
Conclusion
We had lots of thoughts, comments and practical ideas of things
we could change and ways forward, as well as examples of good
practice which we could embed more strongly within the service. We
also had lots of enthusiasm and some kind offers to help us with
some action points and participation in future events. We
will be developing an action log to run alongside the existing
Transformation work and working with the teams to feed these
comments into the existing workstream to influence progress and
outcomes.
Potential actions:
-
Encourage referring hospitals to provide information in advance
of referral.
-
Liaison team as 'key workers' - having an allocated caseload
and being a point of contact.
-
Review communication pathways with families to establish a
better sense of 'right time, right place' information sharing.
-
Review holistic support and ensure families and staff are clear
on what is available and how to access it.
-
Produce information packs relating to specific scans and tests
in conjunction with external support groups to ensure wide range
availability.
-
Run an event for young people to explore their views to feed
into the process.
-
Reconvene the group in January (prov 20th Jan) to
review actions so far and agree next stages.
Lisa Smith and Vanessa Garratt -
03/09/14
