Consumer and carer experience - of NSW mental health services during the 2020 COVID-19 pandemic - NSW Health
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Consumer and carer experience of NSW mental health services during the 2020 COVID-19 pandemic
Acknowledgments We gratefully acknowledge the support of members of the YES and CES advisory committees and colleagues at BEING, Mental Health Carers NSW, the NSW Ministry of Health Mental Health Branch and the Bureau of Health Information. Many thanks to the NSW Health staff for ensuring people continued to have opportunities to give feedback during COVID-19. Most importantly, thank you to the many consumers and carers who took the time and effort to give feedback about their experience. Report produced by InforMH System Information and Analytics Branch NSW Ministry of Health Published February 2021 Please note that there is the potential for minor revisions of data in this report. Please check with InforMH for any amendments. INFORMH@health.nsw.gov.au SHPN (SIA) 210064 ISBN: 978-1-76081-588-2
Contents
Summary 2
Introduction 4
Metho
d s 5
Limitations and cautions 5
1: Consumer experience of community mental health care 6
COVID-19 impacts on community mental health service delivery 6
Responses to COVID-specific questions 6
Responses to core YES questions 9
What changed most in community experiences? 10
Which groups reported the biggest change in experience in the 12
community?
2: Consumer experience of hospital mental health care 14
COVID-19 impact on hospital mental health service delivery 14
Responses to COVID-specific questions 15
Responses to core YES questions 16
What changed most in hospital experiences? 17
Which groups reported the biggest change in experience in hospital? 19
3: Carer experience of community mental health care 21
COVID-19 impacts on community mental health service delivery 21
Responses to COVID-specific questions 21
Responses to core CES questions 23
4: Carer experience of hospital mental health care 25
COVID-19 impacts on hospital mental health service delivery 25
Responses to COVID-specific questions 25
Responses to core CES questions 27
Appendix 1. Technical information 29
Appendix 2. Your Experience of Service questionnaire 34
Appendix 3. YES domains 38
Appendix 4. Mental Health Carer Experience Survey 39
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 1
Summary
This report uses the Your Experience of Many community consumers reported Many carers reported less contact with
Service (YES) questionnaire and the that services were more flexible,with services throughout COVID-19
Mental Health Carer Experience Survey more frequent contact and better access
to staff Around 61 per cent of carers in the
(CES) to explore consumer and carer
community and 52 per cent of carers in
experiences of NSW mental health
Experience related to family and carer hospital stated that they had less contact
services during the height of the
involvement, access to doctors or with services throughout COVID-19.
COVID-19 restrictions in 2020.
psychiatrists and information about the Despite social distancing restrictions
Supplementary questions about service improved the most. The shift to limiting face-to-face contact, around 19
experience since COVID-19 were added telehealth was also reflected, with many per cent of carers in the community and
to YES and CES consumers in the community reporting 32 per cent of carers in hospital reported
that the convenience of the location that none of their contact with the service
To help understand the impact of
improved. was by phone or online.
COVID-19 on consumer and carer
experience, NSW Health added three Men, Aboriginal and/or Torres Strait How often carers were contacted
additional questions to the YES and CES Islanders and consumers aged 25–64 mattered more than how they were
questionnaires. Consumers and carers
were asked for their views about the years reported more positive contacted
experiences in the community
impacts of COVID-19 on service provision, Where carers had more contact with the
frequency of contact and changes in Male consumers frequently mentioned service during COVID-19 they were more
overall experience. To further explore that home visits, more frequent contact likely to report a more positive experience
any changes in experience, responses to via telehealth and services being more (43% in community and 50% in hospital).
the core YES and CES questions from flexible were the best things about the In hospital settings, almost half of the
the 2020 COVID-19 period were service. Aboriginal and/or Torres Strait carers (46%) who had no change in the
compared with the same time in 2019. Islander consumers rated their access to amount of contact with the service
Free-text responses were also searched peer support, activities that suited them reported a less positive experience. This
for any mention of COVID-19 related terms and staff more positively. For consumers feedback suggests that throughout
such as pandemic, virus, COVID or corona. aged 25–64, flexibility was a common COVID-19, carers needed more contact
theme with people mentioning home than they were previously provided in
In community mental health care, the visits and quick and convenient access to order to remain connected and involved
amount of contact with the service had a services via email and phone. in their loved one’s care.
larger impact than the mode of contact
For carers in the community, regular
Hospital consumers reported diverse
Much discussion of community-based communication and being involved had a
experiences during COVID-19
health care has focused on the impact of big impact on carer experience
Of the consumers who responded to the
delivering care by phone or video. The
COVID-specific questions, 34 per cent Some carers commented that regular
responses to the COVID-specific questions
reported a more positive experience and updates were especially helpful during
suggest that the amount of care might be
26 per cent had a less positive COVID-19, as it provided reassurance and
more important than the method. When
experience. This emphasises that kept them involved in the care of their
consumers reported that they had more
COVID-19 may have had diverse impacts family member, partner or friend. Carer
service contact during COVID, 60 per cent
on consumers of hospital services. Overall experience was varied throughout this
reported that the experience of care was
experience did not change significantly time, but the benefit of regular
more positive, and only 9 per cent reported
during COVID-19 when compared with communication and involvement was a
that care was less positive. By contrast,
the same period in 2019. Consumers common theme.
when consumers reported that their
reported less opportunities for family and
contact had reduced during COVID, more
carer involvement and less activities in Visiting restrictions had a big impact on
than a third (34%) reported a less positive
hospital. carer experience of hospital services
experience.
Younger people in hospital have been Most of the free-text comments that
Early in the pandemic, consumer more impacted by COVID-19 than other related to COVID-19 mentioned visiting
experience in the community was more age groups restrictions. Many carers commented that
positive compared to the same period in this was one of the most difficult aspects
2019 Although not statistically significant, the of COVID-19. Although many carers
largest decline in reported experience in commented that they understood the
There is no evidence that consumer hospital was for people aged less than 18 need for these restrictions, carers felt less
experience worsened during COVID-19 years. On average, 64 per cent rated their connected with their loved one and
and some evidence that aspects of care experience as excellent or very good from reported fewer opportunities to be
were better when compared to the same April to June 2020. This was a drop of 11 involved.
time last year. This is consistent with the per cent from the same period in 2019.
responses to the COVID-specific questions Young people in hospital frequently
which found that slightly more people mentioned that their experience would
reported their experience was more have been better if there was more leave,
positive (27%) rather than less positive fewer restrictions on visitors and more
(17%). activities and social interaction.
2
What changed in services?
In the first 2 months of COVID-19 in NSW there was a decrease in
Emergency department Community clients Hospital admissions
presentations
50%
The proportion of 50%
community mental health 40%
care provided by 30%
20%
telehealth more than 20%
doubled from 10%
March to April 2020 0%
1
4
7
10
13
16
19
22
25
28
31
34
m
m
m
m
m
m
m
m
m
m
m
m
Ite
Ite
Ite
Ite
Ite
Ite
Ite
Ite
Ite
Ite
Ite
Ite
What did people say about their experience?
Community Hospital
Consumer experience was more positive Consumer experience in hospital
compared to 2019 didn't change significantly
Experience Men Experience was less positive for young consumers
improved (less than 18 years)
Aboriginal consumers
most for
They said there...
Consumers aged 25–64 years
was less leave
There was... Increased flexibility
were fewer visitors
Better access to staff
were fewer activities
More frequent contact via
was less social interaction
telehealth
More contact with the service = more
Carer experience was varied
positive carer experience
Most carers reported less contact with services Visiting restrictions affected carer experience
in hospital settings
Regular communication had the biggest impact
on carer experience of services Carers needed more frequent contact during the
COVID-19 restrictions to remain connected
and involved
Introduction
This report examines how consumers’ and carers’ experience of NSW mental
health services changed during the early staged of the COVID-19 pandemic.
COVID-19 (SARS-CoV-2) was declared NSW Mental Health services have There is currently very little evidence
a pandemic by the World Health experienced similar changes. about the impact of COVID-19 on
Organization in March 2020. The Emergency contacts, community consumer experiences of health care.
pandemic has had a major impact on referrals and hospital admissions Research has primarily focused on the
individuals, on community social and reduced substantially during the first 2 provision of telehealth in general health
economic wellbeing, and on the months of the pandemic. The settings. Devin et al. (2020) found that
delivery of health care services. At this proportion of community mental health patient satisfaction ratings did not
stage, Australia has been fortunate in care delivered by phone or video more change despite a rapid shift towards
not experiencing high rates of than doubled from March to April 2020, telemedicine and providers being
2
community infection, hospitalisation or to nearly 50 per cent of total inexperienced with virtual care.
death in comparison to some other community care hours. Mental health
countries. However, the pandemic has admissions reduced, and inpatient units Locke et al. (2020) found that most
still had a significant effect on introduced changes aimed at participants assessed telephone
Australian health services, including protecting units from the introduction appointments positively, however they
mental health services. of COVID-19, including reducing day found that people had diverse
leave and access by visitors experiences, with some preferring face-
Health systems throughout Australia to-face and others preferring telephone
have experienced two related trends in It is important to understand how these appointments. The distance required to
response to COVID: (i) a short-term service changes affected people’s travel for face-to-face appointments
reduction in demand in the first three experience of mental health care. Some impacted people’s preference, with
months of the pandemic and (ii) a rapid of these service changes may have telephone appointments being
shift towards telehealth and virtual improved the experience of care, for preferred by people who had a longer
health care. During the early stages of example making it more accessible or distance to travel. 3
the pandemic, NSW Health convenient. However, some changes
implemented many strategies to reduce have the potential to make people feel Only one published study has examined
the risk of acquiring or spreading less connected, safe or empowered. consumer views in an Australian mental
COVID-19, and to prepare emergency Individuals are likely to have health setting. Kavoor and colleagues
4
care capacity in case of rapidly experienced these changes differently, surveyed consumers in a regional
increasing need. Help-seeking may also so it is also important to assess how the public acute mental health setting. They
have changed at that time, with some experience of care has changed for found in the context of concerns about
people being less likely to seek care for different groups of consumers and COVID-19, that consumers preferred
non-urgent conditions. Together these carers. telephone consultations over
contributed to substantial reductions face-to- face contact.
across the spectrum of health care in
NSW, including primary care contacts,
cancer screening, ambulance callouts,
emergency department presentations,
emergency hospital admissions and
planned surgery.1
1 Sutherland K, Chessman J, Zhao J, Sara G, Shetty A, Smith S, Went A, Dyson S, Levesque J-F (2020). Impact of COVID-19 on healthcare activity in
NSW, Australia. Public Health Research & Practice 30(4);3042030. DOI: 10.17061/phrp304030
2 Mann DM, Chen, J, Chunara R, Testa PA, Nov O (2020). COVID-19 transforms health care through telemedicine: evidence from the field. Journal of
the American Medical Informatics Association, 27(7): 1132–5. https://doi.org/10.1093/jamia/ocaa072
3 Locke J, Herschorn S, Neu S, et al. (2020) Patients’ perspective of telephone visits during the COVID-19 pandemic, Canadian Urological Association
Journal, 14(9), E402–6. http://dx.doi.org/10.5489/cuaj.6758
4 Kavoor AR, Chakravarthy K. and John T (2020). Remote consultations in the era of COVID-19 pandemic: preliminary experience in a regional
Australian public acute mental health care setting. Asian Journal of Psychiatry, 51, 102074. https://doi.org/10.1016/j.ajp.2020.102074
4
Methods The supplementary questions added to Limitations and cautions
the YES and CES questionnaires were: Before exploring the findings, it is
important to acknowledge the
NSW Health has established a process How much of your care/contact with
following cautions. The supplementary
of continuous collection and monthly this service was by phone or online
COVID specific questions have not been
reporting of consumer and carer (e.g. videoconferencing such as Skype/
psychometrically validated. In order to
experience. Each month around 2,000 Pexip)?
obtain feedback quickly throughout the
YES questionnaires are returned from COVID-19 period, these questions were
both inpatient and community mental How has COVID-19 changed the amount
temporarily added to questionnaires.
health services. These provide of contact you have had with the
The following groups provided
feedback from a large and reasonably mental health service (including face to
feedback on the questions prior to
representative group of NSW service face and phone/online)?
release; the YES and CES advisory
consumers, including good rates of committees, Being, Mental Health
return from all ages and genders, How has your experience of care with
Carers NSW and the Official Visitors
Aboriginal and/or Torres Strait Islander this service changed during COVID-19?
Program.
consumers, and people receiving both
voluntary and involuntary care (Your See Appendix 1 for a list of response Some groups may be under
Experience of Service. What options to these questions. The represented, and a selection bias may
consumers say about NSW Mental COVID-specific questions were made be present for those who completed
5
Health Services 2019–2020, p7). available in April 2020, so data is not the COVID-specific questions. For
available for questionnaires returned example, those who had better access
The CES has been implemented more in the early weeks of the pandemic to the online questionnaires were able
recently in NSW to gather feedback (March–April 2020). COVID-specific to more easily complete the COVID-
about carers’ experiences of care. For questions were first added to online specific questions. See Appendix 1 for
information about the development YES and CES tools, then included as a details of which consumers completed
and validation of these tools see separate page offered along with the the COVID-specific questions. The
Appendix 1. Both YES and CES can paper questionnaires. COVID-specific questions were better
be used to compare experience during able to capture the impacts of
the 2020 COVID-19 period with In addition to exploring the COVID-
COVID-19 for people who had previous
experience at the same time in 2019. specific questions and change across
care or contact with the service. Some
the core questions, free-text responses
changes across questions and different
were searched for any mention of
If YES and CES results changed in 2019 groups of consumers or carers are small
COVID-19 related terms such as
and 2020, how do we know whether and may arise due to chance variation
pandemic, virus, COVID or corona.
those changes were due to COVID-19 rather than a true impact of COVID-19.
These were then grouped into themes
and associated service changes? The depending on their content. The CES was implemented in NSW
most reliable method may be to ask public mental health services in July
the consumer or carer themselves for 2018. As the CES is at a much earlier
The findings in this report are based on
their view of what has changed. stage in its use in NSW compared to
the number of questionnaires shown in
Therefore, NSW Health added three YES, we must be cautious when
Table 1.
supplementary questions to YES and interpreting the feedback. Due to the
CES questionnaires, asking consumers low number of carer surveys returned
and carers for their views about the in early 2019, a meaningful comparison
impacts of COVID-19 on service with 2020 data is difficult and any
provision, frequency of contact and changes are unlikely to reflect the true
changes in overall experience. impacts of the pandemic.
Thematic analysis of the free-text
comments occurred manually and did
not utilise qualitative analysis software.
Table 1. Number of YES and CES questionnaires returned
Questionnaire Questionnaires Questionnaires Supplementary questions
January–September 2019 January–September 2020 May–September 2020
CONSUMER EXPERIENCE (YES)
Community 5,687 4,482 829
Hospital 12,460 12,431 261
Total 18,147 16,913 1090
CARER EXPERIENCE (CES)
Community 515 1,090 188
Hospital 799 1,221 68
Total 1,314 2,311 256
5
https://www.health.nsw.gov.au/mentalhealth/participation/Pages/partners.aspx
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 5
1: Consumer experience of
community mental health care
COVID-19 impact on community mental health
service delivery
NSW community mental health care changed rapidly during the first months of
the COVID-19 pandemic (March–April 2020). There was a brief but substantial
reduction in the amount of community care provided. From early March to
mid-April 2020 the number of new community mental health clients seen each
week dropped by 48 per cent and the number of clinical care hours provided
reduced by 36 per cent. By late May, these figures had returned to pre-
COVID-19 levels and since then have either remained at or exceeded the 2019
baseline.
A more lasting change has been a rapid shift to telehealth. The proportion of
clinical care hours provided by telehealth increased from around 20 per cent to
50 per cent in the final two weeks of March 2020. This proportion has reduced
gradually, but remains well above 2019 levels.
Figure 1. Proportion of community hours provided by phone or telehealth
60%
50%
40%
30%
20%
10%
2020
0% 2019
Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
Responses to COVID-specific questions
There were 829 responses to YES COVID-specific questions in the community
from May to September 2020. Most of these were completed online (93%).
A broad range of consumers responded to the COVID-specific questions. This
range was similar to the consumers who completed full YES questionnaires. My experience would
While we do not yet know which consumers accessed services throughout this have been better if...
period, we do know that in the past YES returns have been broadly I prefer face-to-face
representative of consumers accessing services. contact. However
considering we are in a
time of isolation because
People with brief contact with services (less than 24 hours) are typically under of COVID-19 there isn’t
represented. The COVID-specific questions were consistent with this. Older much that can be done
consumers (65+ years) were also slightly under represented in responding to
these questions. This group also utilised the online questionnaire less
throughout this period compared with other age groups.
6
More than one-third of community
consumers reported less contact with
services during COVID-19
Disruptions to services might be The substantial shift to telepsychiatry
expected to result in less care for many was reflected in the responses: over
consumers. However, responses to the three quarters of consumers reported
YES COVID questions suggest that that some or all of their care was
people’s experience was more diverse provided by phone or online. More
than this. More than one-third (38%) of than half of consumers reported that
respondents reported a reduction in their experience of care had not
the amount of contact with services, changed during COVID-19. However,
however 20 per cent reported an some people (27%) reported that
increase. The remainder (40%) their experience was more positive,
reported no change in the amount of and slightly fewer (17%) reported that
care. their experience was less positive.
2
Figure 2. Responses to supplementary COVID questions, community consumers
None Little/some Most/all
Care provided phone/online 22% 57% 21%
Less contact No change More contact
Amount of contact with service 38% 40% 22%
Less positive No change More positive
Change in experience 17% 55% 27%
The amount of contact with the service By contrast, when consumers reported
had the most impact on consumer that their contact had reduced during
experience COVID-19, more than a third (34%)
reported a less positive experience.
Much discussion of community-based
Interestingly, even when care reduced
health care has focused on the impact
in quantity, around 18 per cent of
of delivering care by phone or online.
consumers reported a more positive
The responses to the YES-COVID
The best things about experience. This may be for several
questions suggest that the amount of
this service were... reasons. For example, the amount of
care might be more important than the
My case manager came to care provided may have been more
method. When consumers reported
see me during the appropriate for the consumers’ needs,
that they had had more service contact
COVID-19 restrictions. or the care provided more effective or
Thank you! during COVID-19, the majority (60%)
meaningful to the consumer, despite
reported that their experience of care
the reduction in its frequency.
was more positive, while only 9 per
cent reported that care was less
positive.
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 7Figure 3. How the frequency of contact impacted overall experience, community consumers
How has your experience of care with this service changed during COVID-19?
Less contact 34% 49% 18%
How has
COVID-19
changed
the amount No change 8% 76% 16%
of contact
you had with
the service?
More contact 9% 31% 60%
Less positive No change More positive
Receiving more care by phone or video was polarising: both positive and negative experiences were reported
It appeared that the more care that was Some of these differences may be Many consumers expressed a
provided by phone or video, the more due to differences in the quantity of preference for face-to-face contact
polarised respondents were in their care. For example, if telehealth where this was available, and many
view of its impact on their experience allowed more frequent contact this commented that although this was not
of care. Of consumers receiving most or may have contributed to a more always in the services’ control it still
all of their care by telehealth, many positive experience. When exploring had an impact on their experience.
(45%) reported that this change the free-text comments, people’s
improved their experience, while 20 per responses were influenced by many
cent reported a less positive overall considerations.
experience.
Figure 4. How the method of contact impacted overall experience, community consumers
How has your experience of care with this service changed during COVID-19?
No care 13% 69% 18%
How much
of your care
with this
service was Little/some 18% 57% 25%
by phone or
online?
Most/all 20% 35% 45%
Less positive No change More positive
8Responses to core YES questions
Next we examined responses to the Early in the pandemic, overall experience in the community was
core YES questions, comparing more positive compared to the same period in 2019
January to September 2019 (see
figure 5) with the same period in
From April to June 2020 slightly more Our strong conclusion is that there is no
2020. This allows comparison of a
consumers reported an excellent or evidence that consumer experience
larger number of questionnaires.
very good overall experience compared worsened during COVID-19 and some
From April to June 2020, 1,153 YES
with the same time in 2019. It is evidence that aspects of care were
questionnaires were returned from
important to note that there was also a better when compared to the same
community services. This was a drop
decrease in the percentage of time in 2019. This is consistent with the
of 50 per cent from the same period
consumers reporting an excellent or responses to the COVID-specific
in 2019 (2,279 YES questionnaires
very good experience in April 2019. A questions which found that slightly
returned April–June 2019).
specific cause was not identified for this more people reported their experience
drop and it is possibly the result of was more positive rather than less
To test whether changes from 2019 to
chance variation. positive.
2020 may have been caused by a
different mix of consumers, we
The April to June 2020 period marks
calculated the proportion of YES
the height of COVID-19 restrictions in
responses from different groups and
NSW. It is also important to note that in
compared this over the two time
April 2020 the amount of community
periods (see Appendix 1). In 2020
care provided by phone or telehealth
there was a small decrease in the
increased to around 50 per cent.
proportion of responses from people
aged Under 18 years and consumers
who had brief contact with the service
(less than 24 hours). Otherwise, the
proportion of responses across groups
remained similar to the previous year.
Figure 5. Percentage of consumers reporting an excellent or very good experience in the community
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
2020
2019
0%
Jan Feb Mar Apr May Jun Jul Aug Sep
Comparisons will focus on the April–June period
Comparisons of different time periods were explored to help understand the
impacts of COVID-19 on consumers’ experience. As the largest changes were
noted during the height of the COVID-19 restrictions in NSW (April–June 2020)
this period will be focused on in this report and compared to the same period
in 2019.
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 9What changed most in community
experiences?
To help understand the possible causes for the Opportunities for family and carer involvement
change in overall experience, responses to each of improved (Q10, Q17)
the YES questions were compared with the same
YES questions related to the involvement of family
period in 2019.
members and carers were rated better throughout
Figure 6 on page 11 shows the average rating of each the first few months of COVID-19 compared to the
same period in 2019. When consumers mentioned
YES question throughout the first three quarters of
‘family’ in the free text comments throughout this
the year. Interestingly, during the January to March
period they often said the best thing about the
quarter, most questions were rated less positively
service was that it supported the whole family and
compared to 2019.
staff were caring towards family members.
However in April to June this reversed, and all
questions (except for Q17 (You had opportunities for Consumers reported better access to their doctor or
your family and carers to be involved in your psychiatrist (Q8)
treatment and care if you wanted) and Q23 (The In the free-text comments, many people mentioned
effect the service had on your hopefulness for the that the best thing about the service throughout this
future) were rated significantly more positively than time was access to their doctor or psychiatrist when
in 2019. needed. Consumers specifically mentioned the
availability of frequent telehealth appointments and
Following the easing of restrictions, we then see a follow ups with doctors as well as home visits.
return to baseline rating levels in the July to
September quarter with very little difference between
the 2019 and 2020 ratings. During the April to June More consumers recalled being provided
quarter the following changes were highlighted: information about the service (Q18)
Throughout the COVID-19 pandemic in 2020, services
have needed to trial different ways of providing
information to consumers. Despite reports that some
services removed paper resources and materials for
infection control reasons, there was an increase in the
number of consumers who recalled receiving
information about the service. This may suggest that
services were able to find other ways to provide
information throughout this period to meet the needs
of consumers.
The convenience of the location (Q22) improved
Throughout this period a higher proportion of
community support was provided via phone or
telehealth and may explain the improved experience
reported by respondents to Q22. In the free-text
comments many consumers also mentioned the
greater availability of home visits as having a positive
impact on their experience.
10Figure 6. Average rating of YES questions in the community comparing 2019 to 2020
January to March April to June July to September
Q1 You felt welcome at this service
Q1
Q2
Q2 Staff showed respect for how you were feeling
Q3 You felt safe using this service Q3
Q4 Your privacy was respected Q4
Q5 Staff showed hopefulness for your future Q5
Q6 Your individuality and values were respected Q6
Q7 Staff made an effort to see you when you wanted Q7
Q8 You had access to your treating doctor or psychiatrist when you needed Q8
Q9 You believe that you would receive fair treatment if you made a complaint Q9
Q10 Your opinions about the involvement of family or friends in your care were Q10
respected
Q11 The facilities and environment met your needs Q11
Q12 You were listened to in all aspects of your care and treatment Q12
Q13 Staff worked as a team in your care and treatment Q13
Q14 Staff discussed the effects of your medication and other treatments with Q14
you
Q15 You had opportunities to discuss your progress with the staff caring for you Q15
Q16 There were activities you could do that suited you Q16
Q17 You had opportunities for your family and carers to be involved in your Q17
treatment and care if you wanted
Q18 Information given to you about this service Q18
Q19 Explanation of your rights and responsibilities Q19
Q20 Access to peer support Q20
Q21 Development of a care plan with you that considered all of your needs Q21
Q22 Convenience of the location for you Q22
Q23 The effect the service had on your hopefulness for the future Q23
Q24 The effect the service had on your ability to manage your day to day life Q24
Q25 The effect the service had on your overall well-being Q25
Q26 Overall, how would you rate your experience of care with this service in the Q26
last 3 months? 2019 2020Which groups reported the biggest change in experience in
the community?
After understanding what has changed, the next step The experience of Aboriginal and/or Torres Strait
was to understand whose experience was impacted Islander consumers significantly improved
most by COVID-19 and why. The YES questionnaire
In April–June the proportion of Aboriginal and/or
includes several demographic questions where
Torres Strait Islander consumers reporting an
consumers can provide information about themselves
excellent experience increased from 61 per cent in
and the care they were received while remaining
2019 to 73 per cent in 2020 (12% increase). The
anonymous.
largest changes were in the Making a difference
domain (20% increase in excellent or very good).
To understand whose experience changed most we
used these demographic questions and looked at the
Aboriginal and/or Torres Strait Islander consumers
percentage of consumers reporting an excellent or
reported the largest improvements in their access to
very good experience. This was then compared to the
peer support (Q20) and activities that suited them
same period in 2019 as shown in Figure 7.
(Q16). The accessibility of staff also improved with
improved ratings for Q7 (Staff made an effort to see
Testing of significant differences was conducted
you when you wanted) and Q8 (You had access to
using 95 per cent confidence intervals. Differences
your treating doctor or psychiatrist when you
were assessed as statistically significant where the 95
needed).
per cent confidence intervals for proportions did not
overlap. YES questions are grouped into domains
depending on what the measure (see Appendix 3).
Consumers aged 25–64 years reported a significant
Where a group had a significant change in
improvement
experience, we then explored the domains, individual
questions and free-text responses to understand
possible causes for this change. On average, 9 per cent more consumers between
25–64 years reported an excellent or very good
experience during the COVID-19 period in 2020. The
largest increases were in the domains of Individuality
Males in the community reported improvements and Participation (9% increase).
across all YES questions
In the free-text comments, many people listed
Around 15 per cent more male consumers rated their convenience and flexibility of access to services as
experience as excellent or very good in April to June things that made their experience better. Home visits
2020 compared with the same period in 2019. This is were mentioned frequently, as was quick and
the largest increase of any group. Male consumers convenient access to services via email and phone.
reported improvement across all YES questions with As those aged 25 to 64 represent the majority of the
the largest increase in the Participation and workforce this could suggest that convenience and
Individuality domains (14% increase). flexibility are particularly important to consumers who
are employed.
Using the free-text comments, it appeared that many
men preferred the flexibility of home visits, and that
access to telehealth meant they could have more
frequent contact with services. Men also reported
that services were more flexible and there was
greater opportunity for family and carer involvement.
My experience would
have been better if...
It was difficult seeing the
psychiatrist via video due to
COVID-19. Having in person
appointments would have
been better
12Figure 7. Percentage of consumers who rated their overall experience as
excellent or very good in the community from April to June
Gender
Female
Male
Aboriginal and/or Torres Strait Islander
Aboriginal
Not Aboriginal
Age group (years)
Under 18
18–24
25–64
65 and over
Duration of contact
Less than 24hrs
1 day–2 weeks
3–4 weeks
1–3 months
4–6 months
More than 6 months
Legal status
Voluntary
Involuntary The best things about
this service were...
Great follow up by my case
manager and peer support
2019 2020 worker. They’ve been really
supportive during the
corona virus
*Statistically significant difference.
Testing of significant differences was conducted using 95 per cent confidence
intervals. For more information please see Appendix 1.
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 132: Consumer experience of
hospital mental health care
COVID-19 impact on hospital mental health
service delivery
From late March 2020, changes were seen in the demand for hospital mental
health services and how they were provided. Over a one-month period from late
March to late April, admissions to acute units dropped (15%) and the number of
people occupying mental health beds decreased (14%) (see Figure 8).
To prevent the introduction or spread of COVID-19, restrictions were placed on
visitors and across many Local Health Districts and Specialty Health Networks,
limitations were placed on consumers being able to leave the hospital. With
these restrictions there were less opportunities for consumers to participate in
groups, activities and social interaction.
Figure 8. Weekly average of occupied mental health beds in 2020 compared to 2019
2,500
2,400
2,300
2,200
2,100
2,000
1,900
1,800
Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2020
2019
My experience would
have been better if...
A full explanation of all
services, rules and activities
on day one. COVID didn’t
help but that’s no ones fault
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 14Responses to COVID-specific questions
There were 262 responses to YES There were a range of experiences in The COVID-specific questions related
COVID-specific questions in hospital hospital during COVID-19 to the amount of care provided online
services from May to September and consumers’ contact with the
2020. Of these around 63 per cent Of the consumers who responded to service, so were less applicable for
were completed online. A broad the COVID-specific questions, 34 per hospital consumers. Therefore, to
range of consumers responded to cent reported a more positive understand why some consumers had
the COVID-specific questions. experience and 26 per cent had a a more or less positive experience in
Aboriginal and/or Torres Strait less positive experience. This hospital we focused on feedback from
Islander consumers and people with emphasises that COVID-19 may have the core YES questionnaire and free-
brief contact (less than 24 hours) had diverse impacts on consumers of text comments.
were slightly under represented. hospital services.
Figure 9. How has your experience of care with this service changed during COVID-19, hospital consumers
Change in
experience 26% 40% 34%
Less positive No change More positive
The best things about
this service were...
Health, safety and hygiene.
Everyone followed the
COVID-19 rules
15Responses to core YES questions
Overall experience in hospital has
not changed significantly during
COVID-19
In April 2020, there was a slight To align with the analysis of community
decrease in the proportion of mental health services and explore the
consumers reporting an excellent or possible changes in hospital experience,
very good experience. Otherwise, the April to June 2020 was compared with
overall experience each month has the same period in 2019.There were
remained similar to that of 2019. 3,308 YES questionnaires returned from
April to June 2020 and 4,199 for the
The decline in reported experience in same period in 2019.
April 2020 was not the result of a drop
in returns (1,181 returns in April 2019,
1,240 returns in April 2020) or a
different mix of consumers. The
proportion of consumers responding
was compared across the two time
periods and is available in Appendix 1.
Figure 10. Percentage of consumers reporting an excellent or very good experience in hospital
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
2020
0% 2019
Jan Feb Mar Apr May Jun Jul Aug Sep
My experience would The best things about
have been better if... this service were...
There was a video chat The true compassion of all
system for personal the staff (especially during
connection during this time of strain on the
COVID-19 hospital sector to assist with
COVID-19)
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 16What changed most in hospital experiences? Although overall experience did not change significantly during COVID-19 it is still important to explore if any particular areas of experience were impacted. Figure 11 shows the average rating of each YES question throughout the first three quarters of the year and compared this to the same period in 2019. This highlights that there was very little change when comparing 2019 to 2020 across all three quarters. There were fewer opportunities for family and carers to be involved Within the April–June quarter, there were two questions that stood out has having a less positive experience. While differences were small, questions related to the involvement of family and carers (Q10, Q17) were rated slightly lower than in 2019. In the free-text comments, consumers frequently mentioned that their experience would have been better if their family members were able to visit more and if communication between staff and family was clearer and more consistent. There were fewer activities for consumers to engage in Consumers rated Q16 (There were activities you could do that suited you) lower than in 2019. In the free-text comments, consumers stated that COVID-19 impacted on their freedom, ability to leave or have visitors and opportunities to participate in activities. Prior to COVID-19 people would often state that the best thing about the service was the range of activities available and opportunities to engage with other consumers and staff socially.
Figure 11. Average rating of YES questions in hospital comparing 2019 to 2020
January to March April to June July to September
Q1 You felt welcome at this service Q1
Q2 Staff showed respect for how you were feeling Q2
Q3 You felt safe using this service Q3
Q4 Your privacy was respected Q4
Q5 Staff showed hopefulness for your future Q5
Q6 Your individuality and values were respected Q6
Q7 Staff made an effort to see you when you wanted Q7
Q8 You had access to your treating doctor or psychiatrist when you needed Q8
Q9 You believe that you would receive fair treatment if you made a complaint Q9
Q10 Your opinions about the involvement of family or friends in your care were Q10
respected
Q11 The facilities and environment met your needs Q11
Q12 You were listened to in all aspects of your care and treatment Q12
Q13 Staff worked as a team in your care and treatment Q13
Q14 Staff discussed the effects of your medication and other treatments with Q14
you
Q15 You had opportunities to discuss your progress with the staff caring for you Q15
Q16 There were activities you could do that suited you Q16
Q17 You had opportunities for your family and carers to be involved in your Q17
treatment and care if you wanted
Q18 Information given to you about this service Q18
Q19 Explanation of your rights and responsibilities Q19
Q20 Access to peer support Q20
Q21 Development of a care plan with you that considered all of your needs Q21
Q22 Convenience of the location for you Q22
Q23 The effect the service had on your hopefulness for the future Q23
Q24 The effect the service had on your ability to manage your day to day life Q24
Q25 The effect the service had on your overall well-being Q25
Q26 Overall, how would you rate your experience of care with this service in the Q26
last 3 months? 2019 2020Which groups reported the biggest change in experience
in hospital?
While overall experience for all hospital consumers People under 18 years old in hospital have been
did not change significantly during COVID-19, it is more impacted by COVID-19 than other age groups
important to know whether some groups of
How young people accessed services changed
consumers reported a better or worse experience.
throughout this period. From April 2020 there was an
increase in the number of young people presenting to
To test for change we looked at the percentage of
emergency departments for mental health and
consumers reporting an excellent or very good
self-harm or suicidal ideation. This upward trend has
experience from April to June 2020 and compared
continued throughout the remainder of 2020 and is
this to the same period in 2019 (see Figure 12).
greater than any other age group. There was an
increase in the number of acute admissions for young
In hospital settings there were no statistically
people which has also continued to increase
significant changes for different groups of
throughout the second half of 2020.
consumers. Differences were assessed as statistically
significant where the 95 per cent confidence
On average, 64 per cent of people aged less than 18
intervals for proportions did not overlap. Whether a
years reported their experience as excellent or very
difference is significant is influenced by the average
good from April to June 2020. This was a drop of 11
score and the number of responses.
per cent from the same period in 2019. Throughout
COVID-19, young people have accessed mental
health services more than ever before. However, due
to restrictions put in place to protect consumers from
the virus, many of the things young people find most
positive about services have been limited.
In the free-text comments, young people often
mentioned that their experience would have been
better if there was more leave, activities and social
interaction. Prior to COVID-19, young people would
often comment that the best thing about the service
was making friends and participating in groups and
activities.
The best things about My experience would
this service were... have been better if...
The staff are amazing and COVID-19 wasn’t happening
do their best within the i.e. Group work, talking,
COVID guidelines socialising, walking, physical
activities
19Figure 12. Percentage of consumers who rated their overall experience as
excellent or very good in hospital from April to June
Gender
Female
Male
Aboriginal and/or Torres Strait Islander
Aboriginal
Not Aboriginal
Age group (years)
Under 18
18–24
25–64
65 and over
Duration of contact
Less than 24hrs
1 day–2 weeks
3–4 weeks
1–3 months
4–6 months
More than 6 months
Legal status
Voluntary
Involuntary
The best things about
this service were...
2019 2020
The staff. Isolation and
protection during the corona
virus
*Statistically significant difference.
Testing of significant differences was conducted using 95 per cent confidence
intervals. For more information please see Appendix 1.
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 203: Carer experience of
community mental health care
COVID-19 impacts on For this reason, this section will focus returns were from Aboriginal and/or
primarily on the COVID-specific CES Torres Strait Islander carers. Overall,
community mental health questions and the free-text responses. most people reported that they were
service delivery Using this method, we can be confident caring for their child (64%) or spouse
that the carer experiences reflected are (14%) and had been engaged with the
Earlier in this report we explored some related to COVID-19 and not the result service for over one month (93%).
of the changes that occurred in of change in survey returns or a While this tells us that a range of carers
community mental health services as a different mix of carers. are providing feedback, it is not known
result of COVID-19 (page 6). While the if this is a representative sample of the
data available can provide some insight Responses to carers of people accessing mental
into how consumers accessed services COVID-specific questions health services.
throughout this time, it is less clear how
COVID-19 impacted family members There were 191 responses to the CES More than half of carers had less
and carers. The CES survey provides a COVID-specific questions in the contact with the service
perspective that is often missing in community from May to September
other data sources and can help provide 2020. Of these, most were completed As with consumers, we might expect
some information about carer online (84%) and can be linked to full that disruptions to services may have
experience during COVID-19. The full CES surveys. Although we do not have resulted in carers having less contact
text of the CES is in Appendix 4. accurate data about the family with services. In the community, 61 per
members and carers of people cent of carers stated that they had less
The CES was implemented in NSW accessing community mental health contact with services throughout
public mental health services in July services, the CES can provide some COVID-19 (see Figure 13). Around 19
2018. As the CES is at a much earlier insight into which carers are providing per cent of carers continued with only
stage in its use in NSW compared to feedback. face-to-face contact in the community
YES, we must be cautious when whereas over 80 per cent reported that
interpreting the feedback. More feedback was received from between a little and all of their contact
female carers (73%), people aged 35 to was by phone or online. While many
Due to the low number of carer surveys 74 years (90%) and people who have carers reported a change in how much
returned in early 2019, a meaningful been caring for over 10 years (37%). contact and the method of contact
comparison with 2020 data is difficult, Despite 10 per cent of consumers in the with the service, 68 per cent reported
and any changes are unlikely to reflect community identifying as Aboriginal no change in their overall experience as
the true impacts of the pandemic. and/or Torres Strait Islander people, a result of COVID-19. Where carer
only 3 per cent of CES COVID-specific experience did change, it was more
likely to be less positive (18%).
Figure 13. Responses to supplementary COVID questions, community carers
None Little/some Most/all
Care provided phone/online 19% 57% 24%
More
Less contact No change contact
Amount of contact with service 61% 25% 14%
More
Less positive No change
positive
Change in experience
18% 68% 14%
21Figure 14. How the frequency of contact impacted overall carer experience, community carers
How has your experience of care with this service changed during COVID-19?
Less contact 28% 67% 5%
How has
COVID-19
changed
the amount No change 6% 76% 18%
of contact
you had with
the service?
More contact 57% 43%
Less positive No change More positive
The more contact with the service, the With many people reporting increased How often carers were contacted
more positive the carer’s experience feelings of social isolation throughout mattered more than how they were
Where carers had more contact with COVID-19, it is possible that contact contacted
the service during COVID-19 they were with services may have been more The method with which services connect
more likely to report a more positive impactful for carers, even where there with carers (face-to-face, phone or
experience (43%) compared to those was a reduction in the amount of online) did not significantly impact the
who had less contact or no change contact. In the free-text comments, carers experience of the service. Figure
(see Figure 14). There were no carers many carers mentioned that the best 15 shows that carers who had a little or
who reported a less positive thing about the service was the regular some of their carer provided by phone
experience where there was increased contact and feeling informed and or online were slightly more likely to
contact. For those carers who had less involved in the care of their family state that their experience was less
contact with the services, 28 per cent member, partner or friend. positive. Otherwise, there were similar
stated that their experience was less experiences for carers who had contact
positive. Interestingly, where there with the service either face-to-face only,
was no change in the amount of phone or online, or both. Again, this
contact around 18 per cent of carers suggests that the amount of contact with
reported a more positive experience. the service had a larger impact on carer
experience then the method of contact.
Figure 15. How the frequency of contact impacted overall carer experience
How has your experience of care with this service changed during COVID-19?
No care 14% 68% 18%
How much
of your care
with this
service was Little/Some 22% 68% 10%
by phone or
online?
Most/All 13% 68% 19%
Less positive No change More positive
22Responses to core CES questions
Next, we examined responses to the Overall carer experience was less
core CES questions, comparing January positive during early stages of the
to September 2019 with the same pandemic
period in 2020. Throughout 2020 there
have been significant increases in the Figure 16 shows that from April to June
number of CES surveys completed. 2020 there was a decrease in the
From April to June 2020, 235 CES percentage of carers reporting an
surveys were returned from community excellent or very good overall
services. This was an increase of 35 per experience. Most of this drop occurred
cent from the same period in 2019 (175 in June and continued into the later
CES surveys returned April–June 2019). months of the year.
Between July and September 2020, the While it is difficult to compare with the
number of returns more than doubled previous year, we can see that until
from 2019 (219 returns from July to April 2020 experience was improving
September 2019, 578 returns from July and from May to September 2020
to September 2020). Although this there was a downward trend.
increase in returns is positive, it makes
it difficult to compare experience The free-text comments were used to
across the two years. further explore what impacted carer
experience throughout COVID-19. This
is outlined in the next section.
Figure 16. Percentage of carers reporting an excellent or very good experience in the community
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Jan Feb Mar Apr May Jun Jul Aug Sep
2020
2019
23COVID-19 was mentioned by community carers in the free text
The best things about
comments
this service were...
The CES offers carers the option to provide additional information The services ability
about their experience using two free-text questions: to adapt to changes
being implemented
Q30. My experience with this service would have been better if... due to COVID
Q31. The best things about this service were...
These comments were used to help further understand how
COVID-19 impacted carer experience. Terms related to COVID-19
such as COVID, corona, pandemic and virus were mentioned more
frequently in response to Q30 (My experience with this service would
have been better if). Over 7 per cent of responses to this question
included these key words whereas less than 1 per cent of responses
to Q31 (The best things about this service were) included them. My experience would
have been better if...
The following themes were mentioned frequently through the free-
text comments in relation to COVID-19. We hadn’t needed
services during
COVID-19. Online
Many carers would have preferred some face to face contact with
appointments were
the service
challenging
Using the CES COVID-specific questions we found that the amount of
contact with the service had a greater impact on experience than the
method of that contact. However, many carers still commented in the
free-text responses that their experience would have been better if
there was some face-to-face contact.
For some carers whose contact with the service began during
COVID-19 they found initial appointments and discussions more
challenging over the phone or online. Many carers who had contact
with the service prior to COVID-19 commented that they preferred The best things about
face-to-face appointments. this service were...
Feeling safe during
Regular communication and being involved had a big impact on COVID-19 and
carer experience excellent, professional,
supportive and friendly
Regular contact with carers, and when carers reported that they service always
felt included in d iscussions and care planning were often
mentioned as the best things about a service. While this feed back
is not specific to COVID-19, carers commented that having
frequent contact and access by phone, email or text for upd ates
and appointments made a d ifference to them d uring the pandemic.
Some carers commented that regular updates were especially helpful
during COVID-19, as it provided reassurance and kept them involved
in the care of their family member, partner or friend. A number of
carers commented that family meetings and support groups were
My experience would
not provided due to COVID-19 and that this impacted their
have been better if...
opportunities to be involved and link in with support. While many
carers acknowledged that this was not the fault of the service, it did If not for the virus which
have an impact on their experience. resulted in lock down
& social distancing my
When carers felt that they could contact the service at any time, experience with the
many mentioned feeling safe and supported throughout the service would have been
challenges of COVID-19. Carer experience was varied throughout this a lot better
time, but the benefit of regular communication and involvement was
a common theme.
Consumer and Carer experience of NSW mental health services during the 2020 COVID-19 pandemic 24You can also read
