Adult Secure Service User, Family and Carer Feedback Survey during the Coronavirus (COVID-19) pandemic - March-June 2020
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Adult Secure Service User, Family and Carer Feedback Survey during the Coronavirus (COVID-19) pandemic March-June 2020
Contents
Foreword 4
Introduction 5
Background 6
Themes 7
Activities 8
Outdoor access 11
Leave and progress 13
Communication 16
Digital access 18
Contact with family and friends 21
Preventing the spread of COVID-19 in secure services 23
Physical health 27
Staff 31
Other themes 33
Acknowledgments and thanks 35
APPENDIX ONE – Example Information Sheet & Survey 36
APPENDIX TWO – Methodology 39
APPENDIX THREE – Overview Of Statistics 41
Recovery and Outcomes COVID-19 Survey Report 3Foreword Introduction
The NHS England and NHS Improvement Adult Secure Rethink Mental Illness believes that a better life is possible for
Clinical Reference Group (CRG) were very keen from the everyone severely affected by mental illness. The Coronavirus
outset to hear from and understand the experience of people (COVID-19) pandemic has impacted everyone in the country,
in adult secure and forensic community services, their families including people in secure services, their families and carers.
and carers during the early part of the COVID-19 pandemic. Working with NHS England/Improvement (NHSE/I) who
commission adult secure services, we have explored this
This information is crucial to recovery planning and when considering what a potential second wave and further, finding out from people directly through a survey, what
local lockdown arrangements might mean for the adult secure pathway. The CRG want to ensure that the
information in this report supports national, regional and local discussions across adult secure services to
has been the impact of COVID-19 for them.
ensure future planning considers the findings from the survey. We realise that the impact of the pandemic
continues and appreciate this is an ongoing process to ensure that the views of experts by experience
continue to be heard and shared.
What we did and why any local lockdowns or a second wave of the
pandemic. We wanted to ensure that the voice
In collaboration with NHSE/I and in consultation of people in secure services and their families
with a group of Experts by Experience who work and carers can influence how services are
regularly with NHSE/I Adult Secure Specialised commissioned and delivered.
Commissioning and Secure Care Programme
teams, we developed a survey to gather the How we did this
views and experiences of people in adult secure
services, in adult secure services in all service Responses to the survey in the main were
categories including mental illness, Personality almost all handwritten, scanned and returned
Disorder, Learning Disability and Autism (both to the Recovery and Outcomes team to collate
in the hospital and the community), and their and analyse, pulling out multiple themes per
families and carers, to find out the impact of question while ensuring that individual issues and
COVID-19 on them from March to June 2020. information were highlighted and recorded. As
emerging themes within the survey were nuanced,
We found out what is working well for service we were led by the voices of lived experience
users, families and carers, what is not working which have shaped the report. We have
so well and what improvements people would highlighted areas of practice that were described
like to see during this time. We heard about the as helpful and reflected on other areas that we felt
things that had happened as a consequence of might be strengthened.
COVID-19 that people would like to see continued
in the future. We also asked people what else What we found
they’d like to tell us about their experiences
The most striking finding was the considerable
during this time. We received responses to the
variation in responses – both between services
survey from 368 people from high, medium and
and within the same service. This report sets out
low and community forensic services.
9 key areas where people identified examples of
This report provides an overview of the responses what is working well, as well as where lessons
we received which we hope will support regional could be learnt and improvements made, not
and local discussions across adult secure only for a potential second wave of the pandemic
services, especially as part of their recovery but also to ensure long lasting improvements for
planning and also in relation to the impact of services as a consequence of this experience.
4 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 5Background
Rethink Mental Illness is a charity that believes a better life
is possible for everyone severely affected by mental illness.
In addition to providing services for people living with mental
illness, such as housing, employment, advocacy, training and
education, Rethink Mental Illness has delivered the Recovery
and Outcomes Network for people who use adult low and
medium secure mental health services in England, over the
past 5 years.
Through the network of involvement groups, we Through the survey we have heard about people’s
have enabled people to influence local and national experiences on a complete spectrum – from
policy, while also supporting people who attended really challenging situations, through to stories
as part of their own recovery journeys. We are of enormous resilience in the face of sometimes
delighted to have had the opportunity to organise extreme adversity. People have shared with us
Themes
and facilitate the Adult Secure Service User, Family their fears, their anxieties, and their hopes for the
and Carer COVID-19 survey. future. An enormous number of people have shared
with us their heartfelt gratitude to other people –
We are living in very unusual times. The COVID-19 both staff and peers – for their support during this
pandemic has impacted on the lives of everyone in difficult time. We have learned such a lot about how
the country, including the people who are currently services have coped – and sometimes been really
placed in adult secure services and their families, challenged – and how helpful suggestions have
friends and carers. Through this survey we have emerged to support service improvement.
been able to systematically find out more – much
more and have been bowled over by the response. One of the strongest messages to come out of the The following sections of the report are an We have included areas for further
We are humbled by the amount of time people have survey has been about the variation in people’s analysis of the most common themes: consideration at the end of each section, which
taken to complete the survey, with many running experiences both between different services and are based on the analysis of the themes which
out of writing space on the survey forms, such has within individual services themselves. The caveat • Activities we hope will contribute usefully to the main
been the desire of people to share their experiences of course, is that there is also great variation in how purpose of the report. This will ensure that
with us. We are enormously grateful to all the staff people themselves have coped during this time • Outdoor Access
the voice of lived experience will help shape
in services that have helped facilitate the survey and the responses are of course all subjective. As the recovery of services and contribute to the
• Leave and progress
– by supporting people to complete the surveys, with any aspect of our daily lives, some people continued improvement of secure services.
to scanning and emailing up to 40 responses per have found it easier to manage the situation while • Communication
service. We are indebted too to the families and others in a similar situation receiving the same
carers who also took time to respond – often with service have not found it quite so easy. We believe • Digital access
very personal accounts of what life has been like for that this is another example of the importance of
them at this time. person-centred and collaborative care and support • Family and friends contact
for people’s recovery – even, and especially, during
• Infection control
times like these.
• Physical health
• Staff
6 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 7Activities Among people who said that they would like
to see the increased activities on the ward
There were several responses where people gave
the names of specific members of staff who had
continued, one person said ‘To keep up the been particularly helpful, for example ‘S and R
activities which give purpose that day. As were and are helpful with patients…fun and
some people don’t have leave. Continue the passing time with lots of activities and setting
• It was clear that for some people, As a theme, activities were mentioned: ward group activities that did not happen so up a cinema room for us’ and ‘the exercising
having activities to keep them much before.’ One respondent described a we do with S and R as a gym session’. It was
• Question 11: 79 times out of 344 mixed picture, saying ‘We have all been given not clear whether these were ward staff or people
occupied during this time was
responses – 2nd most common theme more recreational thing to do with has been a who worked across several wards.
working well.
• Question 2: 49 times out of 333 big help’ but also ‘Our activities have suffered
• However, many people told us that a bit due to restrictions where patients have One response commented on the impact of
responses – 4th most common theme
their regular activities had been not allowed to have mingled with other wards’ having people from outside the service facilitating
cancelled and this had been difficult • Question 3: 59 times out of 322 and ‘We would like a wider and more range of increased activities, saying ‘Volunteer office are
– particularly group activities both on responses – 2nd most common theme activities’. sending the patients goodie bags with paper/
the ward and with people from other puzzle activities, and information about the
• Question 4: 56 times out of 282 –
wards. Some people commented that life on the ward coronavirus with recipes for fun food to keep
2nd most common theme
was ‘boring’ and that there were insufficient us busy. That was a kind thing.’
• People also told us that they would
• Question 5: 13 times out of 274 – activities to keep them occupied. Of the 31
like some of the new activities Many people said that they missed having group
6th most common theme respondents who said that ‘nothing’ was working
that had been organised for them activities and that this was something they
well, some later commented in responses to
continued after this period. would like to see reinstated as soon as possible.
other questions that this was because activities
In question 1, the increase in range and that would otherwise keep them occupied For example, people missed having access
availability of activities was often mentioned, had been cancelled. It was not always clear to vocational and educational activities that
with one respondent saying, ‘we are doing whether people were referring to on-ward or would usually be facilitated in groups, such as
‘Having activities during the day. woodwork, gardening and working in the hospital
more activities + OT’s creating projects for us off‑ward activities. Others said they were keeping
Group discussion, chatting openly themselves occupied in their rooms and that was shop. One respondent however said that they
to work on, during COVID-19’. Another said,
and honestly with staff, having Quality helping them cope with life during COVID-19 had been able to continue working in the shop
‘Groups being put on the ward and games
time with staff. Staff getting involved sessions helping to pass the time’. The impact with ‘reading, magazines, writing letters, and commented how important this had been to
in activities e.g. Pop Art, creating of having more activities on the ward was also watching TV.’ them. This was in part due to the impact of the
artwork, Competitions.’ mentioned, for example, ‘I have improved my relational aspect of ‘doing activities together’.
A person in hospital, Q1 social life, engaging in various activities’ The survey did not distinguish between different
wards within the same service, but from the The quote at the start of this section is an
and ‘The activities e.g. movie club, bingo
variability between responses from the same example of how some people commented that
Both between services and within the same service even if you don’t do them it is good for the
service, it was clear that there were differences increased joint activities with staff had had a
there was a marked variation in responses about ward it brings a good atmosphere instead of
between wards in the activities that were positive impact on their relationships.
‘activities’ – enjoyable ways to spend time, relieve people moaning’.
available. This variability was partly down to
boredom and improve wellbeing. People told us
It was clear that some wards had introduced new which staff were facilitating the activities, for
about access to activities, the range of activities
activities to the ward, such as ‘gym on the ward’ example, ‘Our OT is really good at finding ways
available, whether they were individual or in groups
and people said that they would like to see these to make as much as possible accessible.
and whether they were available on or off the ward.
continued. Another person associated increased Whether getting hold of craft supplies,
activities such as these with improvements to adapting recipes. This helps show us how
their physical health, such as ‘Manage to go to creative thinking can overcome a lot’.
gym more and control diet’ and wanted ‘Gym
sessions to continue’.
1 For details on the questions asked in the survey please turn to the Methodology in Appendix Two on page 39.
8 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 9Some people said that not having leave
prevented them from accessing activities such Outdoor Access
as ‘shopping’ or activities beyond the service
that they valued and provided a sense of
‘normality’. We did not ask people to tell us the
The respondents that reported that ‘outdoor
level of security they were in, so it’s not possible • People clearly valued having outdoor access’ was working well told us it was more
to distinguish where respondents are in their access during this time, but there frequent than usual and for longer periods of time.
recovery journey and what types of activity they was considerable variation in both Some people said that this was because staff
would be engaged in usually. Such information access and the processes for gaining were more aware of the importance of this, given
may have provided a better understanding of the outdoor access. that restrictions were in place. ‘Having garden
impact of changes in the provision of activities.
• Some people didn’t have outdoor access at any time and being able to have
access every day, whereas for others fresh air’ was working well for one respondent
Areas for further consideration they had more than usual. who also said this should be continued in the
future. Another person said they had been
People in services reflected that the ‘Walking round the football pitch and listening
following worked well or may work well in to music.’ Another said ‘Letting us out in the
the future: As a theme, outdoor access was
garden, more garden leave even until late
mentioned:
• Working
together with staff to evening.’ Some people clearly related having
co‑produce: • Question 1: 24 times out of 344 outdoor access to being beneficial to their sense
responses – 9th most common theme of wellbeing, with one person saying, ‘When
– activities that are available to people we had no grounds leave [my mental health]
to replace those that may have been • Question 2: 16 times out of 333
was bad’.
lost as a result of COVID-19. responses – 8th most common theme
• Question 3: 17 times out of 322 Some of the people who had less outdoor access
– a timetable of activities at ward and
responses – 10th most common theme than usual said that they were not getting as
service level that meets the needs of
much fresh air as they would have liked, with
everyone. • Question 4: 9 times out of 282 –
one person saying ‘we only get fresh air three
• Having
a ‘peer-based approach’ to 10th most common theme
times a week’ and another saying ‘I only enjoy
positively encourage joint activities. • Question 5: not mentioned the garden and that’s just once a week’. One
person said that ‘For a few weeks we had no
• The
right skill mix of staff to facilitate
leave for exercise and now it is very limited’,
and reflect the co-produced activity
It was not always clear what specific type of and the suggested improvement was ‘More leave
timetables including, for example,
access people were referring to for example ward for groups exercise’.
Occupational Therapists, Qualified
Exercise Professionals, Education or courtyard access or within or outside of the
Others commented on the variability between
staff, Activity Coordinators and other secure perimeter.
wards saying, ‘every other ward gets leave
ward‑based staff.
to the sports field, but we can’t go out to
the sports field at all!!’. As an improvement,
someone from the same service called for
‘sports field every day for exercise’. For those
shielding, outdoor access was a particular issue:
‘Being shielded on ward, only fresh air 10 min
in garden area, whereas other non-shielded
are allowed out in front.’ And another person
shielding said ‘I would like to get to garden’.
10 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 11Some people told us that social distancing and
self-isolation were factors, saying that their outdoor
Some people said they understood the reasons for
less access, the need to socially distance, reducing Leave and progress
space was not big enough to have more than a few the number of people who could be outside at any
people outside at a time and that this was difficult one time and that they understood that this was
for staff to facilitate for everyone. Some people also due to necessary changes in staffing levels.
It was not always clear what type of leave people
said that they would have liked grounds’ access The importance of having fresh air was emphasised • This was the most common theme were referring to so here we are have only
with other people, socially distanced, and access by a family member, saying that this had been an in all of the responses to the survey included responses about grounds or Section
to their phone while outside: ‘More mixing out in important aspect of their relative coping during and overwhelmingly people found the 17 community leave. Some people referred to
courtyard via social distancing.’ this time. One person in hospital summarised restrictions difficult. restrictions on leave as something that was not
what many others said – ‘feel cooped up – feel
At one service ‘Each ward has been treated like • People cited a range of reasons for working well, and said ‘Not able to go off the
frustrated’.
a household. [We have been] using the gardens this – not being able to continue with ward as much’, or ‘For a few weeks we had no
to play games and being outdoors.’ People community activities, feeling ‘cooped leave for exercise and now it is very limited’,
from the same service said they would like to see Areas for further consideration up’ and the impact on seeing friends making it difficult at times to know exactly what
‘more garden access’ continued in the future. and family. people were referring to. What is clear however,
People in services reflected that the is that restrictions to leave have had a very big
Interestingly people from the same service reported
following worked well or may work well in • Some people linked these restrictions impact on people.
a variation in policy and practice between different
the future: to the effect this was having on their
wards, with different levels of access.
progress and were frustrated that From all of these responses, there was marked
• Having access to fresh air every day.
As mentioned in the section on physical health this was holding them up. variability in the management of leave between
below, some people said that reduced outdoor • Working with staff to co-produce: services and even within a particular service, with
• There was also frustration for
access had impacted on their ability to exercise one person saying ‘I feel it is not fair only one
– policies about access to outdoor people that lockdown easing in the
as much as they would have liked, also linking it ward has leave, I feel it should be given to all
spaces and how they are used. community was not always reflected
to reduced off-ward gym access and access to wards’. We did not ask about the level of security
in the lifting of restrictions in their
community leave. One family/carer of someone – A programme of activities that could or ward that people were responding from, which
hospital.
in hospital commented that ‘Lockdown of the take place safely outdoors. may account for the differences. One respondent
hospital has resulted in patients having very said, ‘There has also been confusion with
little exercise time outside. Every week there is regard to my normal leave with me being
days when there is no exercise time at all and told different things by different people. For
‘Really hard without leave, especially
on some days there is only one half hour. This is instance, I was told that I could see my family
for our mind, body, soul’
a big backward step for a patient who has been in the park per the government’s advice yet
A person in hospital, Q2
having unescorted leave in the community.’ the hospital are now saying that this shouldn’t
This person also suggested that there could be be allowed. They are playing with peoples’
improvements to how existing outdoor spaces lives and it is not fair.’
could be used, saying that the service could ‘Better As a theme, leave was mentioned:
Some people commented on the impact to their
utilise the enclosed external open spaces in the • Question 1: 16 times out of 344
mental health that restrictions to leave were
hospital more, for the benefit of all patients.’ responses – 11th most common theme
having. One person said, ‘Not being able to
• Question 2: 120 times out of 333 go out on section 17 / this makes me feel
responses – most common theme depressed’. Another person said that they were
experiencing ‘cabin fever’. Other people said
• Question 3: 93 times out of 322
they understood the reasons for the restrictions
responses – most common theme
and knew that they would be lifted in the future,
• Question 4: 18 times out of 282 – though there was some anxiety around when this
7th most common them might be.
• Question 5: 7 times out of 274 –
12th most common theme
12 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 13For some, restrictions to community leave Impact on progress Some people said that they understood the mental health. In the absence of other markers of
were framed in descriptions of the limitations difficulties, one carer said: ‘I was upset that my progress this was now holding them back, with one
this imposed – opportunities for exercise and Some service users and their families and carers son hadn’t progressed as expected but now carer saying:
community activities, connectivity to the outside commented on the impact of COVID-19 on kept really well informed and understand the
world, a sense of ‘normality’, restrictions to people’s progress, continuing on their recovery reasons why.’ Another carer explained how a ‘My son came on leaps & bounds in X hospital
activities such as shopping or ‘vising the local journey through and out of secure care. It was planned discharge was interrupted: – it was time for him to move on, a place
café’ or access to smoking. Many people cited clear from the responses about progress that called Y, said they would take him 2 months
the impact restrictions to leave were having on there was a marked variability in the impact it was 'My daughter has been waiting to move, and this later they decided they couldn’t and his
contact with family and friends, discussed below. having on people, both at an individual level as has been impacted as follows: behaviour deteriorated. These places should
well as between services. Only one person said NOT, tell someone they can go + then change
During the timeframe of the survey, the in answer to question one that their progress was • Delay due to hospitals being uncertain as they their minds.’
government eased some of the wider lockdown still going well, saying that they had ‘Progressed went into lockdown about their plans (so it
restrictions, and it was clear from some of the with U/E leave. Referred to LSU.’ Someone has taken ages for her to be assessed) Some people had been able to move on during
later responses that people were aware of from the same hospital said that they were ‘Being this time but were still facing difficulties caused by
• The assessment has been done on paper – COVID-19 in their new placement. One carer told
this and felt frustrated that similar easing of stuck in the hospital and not being able to
nobody has come to meet her us: ‘Glad that my son is now out of the semi
restrictions was not taking place in their hospital, progress with my leave.’ Another person said,
saying ‘The community has been given more ‘Even though we are in all this my discharge secure hospital and making steady progress in
• She has now been offered a bed but the move
freedoms’. For others, the lifting of restrictions planning has continued and a placement found the care home he has moved into. Unfortunately,
cannot take place as the ward she is moving
was being reflected in their access to leave, with – I had a virtual 117 meeting’. no contact made by any staff from [his care
to is unsettled presumably in part due to
one person saying, ‘I have also been allowed home] with me. [Visits have] stopped and we
COVID-19'.
to go for walks as lockdown restrictions Most people who commented on their have not seen each other for 3 months.’
have lessened.’ Another person told us how progress said that they just wanted ‘more Another carer similarly said:
restrictions to leave were being lifted, saying, progress’ with one saying ‘[I] want to continue
‘Now we have one hour ground leave, plus progression to discharge.’ Similarly, another ‘It is also a great shame that she has had to stop Areas for further consideration
2 hours community leave for unescorted said that the pandemic was ‘Delaying Section her first steps to getting out of there (voluntary People in services reflected that the
patients per day. We can only venture out 17 leave progress’. Someone else told us work, unescorted trips out etc) – all put back! following worked well or may work well
into the community within a one mile radius. that ‘Placements have been paused until Nobody’s fault of course!’ in the future:
We are not allowed into shops. I can now further notice.’
For others, the current situation was clearly holding • Working with staff to co-produce policies
have visits with my family – but only in the
Another person said that ‘I am frustrated them up: around grounds and community leave, as
grounds unsupervised.’
that my discharge keeps being delayed. I lockdown eases and restrictions change
have completed therapies, + meds. My care ‘There have been issues with being allowed to
One person also commented on the importance • Preparing for future possible waves of
package would not be too big as I have my go to my placement in the community despite
of being kept informed about the progress COVID-19 or local lockdowns with clear
own home to go to. I have applied for Tribunal, the restrictions around lockdown starting to
of lockdown easing, saying ‘Please will the communication about any changes as
but I was hoping that I could be discharged to be lifted. I struggle to understand how people
hospital trust keep us fully up to date and soon as possible
my family home who I have not spent time with can now shop as much as they like yet I am
informed of when any restrictions might
in 8 years’. It is important to note, some people not allowed to spend a day in my own self- • Being able to talk through any concerns
be lifted, and when things like visits and
said that the prospect of moving on was causing contained flat. This is extremely disappointing and aspirations about the use of leave.
trips to the community are to be reinstated.
anxiety at the present time, with one person although I would like to say that my MDT have
Thank you’. • Where leave hasn’t been able to progress
saying, ‘I’m a bit anxious about moving on…am been pushing for me to be allowed to go. The
problems originate from senior managers.' as a result of restrictions, having
anxious about moving to another place.’
other ways to track progress towards
This person went on to say that as an improvement: discharge.
‘I would like senior management to be more • For families and carers to be involved
flexible with regard to going to my placement. in discussions about leave and
They should consider each case on its merit and progress and to be kept updated about
not use blanket restrictions’. any changes.
Some respondents told us that the pause in their
progress was having a detrimental effect on their
14 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 15Communication What seems to have worked well based on
responses was where consistent and structured
One carer said that they ‘would have liked more
information as to what the Mental Health Team
update meetings took place about the changing have been thinking about treatment, perhaps
conditions due to COVID-19. Some wards had by video link’. Some carers said they would also
‘COVID-19 weekly meetings to tell us about like to see ‘regular contact with staff’ continued
• Many people told us that effective Communication as a theme was Government guidelines and discuss what we and for services to look into alternate means
communication was very important to mentioned: can do next’ and ‘what’s happening’. It was of communication e.g. digital/virtual. ‘Regular
them – where it worked well for both appreciated and valued when staff ‘explained updates on for example visits being reviewed’
• Question 1: 36 times out of 344 things well and kept up to date’. would be well received along with ‘proactive
people in services and their families
responses – 7th most common themes engagement with carers’. Some people said
and carers, it was very reassuring
One person in a service summarised this by they would like services to provide ‘regular
during this time. • Question 2: 13 times out of 333
saying ‘What worked well was when we communication with carers about what’s
responses – 10th most common themes
• People told us that the use of were kept informed of the situation and why happening in the service’, with explanations
digital technology was helpful for • Question 3: 20 times out of 322 certain decisions were being made… further of the ‘restrictions that are in place’ and that
communicating effectively. responses – 8th most common themes decisions were being made for our leave the processes around these communications be
and activities within the hospital. There was ‘co‑produced with carers.’
• However, from some of the responses • Question 4: 16 times out of 354 –
good communication again. We (the patients)
there was at times a lack of effective 8th most common theme
understood the directives made when there Others suggested that ‘written communication
communication between people in
• Question 5: 3 times out of 274 – was a good explanation for their justification from the hospital each time big changes are
services and staff, between services
21st most common theme and reasoning’. made from the government so we can clearly
and families and carers, and in
see how they are applying changes within
receiving timely and useful updates Some families and carers said they were grateful their units would be helpful and appreciated.
about COVID-19. when they were communicated with well ‘I
Communication intrinsically links with many of They would also like to ‘continue with regular
the themes that are highlighted in this report. was upset my son hadn’t progressed as COVID meetings’.
Responses encompassed the practicalities of expected but was kept really well informed and
having the means e.g. digital access, to be able understand the reasons why.’ Alternative ways of One person summarised this theme by saying
‘I have had positive + clear communication communicating with family and carers were most ‘The most important thing is to keep all the
to communicate with those within the hospital in
from the hospital from my daughter’s welcomed – ‘Zoom meetings (with the hospital) patients informed with good communication.’
relation to their treatment as well as being able
psychiatrist with him calling me by phone have been very useful for carers to keep up with
to stay in touch with family and carers within the
regarding her wellbeing/safeguarding + constraints imposed by COVID-19. There was also the current situations.’
coping during COVID-19’ Areas for further consideration
the wider need to communicate the updates and
Family member or carer of someone in The ability to have continued engagement with
changes within the hospital and community due to People in services and families and carers
community teams was viewed positively with one
hospital, Q1 COVID-19 and the related impact on individuals’ reflected that the following worked well or
person in a community service said having ‘regular
day to day life, restrictions and progress. Families may work well in the future:
contact with my community team has helped
and carers, without face to face contact, relied
me, either by the phone or video calls’. • Working together to co-produce a
even more heavily on communication about people
communication strategy to ensure clear,
in services. What did not work as well is when there did not regular and up-to‑date information
appear to be any regularity or ‘consistency’ about government announcements
in communicating relevant messaging. There on COVID-19 so the impact of the
also seemed to be some frustration around restrictions on the services is shared
contradictions on the ward and staff not ‘singing with everyone.
from the same hymn sheet’.
• Include how regular service updates for
families and carers will be communicated
and in what format.
16 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 17Digital access One carer commented that ‘The virtual visits
have been great, it’s very difficult not to hug
The following quotes from people in services
summarise the benefits of digital access, but also
our loved ones, but to be able to at least highlight the need for choice:
see them on the call has been incredibly
comforting’ and someone in a service said ‘I am ok to have my doctor on a computer
‘I want to see family again but video visits screen during my MDT and CPA’
• People told us how much they valued As a theme, digital access was
having access to phones and digital mentioned: are good!!!’.
‘I would rather professionals, like my doctor
devices to enable virtual contact with be in the room for MDTs + CPAs rather than on
• Question 1: 59 times out of 344 Many people said that the use of digital
the outside world. a computer’
responses – 4th most common theme technology was positive and there was a desire to
• However, digital access was not continue this in the future. However, it was clearly
• Question 2: 21 times out of 333 ‘Having access to my OT by ‘attend anywhere’
universal across all services, with expressed that it should be seen as an option
responses – 7th most common theme on the computer so that I can see her and talk
some services facilitating very limited or an alternative in the future, not an automatic
virtually face to face.’
access or none at all. • Question 3: 18 times out of 322 replacement for face to face contact. It was seen
responses – 9th most common theme as a welcome addition or development, especially Some families and carers highlighted frustrations
• Where there was digital access, some
to those families who do not live close to the around digital processes and practicalities of
people told us that the processes for • Question 4: 36 times out of 282 –
hospital. access. Even where technology was available,
their effective use were sometimes 5th most common them
problematic and impacted on the some people said the practicalities around digital
• Question 5: 8 times out of 274 – Families and carers said they were very
quality of their experience. visiting didn’t always work well, for example,
9th most common theme supportive of virtual visits becoming a permanent
point of staff contact, adhering to designated time
option going forward, and to allow for more
slots, ensuring devices were charged and ready
friends and other family members to maintain
to use and staff members being trained in the use
Digital access crosses many of the themes in this type of contact. One person said, ‘the Skype
‘Skype - enables better contact - good of Skype or FaceTime etc.
this report – communication, family contact and visits are extremely important in terms of
for my wellbeing and allows him into ensuring the patient stays visibly connected
visits as well as contact with medical teams both In some cases, it took considerable time for
my life. ‘Let me see around your house to the person who supports them, as this wards to get a working device so contact could
in hospital and the community. It was clear there
Mum’. I can show him where I’ve put was a marked variability in digital access between helps patient recovery stay on track.’ And happen. Some people said that perhaps access
things he’s made for me which I hope services and within individual services. that by being able to still have contact with their to devices was not prioritised enough. One
means he recognises that he has never family member in hospital they ‘still feel actively person said, ‘My daughter was booked in for a
been forgotten and he is still in my life’. Those who had the opportunity to use devices involved in my son’s care’. Skype visit. She received a confirmation email
Family member or carer of someone in to stay in contact with family and carers found it from the reception team informing her of the
extremely beneficial and ‘comforting’, and while Some people said that having virtual
hospital, Q1 date & time. She logged in to Skype, was held
they voiced their sadness and disappointment in appointments with their care team was viewed
in the virtual lobby for 15 minutes but was not
being unable to see their loved ones in person, as a positive experience. However, it was
connected. She rang the ward to inform of the
both family and carers and those in hospital expressed that it would be a good addition but
visit, but staff had forgotten. My daughters
acknowledged that being able to keep in contact not a replacement for face to face consultations
visit was unable to go ahead.’
and have ‘virtual visits’ was great and really going forward. One person said having access
made a difference. Many people were very to ‘Video teams for clinical meetings, CPAs For another person, poor sound quality and the
positive about simply ‘having access to the and managers’ hearings’ was viewed very positioning of the device impacted the ability to
internet on their laptop’, being able to ‘use positively and noted as something that was going be able to communicate well, saying ‘There has
phones in their rooms’ as well as ‘having more well. Continuation of meetings virtually was also been a sound quality issue during the Skype
internet sessions and access.’ mentioned as being very helpful for people living visit. The Skype visit is conducted on the ward
in the community. laptop. The patient can hear me, but I often
cannot hear the patient terribly well. I believe
it is a problem at ward level on the laptop. It is
not a problem on the appliance I use.’
18 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 19Another carer told us ‘The arrangements made
for parents to participate in meetings [CTM’s Areas for further consideration
Contact with family and friends
etc] were wholly inadequate. I participated
in several meetings and found the phone People in services reflected that the
connections dreadful. I couldn’t hear most following worked well or may work well in
of what was being discussed, lots of people the future: Reduced contact with family and
• Where visits and family and friends
were talking at the same time and you really • Working together with staff to co- friends
contact reduced, people in services
couldn’t follow anything going on. The meeting produce policies and procedures told us that this was very difficult for Suspended leave and visits during lockdown
where I was able to Skype was no better; the for the use of devices, ensuring that them. have meant that people have been unable to see
computer was placed in the board room so appropriate practices are adopted to their family or friends in person. Many survey
far away from where the people sat that you keep people safe. • However, where contact was still
respondents told us that this had been one of
still couldn’t see or hear much clearly. And it facilitated virtually, people told
• Looking to see how services may be the biggest struggles at this time. One person
took weeks and weeks to get the information us that this had made a positive
able to give people the opportunity said ‘I can’t see my mum my family or my dog,
needed to Skype with J and I still haven’t difference to their experience during
to order devices as necessary, taking I understand the stress of other people not
managed it as it is difficult to get the ward staff this time.
into consideration any future lockdown being able to see their family, it just feels like
to say when it will be convenient to Skype J’. • It was often commented that people they have been taken away from me. It makes
measures.
in services and their family and me feel sad. Lonely. It makes me stressed’.
Overall, the use of technology to enable • Undertaking a regular audit of working carers would like to keep the option
people to communicate with each other was devices currently available on the ward People told us in response to question 2 that ‘Not
of virtual contact as well as face-
overwhelmingly positive to families, carers and to help support staff to plan for digital being able to see family/friends’ on leave and
to-face visits and to have a choice
people within services and is summarised here: visits/appointments. having ‘no social visits’ or ‘Family visits’ had
about when to have either – this was
especially true for people whose understandably been difficult at this time. This
‘Skype virtual visits have been implemented. • Having the option of virtual visits as a
family and friends lived far away. was true of people in inpatient services and in the
This is fantastic because my son & I get to see ‘blended’ option for family visits and
community with one person saying: ‘Not being
each other. Visits are once a week. It means I medical team appointments.
able to see my family and friends who are
can check if he is alright.’
my support network’. Someone else said ‘Not
‘I miss my family and friends like crazy being able to see my family or friends, and
especially my best friend and we need to obviously not being able to hug them or be
see those people soon as it is affecting close to them’ was not working well for them.
my mental state!’ In some services, we were told that ‘Each ward
A person in hospital, Q5 has been treated like a household’, meaning
that people on one ward could no longer socialise
with friends on another ward. One person said
that ‘Not being able to see our friends from
As a theme, contact with family and other wards when walking around’ was hard for
friends was mentioned: them.
• Question 1: 18 times out of 344
responses – 10th most common theme Impact on family and carers
• Question 2: 83 times out of 333
‘Not able to visit at present, but
responses – 3rd most common theme
understandable in present pandemic.’
• Question 3: 31 times out of 322 Family member or carer of someone in
responses – 5th most common theme hospital, Q2
• Question 4: 4 times out of 282 –
14th most common them Thirty-nine family members or carers responded
• Question 5: 6 times out of 274 – to the survey. They reported struggling with
15th most common theme ‘Not being able to visit’ their loved one which
mirrored the experiences of people in services
20 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 21above. There was an understanding that this was
the safest thing for everyone. One carer said:
Lockdown easing and moving
forward
Preventing the spread of COVID-19
‘Missed my family. But understand why’.
‘If people in the community can go out
in secure services
Friendships in secure services
and see people from a safe distance why
Some people said that lockdown had given them can’t we?’ One of the biggest changes to life in secure
the opportunity to spend more time with their • Overall, people told us they were services has been the infection control measures
A person in an inpatient service, Q3
peers on the same ward and build friendships: very understanding of the measures brought in to prevent the spread of COVID-19.
‘All the patients have been together playing that needed to be in place to limit the This section of the report overlaps with other
games… I have been using this time to restore Some people who submitted survey responses impact of COVID-19 and keep them themes such as Outdoor Access, Leave, Physical
broken friendships on the ward.’ after government lockdown easing measures safe. Health and Staff, and was an important issue to
were announced expressed frustration that
• Some people told us that they would respondents.
One person said ‘Being able to bond with people in the community were now able to see
patients and staff more’ had been a positive friends and family but that visits and leave in their value some of the measures, such
The survey found that people in inpatient
outcome and ‘…spending more time together, service had not restarted. One person told us as social distancing and increased
services were worried about catching the
interacting more with each other’ had been that not ‘being able to see family as lockdown hygiene, to remain in place for some
virus. One person told us that their ‘Anxiety
something good to come out of lockdown. eased’ was not working well for them. time to come.
levels have gone up with a real fear of
getting covid especially as I have underlying
Digital contact However, in other services visits had been
health conditions…’
reinstated quickly and people told us that this
As already outlined in the Digital Access section, had been a positive change with one person in ‘I know the staff are putting in the right Some people told us that they had confidence
some carers said that staying in touch on the an inpatient service saying ‘I miss my family but procedures to control the virus, so at in the measures put in place in their service, with
phone or through digital platforms had worked now visits are happening its good’. least with all my other problems, I don’t one person telling us there had been ‘A careful
well for them, saying: ‘WhatsApp phone calls
have to worry about this’ & responsible approach tackling COVID-19’.
with loved ones’ and giving examples such as:
A person in hospital, Q1 While another said there was a ‘…reassurance
‘Extra Tablets bought in so we can Skype our Areas for further consideration
that all safety precautions have been taken
family and friends’
People in services reflected that the and that the staff have been very helpful.’
One carer said: ‘I am in touch with my son following worked well or may work well in
the future: As a theme, infection control measures There was also an understanding of the
by phone as he is well enough to do this but
were mentioned: importance of protecting others through the
do not know when it will be possible for us • Informal peer-to-peer support and measures taken, with one person telling us
to meet.’ Another told us they felt ‘actively relationships encouraged through • Question 1: 70 times out of 344 that ‘…the hospital is under pressure with
involved’ in their son’s care through ‘Keeping in socially distanced activities. responses – 3rd most common theme COVID-19, so I am happy to do what I can to
touch with via telephone regularly’ and having
• Working together with staff to • Question 2: 87 times out of 333 help’ and another that they have ‘…been happy
‘Skype contact as an alternative to visits,
co‑produce policies to support responses – 2nd most common theme to follow the guidance so not to pass on the
including child visits’.
people to stay in contact with family virus to anyone else.’
• Question 3: 46 times out of 322
One carer spoke of their frustration that their and friends.
responses – 3rd most common theme The survey revealed that people thought there
‘relative [is] not allowed to possess a mobile
• Virtual visits and digital contact with was a difficult balance to achieve between
phone’ and another said an improvement at this • Question 4: 54 times out of 282 –
family and friends to continue, beyond processes to prevent the spread of the virus
time would be ‘better access to Skype calls 3rd most common them
COVID-19, where services have these and supporting people’s mental wellbeing
to family’. However, another carer said they
mechanisms in place. • Question 5: 29 times out of 274 – and recovery, especially as lockdown eases
had enjoyed the ‘regular phone contact with
4th most common theme and people in the community are allowed
relative. Live far away so this works for us.’
more freedoms.
This could be a move supported by many carers
of people who are placed at a distance from their
home area.
22 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 23Which infection control Testing positive for COVID-19 Hygiene Which infection control
measures have been working People that had ‘tested positive for COVID-19’ Some people in inpatient services told us measures have not been
well in services at this time? said they were looked after well with one person that personal hygiene and hand washing had working so well at this time?
saying ‘I was treated very well and obviously improved from pre-COVID-19 standards and that
made a tremendous recovery’ and another this had been a positive change. One person said Social distancing
‘The nurses Have been in control of the was grateful to have recovered ‘I caught the that ‘…the heighten standards of hygiene have
situation on the ward’ epidemic and got over it so I am happy’. This been very reassuring’.
A person in hospital, Q1 ‘Social distancing is not realistic in
was also highlighted by a carer whose son had
caught COVID-19 and was ‘…very well looked One respondent said they had been washing hospital and very hard to achieve’
after and said himself that the staff could not their hands ‘…more than usual’ and another A person in hospital, Q4
Some people said that the infection control
have done more for him which is praise indeed remarked that the overall ‘Cleanliness had been
measures had worked well in their service. One
from a patient’. Another person said: ‘Everyone good’. People also said they hoped ‘Such things Some people told us that ‘Social distancing’ had
respondent told us ‘The hospital had done all
did a fantastic job containing the spread of the as cleanliness and hygiene’ would continue in not been working very well in their service with
they can’.
virus from people who tested positive’. the future. one person saying there was ‘A clear lack of
A carer shared a similar experience, saying social distancing for much of the time’.
Personal Protective Equipment (PPE) We were told that staff had supported with this
‘Protective measures at the hospital seem to
and made sure that people were washing their There was a call from one respondent for
have kept infections low, well done’.
hands more frequently with one person telling us staff to be more ‘pro-active’, and make sure
A range of different ways to prevent or halt the
‘Masks are working well’ that ‘Staff keeping us safe and ensuring we that patients, people working in, and visiting
spread of the virus were mentioned in survey A person in hospital, Q1 wash our hands regularly.’ services were aware of and keeping to the social
responses as working well: distancing rules.
A carer also told us that they were pleased
There was anxiety from some people about
Restrictions and Isolation that there was ‘…hand sanitiser provided’ Some people said it had worked and they wanted
COVID-19 being brought into hospital from staff,
for patients, people working in, and visiting a to ‘Keep social distancing a priority’ in their
with one respondent saying ‘…staff are the
As outlined in the Outdoor Access, Leave and secure service.
ones bringing the virus in, we aren’t allowed service even as lockdown eases.
Family Contact sections of the report, some
out’ and another person saying ‘…staff are
people said that ‘being indoors’ and ‘staying
in contact with the COVID-19’. Many people
inside’ and restricting leave was working well to
seemed reassured though by the Personal
stop the spread of the virus.
Protective Equipment (PPE) in use in their service
One person told us ‘Being isolated has been and with ‘Staff taking extra precautions’.
good because it has protected us from
There was some anxiety noted around the way
catching the coronavirus’ and another informed
PPE, especially masks, looked on people, and
us that more vulnerable service users who
this is outlined in the ‘What isn’t working well’
needed to shield were being ‘well looked after’.
section below.
24 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 25Masks
Areas for further consideration Physical health
‘Sometimes the staff can look People in services reflected that the
intimidating with masks on like following worked well or may work well in
Halloween’ the future:
• We linked a broad range of different As a theme, the different aspects of
A person in hospital, Q2 • Working together with staff to:
responses into the theme physical physical health discussed here were
– Agree a balance between maintaining health – for example, managing a mentioned:
Some people said that the masks used by staff infection control measures to healthy weight, physical activity, diet,
were scary, strange or intimidating, with one • Question 1: 44 times out of 344
help keep people safe and easing smoking, e-cigarettes and sleep.
respondent telling us: ‘it scares me with the responses – 5th most common theme
restrictions in order to support
masks’. Another person stated it was ‘something • People told us about having both
people’s wellbeing. • Question 2: 39 times out of 333
like out of Star Wars with the PPE’. increased and decreased access to
responses – 5th most common theme
– Agree how lockdown easing in the physical activities, with a detrimental
Some people said they had ‘not been given community can be safely reflected in effect on their physical health and • Question 3: 32 times out of 322
masks’ and would feel safer if had. Another their service in a timely manner and wellbeing. responses – 4th most common theme
person said, ‘I have found it difficult because communicated to everyone. • Question 4: 13 times out of 282 –
• There was marked variability in
wearing the mask I didn’t like wearing it’. 9th most common them
– Coproduce policies for implementing smoking polices across services,
social distancing measures taking into with some people telling us that they
COVID-19 Testing • Question 5: 9 times out of 274 –
account ward size and layout. were able to use e-cigarettes in their
7th most common theme
room and others telling us that they
– Co-produce communications for
‘[More] Frequent tests for COVID-19’ were unable to smoke at all during
people in inpatient services around the
A person in hospital, Q3 lockdown. In their survey responses, some people in
use of masks.
services told us that rules around smoking,
– Ensure the use of PPE is not diet and physical activity had changed during
A few people said they had been tested after
triggering, scary or incompatible with Physical Health was felt to be a very important lockdown, becoming on one hand more restrictive
developing the symptoms of COVID-19 with
a recovery-centred environment e.g. theme based on the recent DHSC Obesity and for others more relaxed.
one person saying that ‘Being tested and
using clear masks or having staff pin Strategy, where being obese was found to be a
being negative was a mind reliever.’ Some
photos of themselves on their jacket risk factor of dying from COVID-192. In addition, Some people said that access to gyms and
people told us that they would like to see more
so people can see their face and COVID-19 is a respiratory illness and smoking outside physical activity had been restricted due
‘Prompt testing’.
working one on one with people who tobacco and e-cigarettes is thought to increase to restrictions on grounds and section 17 leave.
are afraid. vulnerability to the illness3. Others told us that they had been having an
increased number of takeaways during this time
• Continuing certain infection control
and that there had been a relaxation in the rules
measures, such as increased hand
around e-cigarettes and smoking.
hygiene, to maintain the quality of the
living environment and prevent spread
of other illnesses.
• COVID-19 tests being readily available
to patients and those working in
services.
• Continuing to inform families and carers
and people on the ward if someone
has tested positive for COVID-19
and keeping them updated on their
recovery.
2 DHSC (2020) ‘Tackling Obesity: empowering adults and children to live healthier lives’
3 Action on Smoking and Health (2020) Quit For COVID-19 campaign
26 Recovery and Outcomes COVID-19 Survey Report Recovery and Outcomes COVID-19 Survey Report 27You can also read
