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1HELP THEM HOMEThe challenges facing families of older patients
HELP THEM HOME
The challenges facing families of older patients
1HELP THEM HOMEThe challenges facing families of older patients
FOREWORDfrom Royal Voluntary Service Chief Executive, David McCullough
Cuts in social care budgets mean that many older people leaving hospital fail
to get the same level of support from the state that they once did. As a result,
when older people are discharged there is often an expectation that family
and friends will step in - and of course, this can be just what vulnerable older
people need to help their recovery.
But in modern-day Britain not everyone has this supportive circle close by. In
fact, our research has identified that 30 per cent of older people do not have
a strong family support network.
Now that formal care is in shorter supply the hospital teams overseeing
discharge need to make a realistic assessment of the strength of an
individual’s informal network for the weeks ahead, not just for the next few
days. Because in many cases the real picture is disguised by activity at ‘point
of crisis’ where family rallies round the hospital bed but then quickly return to
their own homes and busy lives.
We believe that this assessment is pivotal in ensuring a good recovery and
avoiding a rapid return to hospital.
In the absence of a strong support network, we know that there is a clear
opportunity for volunteers to provide the support that family or close friends
would if they were able and available.
To improve the patient experience; to support recovery and to help alleviate
pressure on NHS services, we believe that hospitals struggling with delayed
discharge and readmissions should include volunteers in Home from Hospital
services right across the UK.
David McCullough
Royal Voluntary Service
Chief Executive
2HELP THEM HOMEThe challenges facing families of older patients
CONTENTS
Foreword 1
Executive summary 3
Key Findings 4
Introduction 7
The NHS and social care context 8
What we already know about patient discharge 11
The experiences of family members 14
The hospital experience 14
Care and support at home 18
Looking to the future 21
Conclusion and summary 24
Recommendations 26
References 28
3HELP THEM HOMEThe challenges facing families of older patients
EXECUTIVE SUMMARY
The health and social care system in Britain is under severe pressure.
For example, in England the latest data on delayed discharges shows that
in September 2015, there were over 147,000 days of delay when patients
who were clinically fit could have left hospital, over 30% higher than five
years previously.
We know from our previous report, Going Home Alone, that hospitals and
the wider system are also under pressure to discharge prematurely, and this is
associated with a five-fold risk of readmission within three months, compared
to those who judged they were discharged appropriately.
Going Home Alone identified that the majority of patients did have some
form of support at home from friends and family, professional carers and
volunteers, and many were living with a partner or spouse at the time of
readmission. However, it did not get under the skin of this support, how
family, spouses and carers were coping, or their views on the support
received and required for their loved ones on discharge. Examining this
part of the process is critical if we are to improve outcomes and prevent the
vicious cycle of readmission with all the human and health and care system
costs that entails.
5-FOLDrisk of readmission within
three months when patients
are discharged prematurely.
147,000days of delay when patients
who were clinically fit could
have left hospital...
...this is
30%higher than five years ago.
4HELP THEM HOMEThe challenges facing families of older patients
KEY FINDINGS
The hospital experience
Most patients were visited frequently by their offspring and wider family and
friends. However, a significant minority received rare or no visits, often due to
travel or relationship problems.
For offspring, premature discharge is a much bigger problem than delayed
discharge, 19% of respondents thought their parents were discharged too
early. This is in stark contrast to the public debate on discharge, and given
the association between premature discharge and readmission, may also be
leading to preventable costs.
Although most offspring thought hospital staff had a good understanding
of the patient’s personal circumstances, 29% said that staff had not had a
conversation with them about this, or how it affected care needs.
Most significantly, those that were asked about their parent’s personal
circumstances were over twice as likely to report that their parent’s discharge
was appropriate.
Care and support at home
One in four respondents had concerns about the care received by their
parent after post-discharge, with the majority feeling there was not enough
care received, and key concerns about them also being a carer for their
spouse or partner.
Of those who had concerns about post-discharge care, almost half felt
unable to share those concerns with staff for a combination of reasons
including a perceived lack of knowledge and sense of “doctor knows best”.
Those who felt their parent was discharged prematurely were almost
eight times more likely than those that didn’t to have concerns about
post-discharge care.
Many respondents helped their parents regularly and some said their
parents didn’t require help. But one in five people felt guilty about not
being able to do more.
5HELP THEM HOMEThe challenges facing families of older patients
Looking to the future
Although the majority of respondents had strong family networks which
would help them cope with caring for older relatives without external help,
a large minority – over 30% had weak or non-existent networks to help
them do so.
Nearly a third (30%) of respondents said they would not be able to
accommodate their parents if they had to recover from a hospital episode.
In response to a question about whether they could put up older relatives in
their own homes as opposed to care homes, less than 30% responded that
either themselves or others in their family would definitely be in a position to
do so for their parents.
What does this mean?
Delayed discharge is a key issue for policy-makers, the health and care
system, patients’ and their families. Going Home Alone showed how older
patients who thought their discharge was too early, were five times more likely
to be readmitted. This new research with patient’s families, shows this is a
significant problem from their perspective too, one in five of our respondents
said the discharge was too early, far more than said the discharge was
delayed.
Clinicians need to talk directly to patients’ families about their personal
circumstances post-discharge, since we find this in itself is associated
with perceptions of appropriate discharge. Better and more consistent
communication is likely to lead to more appropriate care packages,
including the contribution of volunteers.
6HELP THEM HOMEThe challenges facing families of older patients
One in four families had concerns about the post-care discharge their
parent received, including the amount of care they could give and concerns
for parents who were carers themselves.
Looking forward, many families were worried about their ability to
offer the care needed if their parents were admitted to hospital in
future. Although many families have strong family support networks,
over 30% do not. With existing cuts and restrictions on funding going
into social care, the services of volunteers are likely to be needed more
than ever. There are important questions about how those services will
need to adapt, change and scale up to help meet that challenge.
20%of respondents thought their parents were discharged too early, potentially leading to avoidable readmissions.
30%of respondents said hospital staff had not had a conversation with them about their parents’ personal circumstances.
Over
50%of respondents had concerns about post-discharge care with many feeling unable to share those concerns.
Over
30%of respondents had weak or non-existent networks to help them care for older relatives at home.
30%of respondents wouldn’t able to accommodate their parents following a hospital stay.
1 in 3felt guilty about not being able to do more.
7HELP THEM HOMEThe challenges facing families of older patients
INTRODUCTION
Ensuring older people have good experiences in hospital and are neither
discharged prematurely or with undue delay when clinically fit is critical to
good health and wellbeing and the efficient functioning of the health and
care system.
Royal Voluntary Service, assisted by the Kings Fund, analysed the results of
research conducted with a nationally representative sample of 1,000 adults
with a parent over the age of 75 in England, Scotland and Wales who spent
time as an inpatient in the last five years. The research conducted by
PCP Market Research, which took place between 26th October and
6th November 2015, asked about the experience of the longest stay.
It sought to understand: the experience of hospital care; the relationship with,
and knowledge of, clinicians; the level of support required and needed; and
the relationships between these factors.
This paper is structured as follows. Firstly we review the current health and
social care context, with a focus on delayed discharges and the availability
of social care. Against this context we set out the core findings of our new
research with those families whose older parents have been discharged
following a significant inpatient hospital stay, their experience of discharge
and the support that is available. We follow this with a discussion and
recommendations. This analysis has been undertaken to determine measures
that can be put in place to ensure older people have a better experience of
discharge and that they have adequate support when they return home.
SECTION 1
8HELP THEM HOMEThe challenges facing families of older patients
THE NHS AND SOCIAL CARE CONTEXT
The NHS and social care are currently under severe pressure. Across Britain,
the appropriate care of older people is a priority.
Last year, the Government in Wales published a framework aimed at
delivering integrated care for older people with complex needs (Welsh
Government, 2014). The framework is focussed on preventative services and
support to maintain wellbeing, as well as on ensuring that older people have
control over their care. The aim is to strengthen community care and prevent
unnecessary hospital admissions, while ensuring that people are not delayed
unnecessarily in hospital and that they are adequately supported on their
return home.
The Scottish Government’s plan for older people is set out in Reshaping
Care for Older People, a 10-year programme for change aimed at improving
services for older people by shifting care towards anticipatory care and
prevention. The emphasis is on moving away from traditional “institutional”
care towards care at home and within the community, a shift which is being
supported by a dedicated Change Fund.
SECTION 2
9HELP THEM HOMEThe challenges facing families of older patients
There have been a plethora of policy initiatives in England with the focus on
integration of care for older people from the Better Care Fund to new models
of care as part of the Five Year Forward View (NHS England et al, 2014).
The mechanisms to take forward these policy initiatives are different, and
in that we can learn from each other (Ham et al, 2013) but across Britain
support for older people at home – either to prevent hospital admission (or
readmission) or to facilitate discharge when they are ready to leave hospital –
is a key policy objective. It is also key to patient flow within the health and care
system, and part of delivering better health and wider system objectives and
targets.
However, we know health and care systems are under pressure. For example,
Figure 1 shows the overall number of days that patients in England have been
delayed in hospital once medically fit to be discharged. In September 2015,
147,738 days were delayed, over 30% more than five years previously, and
just below the peak month over this period in January 2015.
NHS England also collects data on the stated cause of the delays (Figure
2). The biggest cause in September 2010 was “awaiting completion of
assessment” at 19.2%, by January 2015 (the month with the highest overall
level of delayed days) awaiting assessment was still accounting for 17.5% of
delays, but by then the largest cause of delay, accounting for close to 1 in 4
(24.1%) of all delays, was “awaiting further NHS non-acute assessment”.
FIGURE 1
Days of delayed discharge in England, September 2010 to September 2015
SOURCE
Analysis of NHS England (2015)
40,000
120,000
180,000
80,000
160,000
Sept
embe
r
Sept
embe
r
Sept
embe
r
Sept
embe
r
Sept
embe
r
Sept
embe
r
Janu
ary
Janu
ary
Janu
ary
Janu
ary
Janu
ary
May
May
May
May
May
Nov
embe
r
Nov
embe
r
Nov
embe
r
Nov
embe
r
Nov
embe
r
Mar
ch
Mar
ch
Mar
ch
Mar
ch
Mar
chJuly
July
July
July
July
2011-12 2012-13 2013-14 2014-15 2015-16
10HELP THEM HOMEThe challenges facing families of older patients
Over the course of this year, this has dropped back a little, in September
accounting for 18.7% of delays. The largest growth in cause of delays
between September 2010 and from the peak in January 2015 was “awaiting
care package in own home”, growing from 11% in September 2010 to 14% in
January 2015 and again to 17.7% in September.
Behind the system issues and the growing workforce and funding pressures
in acute hospitals, there are human stories (Oliver, 2015). Healthwatch
England’s recent report, Safely Home (Healthwatch England, 2015) details
the experience of patients and their families who felt that their discharge
from hospital was unsupported, premature or “marooned in acute beds
unable to move on” (Oliver, 2015). This echoes previous reports from Age
UK, the National Institute for Health Research and the Royal Voluntary
Service. It is stressful for all sides, with NHS hospital staff under pressure to
prevent hospital admissions, discharge patients sooner to free up capacity,
whilst unprecedented cuts in local government and community services
have reduced the capacity of social care to cope and support patients with
complex needs in the community.
In this context, understanding how people cope at home when older relatives
are released from hospital and helping support them in doing so is ever more
important, for their health and their relatives and the efficiency and outcomes
of the health and social care system.
FIGURE 2
Causes of delayed discharge in England, September 2010 to September 2015
20%
60%
100%
40%
80%
Sept
embe
r
Sept
embe
r
Sept
embe
r
Sept
embe
r
Sept
embe
r
Sept
embe
r
Janu
ary
Janu
ary
Janu
ary
Janu
ary
Janu
ary
May
May
May
May
May
Nov
embe
r
Nov
embe
r
Nov
embe
r
Nov
embe
r
Nov
embe
r
Mar
ch
Mar
ch
Mar
ch
Mar
ch
Mar
chJuly
July
July
July
July
2011-12
Awaiting public funding Awaiting further non-acute NHS care
Patient or family choiceDisputes
Awaiting residential home placement or availability
Awaiting nursing home placement or availability
Housing - patients not covered by NHS and Community Care Act
Awaiting care package in own home Awaiting community equipment and adaptations
2012-13 2013-14 2014-15 2015-16
11HELP THEM HOMEThe challenges facing families of older patients
WHAT WE ALREADY KNOW ABOUT PATIENT DISCHARGE
Last year Royal Voluntary Service published its report, Going Home Alone
(Royal Voluntary Service, 2014) which sought to understand the experiences
of hospital discharge from the perspective of older patients whether they were
discharged too early or too late, and how much and what type of support
there was at home on discharge.
The patient survey was instructive and identified a link between discharge
and future readmission to hospital. Figure 3 shows patients’ views on the
timeliness of their discharge. Over a quarter of those who were readmitted
within three months said they had not felt ready to go home at the time of
their first discharge, compared with only 5% who were not readmitted within
three months. This is a strong warning sign: some patients feel they are being
discharged too early and there may well be a link between this and high
readmission rates.
SECTION 3
FIGURE 3
Patients’ views on appropriateness of discharge and relationship with readmission within three months
Readmitted within three months
Not readmitted
I felt well enough to have been discharged
earlier
13%
57%
26%
12%
81%
I felt I was discharged at the time that
was right for me
I felt I was released before I was well enough
to go home
Don’t know/ I can’t remember
2%4%5%
12HELP THEM HOMEThe challenges facing families of older patients
Figure 4 shows patients’ views on whether there was enough support on
discharge. This suggests readmission is closely related to whether or not
individuals actually receive the support they feel they need. Amongst those
who were not readmitted, only 17% indicated they had not received all of the
support they felt they needed but of those who were readmitted, this figure
was more than double at 41%.
FIGURE 4
Patients’ views on whether there was enough support on discharge and relationship with readmission within three months
Readmitted within three months
Not readmitted
All of it
59%
8% 8%8%
83%
Most of it About half Just a little
4% 4%2%
13HELP THEM HOMEThe challenges facing families of older patients
Finally, figure 5 shows that in all eight areas of support covered by the
research, at least half those respondents who required support in these areas
felt they required it for a period of longer than six weeks. This applied to both
those who were readmitted within three months and those who were not
readmitted.
Going Home Alone was followed by a survey of nurses involved in patient
discharge to gain a better understanding of the process. These findings
are consistent with the messages from patients. In particular, almost 70%
of nurses reported that they frequently have to delay discharging patients
because there is no support in place for them once they leave hospital,
and 35% have discharged patients aged over 75 before they felt they were
ready to leave hospital in order to “free up a bed”. Finally, about 75% of
those nurses questioned think pressures on the NHS could be eased by
working alongside charities and volunteers to ease the transfer of older
people back home.
FIGURE 5
Patients’ views on duration of support required for those who were readmitted within three months
More than 6 weeks following discharge
4 - 6 weeks following discharge
2 - 4 weeks following discharge
First week following discharge
Day of discharge
Can’t remember
Getting to the shops
Preparing meals
Collecting prescriptions
Getting out to meet friends and
family
Getting to the shops - readmitted
Preparing meals -
readmitted
Collecting prescriptions - readmitted
Getting out to meet friends and
family - readmitted
14HELP THEM HOMEThe challenges facing families of older patients
THE EXPERIENCES OF FAMILY MEMBERS
The new research identified the experiences of adults with older parents over
the age of 75, in England, Scotland and Wales. Our results are based on
1,000 respondents, 600 from England and the remainder equally split from
Wales and Scotland. Our results in the section “looking into the future”
are based on all 1000, while those on “the hospital experience” and
“care and support at home” are based on the 640 for whom at least one
parent had experienced an inpatient stay within in the last five years.
We asked respondents to answer based on the specific episode with the
longest length of stay within those five years. This is likely to improve recall,
its specificity, and be a challenging and non-trivial event for the parent
and family.
THE HOSPITAL EXPERIENCE
Length of stay and visiting
Given our focus was on the longest period in hospital, it is unsurprising
that the average length of stay was just over two weeks, at 15 days.
This length of stay implies that most respondents’ parents had a serious
acute or chronic medical condition. Most patients received significant
numbers of visits, an average of 10 across the sample from respondents,
and most patients received visits from a range of people. Figure 6, shows
that seven in 10 patients received visits from between three and 10 people,
though a significant minority were visited only by one or two people
including the respondent.
SECTION 4
FIGURE 6
Number of people who visited
parent during their hospital stay
1 or 2 3 to 5 > 106 to 10 Don’t know
10%
30%
50%
20%
40%
15HELP THEM HOMEThe challenges facing families of older patients
Seven in 10 respondents felt that the visits patients received were very or
fairly regular. However, 13% of respondents stated that visits were rare
or non-existent, due mainly to travel problems including living too far away,
or poor relations between child and parent.
Delayed and premature discharge
The large majority of respondents thought that their parents were discharged
when they were well enough and in a timely manner (Figure 7). Less than five
percent thought their parents were delayed when they were well enough to
go home, this is commensurate with NHS England’s national level data which
suggests that around three percent of overall bed-days in hospital are filled by
patients well enough to leave. However, two in ten thought their parent was
discharged too early.
Moreover, we know from Going Home Alone (see Figure 3) that patients
who thought they were not well enough to be discharged were over five
times as likely to be readmitted within three months as those who thought
they were well enough to go home at discharge. Premature discharge is
therefore a big challenge to the long-term sustainability and efficient working
of the NHS and care system. Patients and their families are concerned about
leaving hospital too early and this has little known, and potentially large cost
implications for the system which are under-researched.
FIGURE 7
Level of confidence with the
timing of the hospital discharge
and its appropriateness
I believe my parent was
discharged when they were
well enough and at the
right time
I believe my parent was
discharged too early before
they were well enough
I believe my parent was well
enough to be discharged
earlier than they were
20%
60%
100%
40%
80%
16HELP THEM HOMEThe challenges facing families of older patients
The majority of respondents, 84%, thought that hospital staff had a good
or quite good understanding of their parent’s personal circumstances before
they were discharged. However, this still leaves a sizeable majority feeling that
staff were not knowledgeable. Moreover, three in 10 said that staff did not
enquire with them about their parents’ personal circumstances and how this
may affect their care needs. Those who had been asked by staff were over
twice as likely to report a good understanding of personal circumstances than
those who had not been asked.
Most significantly, there is a strong relationship between being asked about
personal circumstances and about confidence in the hospital’s decision
to discharge. In particular, those that had been asked about their parent’s
personal circumstances were almost two and a half times more likely to
think that their parent was discharged appropriately compared to those that
weren’t asked. However, they were also over three times more likely to think
that their parent was well enough to be discharged earlier than they were
compared to those that weren’t asked.
17HELP THEM HOMEThe challenges facing families of older patients
Summary of the Hospital Experience
§ Most patients were visited frequently by their offspring and wider family
and friends. However, a significant minority received rare or no visits,
often due to travel or relationship problems
§ For offspring, premature discharge is a much bigger problem than
delayed discharge, 19% of respondents thought their parents were
discharged too early. Given the association between premature discharge
and readmission, this may also be leading to preventable costs.
§ Although most offspring thought hospital staff had a good understanding
of patient’s personal circumstances, 29% said that staff had not had a
conversation with them about this, or how it affected care needs.
§ Most significantly, those that were asked about their parent’s personal
circumstances were over twice as likely to report that their parent’s
discharge was appropriate.
18HELP THEM HOMEThe challenges facing families of older patients
CARE AND SUPPORT AT HOME
In contrast to views on care received in hospital, a large minority, one in four
respondents had concerns about the level of care available at discharge.
These concerns were greatest when their parent were also carers to a spouse
or partner (half of respondents whose parents were also carers had concerns),
followed in order by those whose parents were living in a care or nursing
home, and those living with the son or daughter or living alone.
Level of care required post-discharge and views on appropriateness of discharge
For those who had concerns, the leading cause was that they felt more care
should be provided. Around one in five said that their parent would have to
provide as well as receive care, and around the same percentage didn’t feel
that they were able to cope with looking after their parent.
There was a very strong relationship between views on concerns about the
level of care available on discharge and concerns about whether parents
were discharged appropriately. Those who felt their parent was discharged
prematurely, were almost eight times more likely than those that didn’t have
such fears, to have concerns about the level of care available at home.
Although over half of respondents who had concerns about post-care
discharge voiced their concerns, almost as many didn’t, with the majority
wishing they had (Figure 8). When asked why they didn’t voice their concerns’
the majority said they didn’t feel knowledgeable enough to comment with
many also trusting what the doctors said, or thought “it would work out in
the end”.
19HELP THEM HOMEThe challenges facing families of older patients
Amount of care required and received
For those parents that required support, around six in 10 respondents helped
regularly or “a bit”, a further 15% said that their parent didn’t require help
from them. This leaves over one in five respondents saying that they weren’t
able to help (Figure 9). Further, just over one in five respondents “felt guilty
about not being able to do more”.
When asked about possible help that they or family members could provide
in the future, less than half the respondents thought that they or other family
members would be able to provide help for sure and 23% said they definitely
wouldn’t without external help.
FIGURE 9
Care availability
post-discharge from offspring
Yes, I helped regularly Yes, I helped a bit No, I wasn’t able to help They didn’t need help
10%
30%
20%
40%
FIGURE 8
Reasons why offspring did not
voice concerns about
post-discharge care
Yes No No, but I wish I had
I trusted what the
doctor said
I didn’t feel knowledgeable
enough to comment
I thought it would work
out in the end
Other - please state
10%
30%
50%
60%
20%
40%
20HELP THEM HOMEThe challenges facing families of older patients
Summary of Care and Support at Home
§ One in four respondents had concerns about the care received by their
parent post-discharge, with the majority feeling there was not enough
care received, and key concerns about them also being a carer for their
spouse or partner.
§ Over half of respondents had concerns about post-discharge care, but
many felt unable to share those concerns with staff for a combination of
reasons including a perceived lack of knowledge and sense of “doctor
knows best”.
§ Those who felt their parent was discharged prematurely were almost
eight times more likely than those that didn’t to have concerns about post-
discharge care.
§ Many respondents helped their parents regularly and some said their
parents didn’t require help. But one in five people felt guilty about not
being able to do more.
21HELP THEM HOMEThe challenges facing families of older patients
LOOKING TO THE FUTURE
Respondents were also asked about their views on where future care
responsibility would fall within the family, with most feeling this would fall
on themselves or their siblings. A minority, around 10%, felt they would need
some external assistance from beyond the family network.
Importantly previous experience of care is clearly related to future
expectations about being able to cope. People who felt they were able to
offer their parent good care on discharge, were also more confident about
not requiring external care in the future. Similarly, those that didn’t feel
their parent got enough external support for the reported experience were
more likely to say they required external support after any further hospital
admission and discharge.
Given existing cuts, rising demands and restrictions on funding going into
social care it is unlikely local authorities will be able to continue to keep up
with demands. We therefore asked respondents about the sort of care they
may be able to provide in the future (Figure 10).
Just under seven in 10 respondents said they would be able to provide some
care in their own home for their parents while they recovered from hospital.
Almost 45% said that they could do this “as long as necessary”, with a further
25% up to three months. However, 31% said they couldn’t accommodate their
parents at all.
FIGURE 10
Willingness and ability to
accommodate parents in own
home whilst they recovered
from hospital
Up to one monthUp to one week Up to six weeks Up to three months
As long as necesssary
I wouldn’t be able to accomodate
them at all
10%
30%
50%
20%
40%
22HELP THEM HOMEThe challenges facing families of older patients
Although most people’s family networks are very or fairly strong and resilient
to looking after older relatives, around one in four respondents had relatively
weak networks and some no family network at all (Figure 11).
Again, looking to a future hospital episode, respondents were asked which
statements applied to them. Many respondents either lived too far away, or
work and family commitments would make it hard for sons and daughters to
provide the care they thought their parent would need. Three in 10 worry they
will not be able to offer all the care that their parent would need.
Despite 45% of people saying that they would be willing to accommodate
their parent in their own home for “as long as necessary”, people were
more pessimistic when asked a direct question about long-term care and
whether they would consider putting up older relatives in their own homes
rather than in care homes. “Would you or someone in your family be in
a position to do this for your parent?” 34% replied no, 37% maybe, and
slightly under 30% yes.
FIGURE 11
Perceived strength of family
network in relation to caring
for an older relative
Very strong Fairly strong Not very strong Non-existent
10%
30%
20%
40%
50%
23HELP THEM HOMEThe challenges facing families of older patients
Summary of Looking to the Future
§ Although the majority of respondents had strong family networks which
would help them cope with caring for older relatives without external help,
a large minority – over 30% had weak or non-existent networks to help
them do so.
§ 30% of respondents said they would not be able to accommodate their
parents if their parent had to recover from a hospital episode.
§ In response to a question about whether families would consider putting
up older relatives in their own homes as opposed to care homes, less than
30% responded that either themselves or others in their family would
definitely be in a position to do so for a parent.
FIGURE 12
Whether families would consider
“putting up older relatives”
as a substitute for care homes
Yes Maybe No
10%
30%
20%
40%
24HELP THEM HOMEThe challenges facing families of older patients
CONCLUSION AND SUMMARY
The health and care system is under severe pressure, with restrictions on
funding going into social care. This impacts on care and means that good
transition between services and home is ever more important for the health
and wellbeing of older patients, and for the efficient running of the system.
This report finds that most families are willing and able to provide most, if not
all of their parents’ care, but a clear minority who need at least some support
to cover a gap left between rushed and pressurised health services and
reduced social care provision.
Whilst in hospital most patients are visited frequently by offspring and wider
families and friends but a significant minority are visited rarely or not at all,
often due to transport problems. We find that, many families are finding
premature discharge a problem. This reinforces the findings from Going
Home Alone, which showed that those patients who perceived they had been
discharged too early, were much more likely to go on to be readmitted to
hospital again within the next three months. This premature discharge issue is
a problem for patients, families and the system.
There is also a significant issue with communication between clinicians
and family members around discharge. Again, although most offspring
thought hospital staff had a good understanding of their parents’ personal
circumstances at home, close to a third said staff hadn’t talked to them
directly about them or how they affected needs post-discharge.
The care received post-discharge was much more likely to cause concern,
than that received in hospital. One in four respondents had such concerns,
with the top issues being about the amount of care received, and about
parents having to go back home and themselves deliver care for a spouse
or partner.
SECTION 5
25HELP THEM HOMEThe challenges facing families of older patients
This reinforces the point about premature discharge and communication
within the hospital setting about the discharge process, families that had
been asked about their parents personal circumstances were over twice as
likely to report that their parent’s discharge was timely and appropriate.
Unfortunately, around half of respondents who had concerns about post-
discharge care, had felt unable to share those concerns with staff for a
combination of reasons including a perceived lack of knowledge and sense of
“doctor knows best”.
There is also a strong link between views on premature discharge and views
on post-discharge care, those feeling their parent was discharged prematurely
were almost eight times more likely than those that didn’t to have concerns
about the post-discharge care they received – clearly some people leave
hospital too soon for families to get services and wider help in place.
Whilst most people were able to help their parents regularly following
discharge, 20% said they felt guilty about not being able to do more.
Looking to the future, the majority of respondents had strong family networks
which would help them cope with caring for older relatives without external
help, but a large minority, over 30% had weak or non-existent networks to
help them do so.
26HELP THEM HOMEThe challenges facing families of older patients
RECOMMENDATIONS
Given that many more family members, and from our earlier work Going
Home Alone, former patients, are concerned about premature discharge
compared to delayed discharge, this needs to be taken more seriously by
health and care system leaders.
Clinicians need to talk directly to patients’ families about their personal
circumstances post-discharge, since we find this in itself is associated
with perceptions of appropriate discharge. Better and more consistent
communication is likely to lead to more appropriate care packages,
including the contribution of volunteers.
One in four families had concerns about the post-care discharge their
parent received, including the amount of care they could give and
concerns for parents who were carers themselves. Volunteers can help,
offering support to families and carers, who themselves have left hospital
to go back to caring roles.
Looking forward, many families are worried about their ability to offer the
care needed if their parents are admitted to hospital in future. Although
many families have strong family support networks, over 30% do not.
With existing cuts and restrictions on social care, Home from Hospital
services are likely to be needed more than ever. There are important
questions about how those services will need to adapt, change and scale
up to help meet that challenge.
27HELP THEM HOMEThe challenges facing families of older patients
THE SIX ESSENTIALSRoyal Voluntary Service believes that no older person should have to leave hospital unaccompanied and without
support unless they choose to. We have identified the Six Essentials we believe every older person should be entitled
to experience when they leave hospital. Ensuring these are in place, will improve the discharge process and more
importantly, will help older people to get well sooner.
Every older person should be told the plan for their return home from hospital
Every older person should be accompanied home before 10pm from hospital unless their preference is different
Every older person needs to be able to collect their prescriptions and get to follow up appointments for a speedy recovery after a stay in hospital
Every older person should come home from hospital to a warm, well-lit house with someone asking how they are
Every older person should know they’ll have help to get some shopping in and won’t have to sit hungry after a stay in hospital
Every older person should have a friendly face to turn to for help after a stay in hospital
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28HELP THEM HOMEThe challenges facing families of older patients
REFERENCES
Ham et al (2013) Integrated care in Northern Ireland, Scotland and Wales: Lessons for England. London:
The King’s Fund. http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/integrated-care-in-northern-
ireland-scotland-and-wales-kingsfund-jul13.pdf
Healthwatch England (2015) Safely home: What happens when people leave hospital and care settings?
http://www.healthwatch.co.uk/sites/healthwatch.co.uk/files/170715_healthwatch_special_inquiry_2015_1.pdf
NHS England et al (2014) Five year forward view https://www.england.nhs.uk/wp-content/uploads/2014/10/
5yfv-web.pdf
NHS England (2015) Delayed Transfers of Care Data 2015-16. Available from https://www.england.nhs.uk/statistics/
statistical-work-areas/delayed-transfers-of-care/delayed-transfers-of-care-data-2015-16/
Oliver, D. (2015) Improving hospital discharge and intermediate care for older people. London: The King’s Fund
http://www.kingsfund.org.uk/blog/2015/10/improving-hospital-discharge-and-intermediate-care-older-people
Royal Voluntary Service (2014) Going Home Alone: Counting the cost to older people and the NHS
http://www.royalvoluntaryservice.org.uk/Uploads/Documents/Reports%20and%20Reviews/Going_home_alone.pdf
The Scottish Government (undated) Reshaping Care for Older People: A Programme for Change 2011-2021
http://www.gov.scot/Topics/Health/Support-Social-Care/Support/Older-People/Reshaping-Care
Welsh Government (2014) Welsh Government (2014) A Framework for Delivering Integrated Health and Social Care
For Older People with Complex Needs http://wales.gov.uk/docs/dhss/publications/140319integrationen.pdf
Royal Voluntary Service is a registered charity with charity number 1015988 & SC038924 and is a limited company registered in England and Wales with company number 2520413. Registered office Beck Court, Cardiff Gate Business Park, Cardiff CF23 8RP.