No time to lose

Changing the trajectory for people living

with long-term health conditions

November 2022

No time to lose: changing the trajectory for people living with long-term health conditions
The Richmond Group
of Charities
The Richmond Group is a coalition of health and care charities working together
to help people living with long-term, multiple or complex health needs to live
well and thrive.

This report draws together data, insight and patient stories from The Richmond
Group’s 12 member charities, with wider evidence, about the impact of the pandemic
on people living with long-term, chronic or complex illnesses, who were amongst the
hardest hit and still now find themselves lagging far behind in terms of recovering
their health and well-being. Our analysis highlights the issues for this group of people
before the pandemic, the impact of the pandemic and cost-of-living crisis, and the
ongoing and long-term effects.
Foreword
Duleep Allirajah, CEO
The Richmond Group of Charities

We are facing one of the most challenging periods Chronic illness and multi-morbidity were (and remain)
in health and social care in living memory. NHS and the main challenge for the NHS and social care, as for
social care services are working harder than ever systems across the economically developed world.
before. At the same time, demand is rising fast, and The overwhelming strain, particularly across primary
faster than we might have reasonably expected care, has put care continuity at risk. At a time of crisis,
back in 2019. it is easy to forget those people who benefit most from
relationship-based care. And people living with chronic,
Against this backdrop there are immense workforce complex illness and disability are not rare. About 26
challenges across both health and social care, that million people in England alone have at least one long-
have escalated in the past few years at an alarming term condition.
rate. We are witnessing in real time the impact of a
decade or more of capital underinvestment in estates On top of all of that, we are now plunging headfirst
and infrastructure. into a cost-of-living crisis. This will of course bring its
own problems for people managing long-term health
Public and patient frustration is at a high-water mark conditions, adding to the challenges staff and patients
perhaps last seen in the 1990s. Professional morale is face as they are still reeling from the pandemic. Let’s
at the lowest point anyone can recall. not forget that many of these people are themselves
working in the NHS and social care and not coping.
The impact of the last few years has been profound. Workforce wellbeing must be a priority. These
While many of the trends we explore in this report challenges are interconnected and cannot be solved by
are not new, they have been exposed, exacerbated focus on urgent and emergency care or elective care
and accelerated by the pandemic, putting us on a backlogs alone. Short-termism cannot pay down the
fundamentally different trajectory. debt we are accruing against the nation’s future health.
To avert this downwards spiral, so we need to get on
The number of people now sitting on an NHS waiting top of what is driving demand.
list for care – a staggering 1 in 8 of the total population
at the time of writing – is just the tip of the iceberg, Government and national system leaders will need to
however. What has been less well documented, and take immediate action to relieve the pressures on the
the subject of this report, is the deep and enduring health and care system and see us through the next
impact of the pandemic on the group of people living 12 months. At the same time, in order to put care on a
with long-term, chronic or complex illnesses who were sustainable footing, the very real underlying challenges
amongst the hardest hit and still now find themselves outlined in this report – workforce, social care, health
lagging far behind in terms of recovering their health disparities – must be tackled. Doing nothing is not an
and wellbeing. This group includes, but is not limited option. Indeed, failure to act will lead to adverse social
to, those identified as clinically vulnerable and advised and economic consequences in the future. We hope
to shield. the evidence in this report can help system leaders to
take stock and rethink the design of health and care
There is a much wider group of people living with services over the next few years, informed by a more
chronic ill health that have experienced similar realistic understanding of what the population needs
challenges, losing contact with social networks, will be.
frightened to leave their homes or receive care within
them. People who have lost routine contact with the So many people have lost so much time already.
services, support groups and social activities across There is no more time to lose.
health, social care and the voluntary sector that they
rely on to keep well and manage their conditions.

For some people, the impact of the pandemic means

they will not recover their previous state of health. Others
are facing a much worse prognosis than would otherwise
have been the case. As always, the burden is falling
hardest on those in the least advantaged circumstances.

No time to lose: changing the trajectory for people living with long-term health conditions
Contents

1. Before the pandemic 5

Rising real world demand 6
Living with long-term conditions 8
A struggling health and care system 9
What does this mean? 10

2. The pandemic 11
The impact of the pandemic on people’s health 12
Challenges managing long-term conditions and keeping well 17
What happened to treatment and care? 19
What does this mean? 22

3. Where are we now? 23

The NHS and social care 24
People living with long-term, multiple or complex health conditions 27
What does this mean? 29

4. Looking to the future 30

Bibliography 31
 1. Before the pandemic

The first chapter of this report explores demographic and systems trends across health
and social care in the years leading up to the COVID-19 pandemic.

It is clear that levels of umet need were already rising in the decade leading up to 2020. Primary
care and community services were increasingly stretched, leaving a growing number of people
struggling to access routine or urgent care. Social care had been in a more or less perpetual
state of crisis as successive governments failed to grasp the nettle on sustainable funding or
reform. As a result, levels of unmet need amongst older and disabled people had been rising
steadily. Waiting lists for elective and diagnostic care were also growing and patients were
waiting longer to be seen.

In part, this is due to demographic changes. A population growing older, coupled with rising
numbers of people of all ages living with long-term or complex health conditions, means demand
for health and care services had, and will continue to, increase. Meanwhile, efforts by the NHS
and local authorities to respond to these changes - most recently in the form of the 2018 NHS
Long-term Plan and implementation of Integrated Care Systems - have been hamstrung by a
lack of investment in long-term workforce planning and capital investment. At the same time,
there have been a number of ‘false dawns’ for social care, as reforms were promised and then
failed to be delivered.

All of this had real world consequences for people’s health and wellbeing.

5 No time to lose: changing the trajectory for people living with long-term health conditions
 Before the pandemic

Rising real world demand Societal factors changing how we live and work
are often detrimental to our health. The start of the
21st century saw the first generations that needed to
Our population is ageing. It always bears repeating make a conscious decision to build physical activity
that when the NHS was founded and the origins of our into daily life. Societal changes, including fewer manual
adult social care system established more than seven jobs, longer commutes, and growing dominance of
decades ago, one-in-two people died before they technology at home and at work, meant physical activity
reached 65. In 2019, as we headed into the pandemic, was increasingly designed out of our lives. At the same
there were around 12.4 million people aged over 65 time we have seen major changes in food manufacturing
in England (or 1 in 5 of the total population).1 The and provision.
prevalence of nearly all long-term conditions increases
with age.2 As a result, the number of people living with long-
term conditions has increased. In England, 43% of the
Life expectancy and healthy life expectancy gains population has at least one long-term health condition8,
have stalled. From the beginning of the 20th century, while over one in four – or 14.2 million – adults in
England experienced continuous improvements in England live with multiple long-term conditions.9
life expectancy. But from 2011 onwards improvement
slowed, almost grinding to a halt for much of the
population and even falling for the poorest 10% of
women. At the same, there has been no significant
improvement in healthy life expectancy, while measures
In 2016,

20%
of disability-free life expectancy indicate people are in people in the
fact spending more time living with disabilities and poor UK were an
health over the course of their life.3 estimated
less active than
More people are living alone and ageing without in the 1960s10
children. A growing number of people – especially older
men – are living alone, with single person households
increasing 6% between 2008 and 2018 alone. Nearly
half of those living alone were aged 65 years and over,
and more than one out of every four were aged 75 years
and over.4 Meanwhile, an estimated 25% of women The percentage of adults who are
born in the 1970s will not have children, compared with overweight or obese rose from

53% 64%
just 1 in 10 of those born in the 1940s.5

More people are providing more unpaid care for

family and friends. The 2011 Census found there were to
6.5 million carers in the UK. By 2019, this had increased in 1993 in 201911
to an estimated 8.8 million adults.6 There is also strong
evidence that people are caring more intensively, with
the reported numbers of hours of care provided per
week increasing particularly amongst those providing

1 4
‘round the clock’ care.7

in

adults in England
8.8 million carers
in the UK in 2019 (14.2 million people)

live with multiple

long-term conditions

6 No time to lose: changing the trajectory for people living with long-term health conditions
 Before the pandemic

Many people’s health needs have become more Together, these trends translate into greater demand
complex too. Living with multiple conditions, frailty for all types of health and care services. Pre-pandemic,
and/or disability typically leads to greater challenges people living with multiple long-term conditions accounted
managing long-term health. Physical health and mental for an estimated two thirds of outpatient appointments and
health are also reflexive, with those living with physical inpatient bed days, 70% of all health and care spending
health conditions more likely to develop a mental health and half of GP appointments.16
condition and vice versa.12
Without careful management, multiple or complex
health needs are also associated with more intensive
use of healthcare, particularly urgent and emergency
People with diabetes are twice care. Research has found that people who frequently
as likely to have depression13 attend A&E make up less than one per cent of England’s
population but account for more than 16% of A&E
attendances, 29% per cent of ambulance journeys, and
people with dementia 26% of emergency hospital admissions.17

9 in 10
have more than one other
long-term condition.14

5x
People with
musculoskeletal
conditions consult
their GP five times
Almost half more often than
of people with a heart, lung or those without.18
mental health condition also have
a musculoskeletal condition

by the age of 65. 15

The hardest hit

Although numbers of people living with health There are clear ethnic and regional patterns
conditions has been rising across the board, some that emerge from this picture as well.
communities still carry a far heavier burden of poor
health than others. • People from Pakistani, Bangladeshi and black
Caribbean backgrounds have higher levels of
• People living in the least advantaged areas can diagnosed illness than people from white ethnic
expect to have two or more conditions by the age backgrounds.21
of 61, while those living in the most advantaged
typically reach this milestone a decade later at an • There is a north-south health divide, with people
average age of 71.19 living in the north of England experiencing a
greater burden of poor health. Chronic pain, COPD
• Not only are people in the least advantaged and cardiovascular disease account for much of
circumstances more likely to develop long-term the difference.
conditions at an earlier age, their conditions and
the impact on their health is likely to be more
severe than their more advantaged counterparts.20

7 No time to lose: changing the trajectory for people living with long-term health conditions
 Before the pandemic

Living with long-term conditions People can fall through the gaps in services. People
with multiple conditions have poorer health outcomes
and are more likely to report poorer experiences of
care and care coordination. As you acquire additional
health conditions, the challenges associated with
managing them stack up. Organising services around
“Deep down it is as if I can’t be myself. a single disease or need can fragment care and result
I am half my health and half me”. 22 in a high ‘treatment burden’ as people have to juggle
appointments and treatments for many different
conditions. People can fall through the gaps in services
because of the lack of clear accountability between
those services. Health and care professionals may not
The challenges of living with long-term conditions are communicate effectively with each other, leading to
common but far reaching. Despite living with a wide disorganised care, and even medical error. While these
variety of different health conditions and in different problems are not unique to patients living with multiple
circumstances, there are a number of common conditions, the overall burden is often greater than for
experiences for people grappling with long-term health those living with one condition.
conditions, including:23

• Loss of mobility and chronic pain

• Greater social isolation and a higher risk of “Different parts of the system do not seem
loneliness to talk to each other. The memory clinic tells
you to contact your GP and then the GP tells
• Low mood and poor mental wellbeing you to contact the memory clinic. Social
workers say that your relative should be
• Greater challenges maintaining paid employment entitled to a review, but then you can’t get
or volunteering a referral, and so on. It is like banging your
head against a brick wall.” 27

“I have fought all my life to be independent.

But when the pain started, I couldn’t. It Caring responsibilities can also take their toll on
felt in that dark period like I’d never be families and friends. Many unpaid carers are older
independent again.” 24 people or have a health condition themselves,28
something which the pressure of caring without
support can exacerbate. Before the pandemic hit, in
2018 research found that 6 out of 10 people said their
physical health had got worse as a result of caring, while
The impact of poor health can become a vicious 7 out of 10 said it had impacted their mental health.29
cycle as one problem leads to another. For example,
living with a long-term condition increases the risk of Caring can have a significant impact on people’s
loneliness. In turn the impact of loneliness on health and social life, ability to work and financial security. In
wellbeing is widely documented. It increases the risk 2019, 2.6 million people reported they had stopped work
of mortality and disability, including dementia, and the to care. A further 2.1 million reported they had reduced
likelihood of accessing the NHS in an emergency.25 their hours in order to juggle their responsibilities.30 8 in 10
carers have described themselves as lonely or isolated as
Managing multiple health needs is a much trickier a result of their caring responsibilities.31
balancing act. For instance, the more health conditions
someone has, the more medications they are likely to
take. However, taking multiple medications – known
“It’s hard work, it’s exhausting, I don’t
as polypharmacy – increases the risk of a range
think there’s a day gone by in the last
of problems including adverse side effects, drug
interactions and mismanagement.26 three years where I’ve not sat there and
cried my eyes out.” 32

8 No time to lose: changing the trajectory for people living with long-term health conditions
 Before the pandemic

A struggling health and care • Urgent and emergency care was under
increasing pressure. The number of emergency
system admissions grew 42% between 2006 and 2018,
from 4.25 million in 2006/07 to 6.02 million in
2017/18. The impact on acute hospitals was
Spending on social care stagnated over the last compounded by the increasingly complex needs of
decade, failing to keep pace with growing demand. patients requiring an admission. In 2015/16, one in
In real terms, spending on social care decreased sharply three emergency patients admitted for an overnight
between 2010 and 2015 before recovering towards stay had five or more health conditions, up from one
the end of the decade. By 2020, we were spending in ten in 2006/07.40
approximately £20bn a year – broadly the same as we
were in 2010. • Delays to discharge were impacting system flow.
In 2015/16, patients spent more than 1.8 million
extra days in hospital because of delays in their
discharge.41
Between 2016 and 2019, the
proportion of older people • Access to mental health services was a growing
issue. Despite greater awareness of the importance
living with unmet care needs of mental health care, research in 2018 found that
people severely affected by mental illness waited
33
increased from 1 in 8 to 1 in 7 14 weeks for an assessment alone, and a further 19
weeks to begin treatment.42

• Primary care and community services were

...that equates to under growing pressure, which was having a
34
1.5 million older people significant impact on timely diagnosis, routine care
and rehabilitation after an episode of ill health.

However, that still amounted to a 7% decrease in

spending per head of the adult population at a time
of rising demand.35 The total real terms cut in local
authority budgets between 2010/11 and the end of In 2016, almost half of stroke
2018/19 was £9.5 billion, at an average of £1.19 billion survivors reported
per year.36 Data from local authority returns shows that feeling abandoned after
in the period 1 April 2019 to 31 March 2020, nearly leaving hospital, with
720,000 people aged over 65 and nearly 385,000 people
the care and support
aged 18-65 requested but did not receive statutory
support to meet their social care needs.37 they received seen as
a ‘postcode lottery’43
Although NHS funding continued to increase over
the last decade, the pace of growth fell and fell short
of demand. NHS funding grew by 1.1% over the period
2009-2015, rising to 1.6% over 2014-2019. This is down
from the 75-year average of 3.6%.38 As a result, the NHS
was already showing signs of being under pressure.
The pre-pandemic diagnosis rate for
• Waiting times for elective surgery were rising. dementia was only 67%
The target to see 92% of patients within 18 weeks
of referral had not been met since March 2016, and
performance continued to decline in 2019. At the
Without a diagnosis, people are left
end of February 2020, only 83.2% of patients were unable to access commissioned
seen within 18 weeks, and there were 4.4 million support and services for dementia.44
patients on the waiting list to start treatment.39

9 No time to lose: changing the trajectory for people living with long-term health conditions
 Before the pandemic

Workforce gaps were significant and growing.

Primary care, which provides most long-term chronic
condition care, has been under sustained pressure for Making the change
many years. In 2015, there were 0.52 full-time equivalent
(FTE) GPs per 1,000 patients, but this had fallen to 0.46 A package of legislative reform was agreed
by early 2020. On average, each practice had 7,456 to address these challenges, including most
patients in 2015, which had risen to 8,922 by early recently the NHS Long-term Plan, published in
2020.45 The NHS was reporting significant shortages January 2019, setting out a 10-year practical
of clinical staff, with the biggest shortfall in nurses, programme of phased improvements to NHS
paramedics and some medical specialists. In the first services and outcomes, including a number of
three months of 2017 over 86,000 NHS posts were specific commitments to invest the agreed NHS
unfilled.46 five-year revenue settlement.

Recruitment and retention across social care services The shift to personalised care was also
became increasingly challenging over the course of starting to have an impact. Policy reforms
the decade leading up to the pandemic. Vacancy rates and implementation of universal personalised
rose from an average of 4.4% in 2012/13 to 7.2% in care were starting to improve care and support
2019/20 – a shortfall of around 100,000 staff.47 Amongst for some people with long-term conditions.
key staff, including registered managers and nurses, For example, pre-pandemic diabetes care was
vacancy rates ran at closer to 10%. generally showing positive improvement. The
proportion of people with diabetes receiving all
The maintenance backlog in NHS trusts has been eight diabetes care processes increased in the
rising, from £4.4bn in 2013/14 to over £6bn by 2017/18. three-year period before the pandemic 49
This is around double the amount of annual capital
spending in NHS trusts. Many trusts were seeing Reforms to social care were promised but the
capital-funding constraints have a direct, negative funding reforms were a long way off ‘fixing social
impact on their ability to deliver optimal care.48 care’ with workforce and funding challenges
limiting factors.

What does this mean?

By the start of 2020, NHS social care staff were working harder than ever but, despite their best efforts,
capacity could not keep pace with demand.

Older people, people living with chronic and complex illness, mental ill-health, frailty and disability
faced growing challenges accessing services, treatments and care to the detriment of their long-term
health outcomes, with the hardest hit being those with the highest needs and in the least advantaged
circumstances.

Efforts were being made to address these challenges, with a package of legislative reforms widely
supported by system leaders agreed, but still in the early phases of implementation.

Enter COVID-19, an unprecedented global public health emergency, at a time when the whole system was
running hotter than perhaps ever before.

10 No time to lose: changing the trajectory for people living with long-term health conditions
 2. The pandemic

Since 2020, our organisations have worked hard to understand the impact of the pandemic
on the people we represent. We are in no doubt that the experiences of the last few years
have fundamentally altered the trajectory of many people’s lives and, with it, the overall
health of our population. This chapter explores what we know about people’s experiences
during the pandemic, and how it has impacted people’s ability to stay well and access timely
treatment and care.

Our collective evidence is clear. The pandemic has tipped more people into a poorer state of
mental and physical health than would have otherwise been the case. And as always, the burden is
falling hardest on those in the least advantaged circumstances to start with.

Lack of access to day-to-day health services made it much more difficult to manage pre-existing
health conditions or diagnose new ones. Some avoided or delayed seeking medical attention,
including a third of those who had a stroke during the pandemic, often presenting with much more
advanced or severe symptoms as a result.

At the same time, the sudden and dramatic changes in our everyday lives left millions of people
reeling – particularly those advised they were at exceptionally high risk from the virus. Overnight,
many of the daily routines, social networks, facilities and services that people relied on simply
disappeared, sapping their resilience, and cutting off their usual coping strategies. The material
impact this had on people’s health, and that of their carers and loved ones, is perhaps one of the
most underappreciated aspects of the pandemic.

It’s still unclear to what extent many can or will recover. For millions of people this simply
represents a new and more challenging phase in their health and wellbeing, one that they will have
to live with and manage long-term. Some of this ‘need’ is sitting on a waiting list for treatment, but
much of it isn’t. A hidden ‘backlog’ is emerging, as is evident from the extreme pressure on primary
care, mental health and community services as well as across social care.

We are storing up problems for the future as well. For many individuals, the true impact on their
long-term outcomes may not become apparent for a number of years. For instance, missed
opportunities to diagnose and treat conditions like hypertension may have implications for rates
of heart attack and stroke. While the evidence on the effect of Covid-19 infections on people’s
long-term health is still emerging, it seems clear it has created an additional burden on the nation’s
health, alongside changes in lifestyle that mean we are seeing rates of obesity, physical inactivity
and harmful alcohol consumption on the rise once more.

11 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

The impact of the pandemic on One of the most striking findings of our work is
the major impact the pandemic has had on the
people’s health common challenges faced by those living with long-
term conditions – pain, fatigue, loss of mobility and
independence, loneliness and social isolation. Some
report that their health has improved as we have
emerged from pandemic restrictions and they have been
“He has Parkinson’s and dementia and this (the able to get back to ‘normal life’ but this is far from a
pandemic) has left him more vulnerable and universal experience.
weak, his legs are a lot worse. His mental health
has got worse and not having a normal routine
has really affected his health in a bad way.” 1
Hardest hit
People living in the least advantaged
communities were dealt a triple blow. Already
overrepresented in the numbers living with long-
In bringing together the research and our collective term, multiple or complex health condition at
insight, a consistent pattern emerges. People who went the outset of the pandemic, our evidence shows
into the pandemic with pre-existing conditions and they were amongst the hardest hit by pandemic
care needs are overwhelmingly reporting that it has restrictions and the impact on their health was
had a profound - and they fear long-lasting - effect on even more profound. Last but not least, they
their physical and mental health. were at greatest risk of contracting Covid-19 and
becoming severely unwell if they did.
As well as the disruption to their ongoing treatment and
care, people living with health and care needs, their Ethnic minority communities have been among
families and carers often felt there was no option but those most at risk of being exposed to and
to adopt and sustain the most restrictive measures to dying from Covid-19. Public Health England
protect themselves and their loved ones. More than has reported some of these differences are due
four million people living with health conditions were to racial discrimination, and that the associated
identified as ‘extremely clinically vulnerable’ and advised stress has a negative effect on people’s long-term
to shield. Many millions more were told they were high mental and physical health, as well as affecting
risk and should take great care to protect themselves, Covid-19 exposure risk and outcomes.3
including anyone over the age of 70 and those with
common conditions such as diabetes, dementia, COPD,
asthma and heart problems. Unfortunately for some –
particularly those living with conditions that suppress
their immune system – social distancing is still a feature
of daily life.

“The announcements kept saying it was a

Nearly 1 in 3 older people in
problem for people suffering from diabetes, less advantaged circumstances
asthma, heart conditions and the over-70s. I tick reported increased pain,
all these boxes so I started thinking there’s not
much hope for me. It was a bit scary.” 2 compared to 1 in 5 in more
advantaged.4

12 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

disruption to ‘self-care’ routines, many people living with

long-term conditions reported increased levels of pain.

Pre-pandemic, an estimated 5.5 million were living with

chronic pain.6 In 2020, 46% of people aged over 60 living
with a long-term condition reported being in more pain
than before the pandemic.7 Alarmingly, by Spring 2022
this figure had not improved, suggesting the impact is
Pain long-lasting.

Living with increased levels of pain has taken a major

personal and financial toll. In 2021, nearly two thirds
“My pain has got a lot worse. I am in my chair of people with arthritis or a musculoskeletal condition,
24/7. Some days I don’t eat as I’m in too much pain whose surgery had been delayed or cancelled due to
to be able to get up and make a meal. I virtually Covid-19, said they were living in pain because they
only get up when I need to go to the toilet.” 5 could not afford the treatments they need. Worse still,
those on the lowest incomes were more likely to be
forced to live in pain because they were unable to cover
the financial burden of the condition. 1 in 5 whose surgery
Living in pain is debilitating and has a huge effect on had been delayed or cancelled due to Covid-19 said they
someone’s mental health, activity levels and ability to often go without essentials, including food or heating, to
work or participate in activities they enjoy. Whether due to pay for treatments needed to manage their pain.
deteriorating health, delayed or cancelled treatments or

Brenda’s story8

Brenda is waiting for a double hip replacement after developing severe osteoarthritis at the end of 2019, which
has left her housebound, unable to walk and out-of-work.

“I haven’t left my house for a year now, apart from going to my hospital appointments. It’s like standing on
jagged glass. I used to enjoy swimming, running and walking my dog, but in less than six months I became
immobile because of the pain in my hips. With the pain and the pain medication comes incredible fatigue,
which is way beyond just feeling a bit tired. Then with the lack of mobility comes a significant loss of muscle
mass and overall health and wellbeing. My knees have also now started to deteriorate. Before arthritis I
worked a busy job in a London law firm, but now I can’t work, walk or drive.12 I’ve had to sell my house so I
could move into a ground floor flat without stairs. I would love to go back to my career, not just because of the
financial pressures, but to regain my normal life. This is simply impossible while I’m waiting for surgery.

“It’s not just medical bills, arthritis adds a cost to your daily life. I initially thought this was a temporary
situation, as did my daughter, so she was initially able to help me with normal day to day activities like
cooking, shopping, cleaning and dog walking. But because I’ve been waiting for so long, I can’t rely on my
daughter anymore. So along with my loss of income comes the expense of a cleaner, a dog walker, someone
to paint my fence, put pictures up on my wall… the list goes on.

I feel so helpless. Last summer I woke up crying every morning. I would get so depressed about the pain.
Without a surgery date, you’re just left hanging, thinking, ‘What am I going to do with my life?’”

Brenda received both of her hip operations by early 2022, after waiting over two years. Following an
appearance on national television, a private donor offered to pay for her first hip operation, while the NHS
provided the second. The operations transformed Brenda’s life and restored her independence. However,
the wait for surgery has left her with long-term damage, including back problems and issues with her knees.
Brenda has said she found the health system incredibly difficult to navigate, despite her high level of education
and the fact that she speaks English as a first language, and worries about how much more difficult it must be
for people who don’t have those advantages.

13 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Mental wellbeing
Mobility and independence
Physical deconditioning is a major risk older people
and people living with long-term health conditions
“Although I have a husband and family I am so
face, with it leading to increased frailty, reduced
alone. I sit and cry for no reason. My mood is so
mobility and risk of falls. This in turn compromises
low as I feel so isolated. I am now taking pills
people’s ability to work, socialise and independently
for pain and low mood.” 12
manage everyday tasks. For older people in particular,
‘use it or lose it’ is a good rule of thumb. Once someone
has lost muscle mass, cardiovascular fitness, strength and
balance, it is very difficult to recover.

It is no surprise that the pandemic and its legacy has

had a huge impact on our population’s mental health
“My mobility had deteriorated badly. I can walk and wellbeing driven by deep uncertainty, sudden and
to my gate but that’s all. Even a small amount of dramatic changes in our everyday lives, social isolation,
effort leaves me breathless.” 9 loss of financial security, a huge increase in health
anxiety and, sadly, many traumatic bereavements. A
consistent picture emerges from the research:13 rapidly
rising levels of psychological distress, particularly
depression and anxiety, at the onset of each wave of the
Older people experienced a considerable reduction pandemic and implementation of restrictions, followed
in strength and balance activity from March to May by some degree of recovery but not for everyone.
2020. This disproportionately affected older people in the
least advantaged circumstances who were more likely to People with pre-existing physical and mental health
be inactive than those amongst the most advantaged.10 conditions were amongst the most likely to see
their mental health deteriorate over this period. A
Research tracking the impact of the pandemic on large majority (79%) of people with pre-existing mental
people aged 60+ between August 2020 and March 2022 illness reported their mental health was worse or much
showed a sudden and alarming deterioration in people’s worse as a result of the pandemic.14 Before the Covid-19
mobility and independence in the first 6 months of the pandemic, one-third of people with a long-term condition
pandemic.11 Unfortunately, subsequent waves showed also had a mental health problem.15 It is highly likely that
few signs of recovery as time went on. Predictably, older this increased further during the Covid-19 pandemic.
people living with long-term conditions were most likely
to be struggling: Unfortunately, the impact on people living with
long-term conditions may prove long lasting. There
• 1 in 10 older people were finding it harder to is a well-established relationship between mental
manage essential everyday activities such as getting and physical health. However, not only does having
in and out of bed, getting dressed or washed and a physical health condition put you at great risk of
preparing meals. This increased to 1 in 5 amongst developing a mental health one, and vice versa, it can
older people with a long-term health condition. also impact on your ability to effectively manage your
health.
• 1 in 5 older people lost mobility, saying they found
it harder to get up and down the stairs or walk short
distances outside. This increased to 40% of older
people with a long-term health condition.

14 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Throughout the pandemic our organisations heard

repeatedly from the people we represent about how they
were battling low mood, depression and anxiety, and
struggling to keep going and manage their conditions
risking a long-term, possibly irreversible, decline in
their health. Nearly a quarter of people said that not
having sufficient access to emotional and psychological
support was a reason for having difficulties with
managing their diabetes, rising to one in three people in
more deprived areas.16

Social isolation and loneliness

“I’ve eaten more and have lost some control
As relationships and connections became harder to
over my diabetes. I was on a low carb diet and
maintain, loneliness and social isolation increased
checked sugar levels but now I eat anything
dramatically during the pandemic. Pre-pandemic, 1
and don’t monitor levels” 17
in 5 people reported feeling ‘often or always lonely’. By
May 2020 research found double that number (41%)
saying they were feeling lonelier since the start of the
pandemic, with 1 in 3 saying they felt like they had no
one to turn to and the same proportion saying they
hadn’t had a meaningful conversation in the last week.20
The physical health consequences for those living
with pre-existing mental health conditions are also
clear. People with pre-existing mental illness reported
significant impacts on their lifestyle.

“I’m feeling even more isolated than I did before,

and I’m just trying to hold everything together.
I’m on quite a bit of medication anyway. Feeling
“The support groups that I normally attend totally lonely and totally vulnerable, and worried
are no longer running. These groups provide about how long I can cope. All the support I’ve
a structure to my week. Having no structure had for anxiety, panic attacks and agoraphobia
means that I struggle to impose order on my life. has been put on hold.” 21
Without something to do I struggle to get up, eat
at reasonable times, avoid snacking and looking
after myself and my home.” 18

Some groups were more vulnerable to loneliness

over this period, particularly those living with pre-
existing risk factors. In common with pre-pandemic
patterns, people from ethnic minority communities,
During lockdowns...19 those living alone, people with long-term conditions and
those who were digitally excluded were all more likely to

54% of people with pre-existing mental

illness reported exercising less
experience increased loneliness.22 Unsurprisingly, people
who were shielding or managing a condition that made
them more clinically vulnerable were particularly likely to

51%
have become severely isolated.
eating less healthily

16% smoking more

23% drinking more alcohol

15 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

There is a major risk that patterns of loneliness

have become entrenched for some groups. Some “As a reasonably active senior citizen I have
people have found themselves increasingly ‘left behind’ become a lonely, introverted recluse” 24
as restrictions eased and ‘normal life’ resumed.23 The
reasons are varied. For some – particularly those
deemed ‘extremely clinically vulnerable’ to Covid-19 –
an ongoing fear of catching the virus means they have
continued to limit their social activities. For others, the
pandemic triggered long-term changes in their lives such
as bereavement, relationship breakdown, job losses
or changes in the way they work. This is compounded
for many people by the fact that many forums for “I’m getting used to being on my own/withdrawn
fostering social connections, including social clubs and and dread the thought of company” 25
community groups, have struggled to get going again.

Rob’s story26

Rob lives alone in a tower block and has been shielding during the pandemic due to having severe asthma.
Prior to the pandemic, he would socialise most nights after work with colleagues from his office, usually going
to the cinema or out for drinks. Whereas he used to feel ‘lucky to have a day alone in the flat’ by himself,
during this time he has really struggled with working from home due to the lack of face-to-face contact with
his colleagues and opportunities for socialising after work. This has resulted in regular feelings of loneliness
which he feels he rarely experienced before. He says his situation is making him feel depressed, and that he
knows his current routine of staying at home alone all day is bad for his wellbeing. He says he has ‘always
been a worrier’ and the extra time alone to ruminate has worsened his feelings of anxiety. He doesn’t know
when he will be able to go back to his office, and has found even as restrictions have eased, his colleagues
are not keen on things like going to the pub with him due to fears of the virus.

Social connection is not just important for mental

wellbeing. It also plays an important role in sustaining
cognitive capacity, particularly as we age.27 Loss of “My memory has got worse. I think this is
social connections and routines during the pandemic because I can’t meet up with people and
appears to have had a significant impact on older have a chat so I am forgetting words.” 29
people’s thinking skills. In August 2020, 1 in 5 people
aged over 60 reported they were finding it harder to
remember things than pre-pandemic, rising to 1 in 3
older people with a long-term condition.28 Concerningly, The impact on people living with neurological
although perhaps unsurprisingly, in subsequent waves conditions such as dementia has been particularly
of research this figure has not shown any improvement. profound. Many people living with dementia and their
loved ones reported that their symptoms got worse over
lockdown and their condition progressed further and
faster than they might have expected.30

In August 2020, 1 in 3
people aged over 60 with a
long-term condition reported “Mum has vascular dementia, so the loss of
finding it harder to remember routine and socialising has meant she is a lot
things than pre-pandemic.
slower mentally than this time last year.” 31

16 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Challenges managing long-term Perhaps the most underestimated impact of the

pandemic on people living with long-term conditions
conditions and keeping well was the closure of universal services and community
groups. Living with long-term conditions can be a
Managing long-term conditions became much harder for difficult balancing act and over time most people
many people during the pandemic and in its aftermath. come to rely on a range of coping strategies that work
A number of common themes have emerged from our for them. Activity classes and clubs, peer support,
collective research and insight, including the lack of community facilities such as libraries and leisure centres,
access to routine or urgent health care, loss of care and faith groups and access to green spaces all play an
support services, closure of community facilities and important role in helping people manage their pain,
groups, as well as practical problems such as getting maintain mobility and stay connected. The sudden and
hold of the right food and medication. unexpected shut down on the things people relied on
to stay well left many struggling to keep their health on
track. Unfortunately, even as we have emerged from the
Day to day services and support pandemic, loss of funding, volunteers or facilities means
many support groups have permanently disappeared.

While any support groups and services rapidly adapted

and moved online, digital exclusion means this did not
“Once lockdown came into play, everything work for everyone.34 This shift online was a particular
got worse. Firstly, getting food supplies was problem for older people and those on low incomes,
impossible in the early days... This impacted (who were most likely to be digitally excluded),35 those
further on my ability to eat the correct foods to living with conditions and disabilities that make it harder
control my blood glucose levels” 32 to engage online, and groups who typically relied on
places with access to free Wi-Fi (such as voluntary
organisations and libraries).36

Difficulties accessing food, medication and other

essentials was a widespread problem in the early days
of the pandemic. However, for people managing health “Telephone and video appointments are ok if
conditions who relied on specific diets or specialist you can hear and cope with IT. If you’re not,
foods, regular medication or medical products (such then you are cut off from what you have known
as incontinence pads or infection control products), all your life.” 37
problems getting timely access had a material impact on
their health.

Even after supply and distribution settled down for the But even amongst those who are digitally enabled,
majority of the population, the challenges persisted many people with pre-existing conditions are simply not
for many people living with long-term conditions. In comfortable with remote support, or feel it fails to deliver
particular, millions of people advised to shield or take the same benefits.
extra precautions felt they had no choice but to continue
to avoid basic activities such as shopping for food or
picking up prescriptions long after the wider population.

“I have been unable to continue with cognitive

behavioural therapy (CBT) because they
cannot - understandably - offer face to face
consultations and I do not feel comfortable
“I used to swim every day which helps with remote delivery” 38
dramatically with arthritis. I’m now crippled
and need two new knees. I don’t know how this
helps the NHS. It certainly doesn’t help me.” 33

17 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Changing lifestyles
With gyms and pools closed, a fear of catching
Covid-19, low motivation or low mood induced by the
crisis, many people turned to increasingly unhealthy
behaviours as coping strategies or to alleviate boredom. “I’m drinking too much and not
These changes in lifestyle – whether temporary or not looking after myself because my
– have put people at greater risk of poor health, now husband died of Covid-19. We had
and in the future. been together for 40 years and it
was just gone in an instance.” 40
There were already increased alcohol-related hospital
admissions and deaths before the pandemic, but
between March 2020 and March 2021, there was a
58.6% increase in the proportion of survey respondents
drinking at increasing risk and higher risk levels. This was
accompanied by an upwards trend in alcohol-related
hospital admissions and deaths. 39

Carers at breaking point

An estimated 13.6 million people were providing unpaid “It was a hard job before but now it’s
care for a loved one during the pandemic, with 4.5 becoming unbearable. There is a lot
million tipped into caring responsibilities overnight. of talk about mental health of people
This amounts to 1 in 4 of all adults across the UK. As during lockdowns. For a regular person
before, many carers are older people or have their own they only lasted a few weeks at the
health issues to contend with. time. The majority of people caring
for the severely disabled have been
on full lockdown for nearly two years.
No one seems to care or understand
“I was scared to let anyone into my the damage it is doing to families of
home in case they were infected.” 41 disabled people.” 42

Not only did the pandemic dramatically increase During the pandemic:
the numbers of carers, it made a challenging role

81%
that much harder. As with other services, much of of carers said they were
the support carers may have relied on suddenly providing more care than before
disappeared. Many carers – often caring for people
who were shielding or clinically vulnerable – felt they
had no choice but to stop receiving help at home, 78% of carers said the needs of the
person they care for had increased
particularly in the early days of the pandemic when
masks and other infection control products were hard
to buy, even for professional care services. At the same
time, carers were trying to manage deteriorating health
64% had not been able to take a break
in the last 6 months.43
and escalating needs of the person they cared for with
limited, if any, access to health services. This has taken a major toll on carers’ own health
and wellbeing. 6 in 10 carers said it had had an
impact on their physical and mental health.44

18 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Research amongst people aged over 60 found carers Unfortunately, the picture has not improved much for
were significantly more likely to report changes for the many carers since. Many face ongoing challenges
worse in their health or ability to manage everyday getting access to services and support they and
activities.45 their loved one need. A combination of permanent
reduction in or closure of services, poor quality,
unreliable or unsuitable care, or continued concerns
1 in 5 older carers reported greater
difficulty getting in and out of bed,
about infection means many are still struggling
on alone. In 2021, just 14% of carers said they had
getting dressed and washed than full access to their usual day services, while 35%
pre-pandemic.
reported reduced or severely reduced access and
20% said the service had closed.47
1 in 4 were finding it harder to walk short
distances outside or get up and
Unpaid carers are reaching breaking point. Almost
down stairs.
three-quarters of Directors of Adult Social Services
report seeing more cases of breakdown of unpaid
1 in 3 were in more physical pain than
before and felt their health had
carer arrangements in their area.48
deteriorated.

“I feel forgotten. I have given up

everything to care for my relative and
there is such little support” 46

What happened to treatment However, the failure to access timely routine or

urgent care can have significant consequences for an
and care? individual’s long-term health outcomes.

Accessing planned treatment and care

“I have liver and kidney disease which I was

getting treatment for, but it has now stopped.
I now find it difficult to eat, walk, breathe or “I have been waiting for consultant
sleep.” 49 appointments which have all been
cancelled and the focus has been
completely lost in respect of long-term
health problems.” 51

Overall, the risks to people’s health caused by the

pandemic go beyond the direct harm caused by the
virus. As NHS capacity was reprioritised to manage Evidence showed that outpatient visits, GP
the demands of Covid-19, many people saw access to appointments and medication reviews were all
their routine or planned services reduced, cancelled or lower than would usually have been the case to
postponed.50 manage multiple or complex conditions. While
those in the general population also experienced
There is also evidence that some individuals were delays for treatment, research suggests there
reluctant to access healthcare services, even in an remained a particularly high level of unmet health
emergency, either through fear of infection or out of need concentrated within the extremely vulnerable
concern about pressure on overstretched services. population.52

19 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

This is largely a reflection of the extent to which routine

care for long-term conditions was significantly
reduced over the pandemic period, with many
“Because my cancer and diabetes check-ups
health, care and wellbeing services stopped altogether,
have been cancelled, and I have been unable
particularly those that operated face-to-face. Services
to see a GP in person, I am worried that my
highlighted as particularly difficult to access included
conditions have worsened.” 54
blood tests, rehabilitation and physiotherapy, mental
health, drug and alcohol services, and rheumatology.

Access to mental health care also suffered as a result

of the pandemic. 42% of people living with a pre-
existing mental health condition reported a deterioration
in their health owing to less support from mental health
services. Access to medication was also an issue for
some, with 8% reporting that being unable to access
medication had made their mental health worse.53 “I’ve been put in touch with a pain specialist
and offered physio but when the pandemic
hit it put everything on hold. I think if I’d had
more regimented physio and face-to-face
support, I would have progressed more with
my recovery.” 55

More people are waiting and waiting for longer.

As of September 2022, there were a record 6.84 million people on a waiting list for NHS treatment in
England.56 This is equivalent to 1 in 8 people in the population. And the number is rising.

For many, this means living with symptoms that are impossible to ignore and that have a devastating
impact on their quality of life. These include chronic pain, fatigue and insomnia, all of which impact people’s
psychological wellbeing, ability to move, work and keep active. For example, people with arthritis waiting
longer than ever for joint replacement surgery are reporting a major impact on their health.

A delay in receiving timely care can also have an adverse impact on people’s health outcomes. In June
2022, official data shows nearly 4,000 people diagnosed with cancer were still waiting to start treatment
more than two months after their urgent referral, the second-highest number on record after January 2022.
Only three in five people are now starting treatment within two months of an urgent referral, compared with
the target of 85%.57

People on waiting lists for treatment

79% 89% 79% 72%

report physical health report that pain are now less report deterioration in
has got worse levels increased independent mental health58

20 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Accessing social care Across the course of the pandemic, fewer people
accessed treatment. In 2020 alone, analysis shows
that 6 million ‘missing patients’ did not seek treatment
(compared to 2019).65 Missed diagnosis or delayed
treatment mean that not only are there more people living
with ill health for longer, their conditions and symptoms
“Sometimes there is no carer due to staffing are more severe when they do obtain treatment and risk
levels at the care company, I assume due to poor long-term outcomes. We must expect the legacy of
sickness, the cleaner and the person doing his the pandemic to continue to emerge for many years to
shopping stopped coming altogether for the come.
3 months of lockdown. He has spent nights in
his chair with dirty incontinence pads, so he Diagnoses were missed, at least in part due to
now has open sores. The house is filthy and the cessation of health checks and screening.
his clothes aren’t being washed.” 59 For instance, in diabetes alone in the first year of the
pandemic, type 2 diagnosis dropped by two-thirds and
there were are an estimated 5.2 million fewer HbA1c
tests carried out. Reduced rates of diagnosis were
The impact on access to social care services is harder to particularly evident in older people, men and in deprived
quantify, however alongside the closure of day services areas.66
and wrap around support our organisations have heard
repeatedly from individuals and carers struggling to
access paid care at home. In July 2020, 41% of people
living with dementia and 48% of people living with The number of people under 80
Parkinson’s who had a paid package at home reported
receiving less care since lockdown began.60
who had their blood pressure
checked and treated dropped by
Since then, it is clear that unmet needs have increased almost a third in the first year of
as services have struggled to return to full capacity, let the pandemic.67
alone expand to meet new demand. By October 2021,
less than half of carers reported a full return of their
loved one’s home care package, with 27% still reporting
a reduced or severely reduced service.61 In 2022, a
survey of Directors of Adult Social Services found more Early diagnosis matters. If left untreated, both diabetes
than half a million people waiting for either a social and high blood pressure increase the risk of serious
care assessment, care services, a personal budget to health problems, including stroke and heart attack.
commence or a review. They also reported that during
the first three months of 2022 alone, almost 170,000 Meanwhile, we know some people delayed seeking
hours of home care a week could not be delivered emergency medical attention due to Covid-19,
because of a shortage of carers.62 One in eight older including 30% of those who had a stroke during the
people now say they are concerned about their ability to pandemic.68 In England and Wales, the number of stroke
access home care or find a carer.63 admissions fell by around 13% in April 2020, with fewer
people experiencing milder stroke presenting at hospital.
Urgent care and new diagnoses Stroke deaths in private homes were 52% higher than
usual during the Covid-19 surge.69

The pandemic has also had a very direct impact on

the health of many people. By May 2021, an estimated
1 million people self-reported being affected by Long
Covid-19 (equivalent to 1 in 5 people who tested positive
“This active and independent lady has sunk for Covid-19).70 For some people this means acquiring a
into deep depression and has been unable long-term condition for the first time, for many it will have
to access help from her GP other than tipped them (further) into living with multiple conditions.
, telephone appointments, which have resulted
in inappropriate medication being prescribed
twice…. She has ended up being admitted to
hospital via urgent care.” 64

21 No time to lose: changing the trajectory for people living with long-term health conditions
 The pandemic

Beca’s story71

Beca lives with her parents, sister and fiancée in Rhyl, and has experienced various health problems over
the last few years, meaning she has often been in and out of hospital. Her hospital appointments continued
during the pandemic, and she found that the combination of being isolated while in hospital and having
to shield while at home had a huge impact on her emotionally. While completing the diary task [for this
research], she had just started to resume some elements of her social life (as guidance on shielding was
relaxed) including visiting her nan and having a makeover session with a friend. Shortly after this, she fell
unwell again and had to return to hospital, where she was advised she had to continue shielding. She
describes this as “completely devastating” as it feels like she has taken a big step back.

What does this mean?

Despite the superb efforts of staff and volunteers across health, social care and the voluntary sector, it is
clear that the health of much of our population is in a worse place than we might otherwise have reasonably
expected. And within that population there are a group of people, predominantly people already living with
long-term, multiple or complex needs and their carers, who are now in a much worse state of health. The
consequences of this will be with us for a long time to come.

There are now higher than ever levels of unmet need manifesting across primary and community care, in
social care and mental health. As we explore in the final chapter of this report, the capacity of NHS and care
services to recover and respond to this new reality is far from assured.

22 No time to lose: changing the trajectory for people living with long-term health conditions
 3. Where are we now?

This chapter explores where we are now, the emerging challenges and the extent to which
the health and care system is equipped for the future.

With much of our population still grappling with the impact of the pandemic, we have plunged
straight into a once in a generation cost-of-living crisis. The relationship between personal
insecurity, financial hardship and health is well established. An impoverished population is not
a healthy one. We face the alarming prospect that, rather than the period of recovery we sorely
need, the next few years drive a deeper and more firmly entrenched decline in the nation’s health,
and over the long-term, the prospect of an unhealthier nation becoming a less prosperous and
productive one.

More immediately, rising costs are having a pernicious impact on people living with long-term,
multiple or complex needs. Our organisations are already seeing the direct consequences on
those we represent, with more and more reporting they are unable to heat their homes, pay for
prescriptions or care costs, run their medical devices, refrigerate their medication or maintain
their diet. The struggle to afford day to day essentials has a direct impact on people’s mental and
physical health and, ultimately, overall demand for services as a social and financial crisis too often
quickly turns into a medical crisis.

Meanwhile, it is fair to say the NHS and social care system are in their most perilous position in
memory. Pressure has been building for a number of years as the impact of long-term, structural
problems becomes increasingly apparent in delivery of day-to-day services. The pandemic
bombshell has turned cracks in the system into gaping chasms. With little time to regroup and
recover, services are now grappling with spiralling costs and further pressure on workforce
recruitment and retention.

These system shocks have occurred at a time when the NHS and social care services had hoped
to be focused on addressing their underlying challenges, and putting in place the reforms required
to adapt to a growing older population and rising number of people living with long-term, multiple
or complex conditions. Instead it is now a longer, harder road to recover lost ground and achieve
those ambitions.

23 No time to lose: changing the trajectory for people living with long-term health conditions
 Where are we now?

The NHS and social care The pandemic and cost-of-living crisis has added fuel
to the fire of long-standing workforce challenges. Around
a third of the NHS workforce are aged 50 and over 4 and
As we set out in Chapter One, a series of major
many workers of all ages are increasingly looking for
challenges had already emerged across the health and
greater flexible working, including opportunities to work
care system pre-pandemic. Rising demand, lack of
part time.5 We cannot dismiss the risk that older workers,
capital investment, workforce shortages and funding
those struggling to navigate a suitable work-life balance
constraints were long standing concerns for policy
or seeking better renumerated opportunities will vote
makers and service providers alike. We are now three
with their feet. Indeed, in April 2022 we saw a significant
years further down the track and, left unresolved, these
increase in the number of NHS staff retiring, with a 28%
issues have continued to ferment. The pandemic then
increase in the number of pension awards compared to
not only exacerbated these problems in many cases,
April 2021.6 By the year to June 2022 over 40,000 nurses
but also exhausted the time, energy and resources
had left active service.7 And now two thirds of NHS trust
that might otherwise have been directed towards
leaders say the cost-of-living is having a major impact on
improvement and reform. Rapidly rising costs driven by
their ability to recruit and retain staff, with staff leaving to
high inflation and an exodus from the workforce now
take better paid jobs in retail and hospitality.8
threaten to engulf services in yet another crisis.

Workforce

The pandemic itself had a profound human impact on the

workforce, and now the added pressure of a cost-of-living
1 in 9
crisis (impacting staff as well as patients) combined with
historic low levels of unemployment means problems have
nurses left
hit an historic high. active service
in the last year

Some NHS trusts have opened food

banks for their staff. Other measures The picture in social care is quite possibly worse.
It has long been a sector characterised by low
taken by trusts include discounted pay and poor conditions that struggles to recruit
public transport and school uniforms and retain sufficient staff. 9 However, these long-
provided to children 1 standing difficulties have been severely exacerbated by
a combination of the pandemic, cost-of-living and the
fact that in a competitive labour market pay, terms and
conditions are increasingly falling behind other sectors
– including hospitality, retail and healthcare.10 Adult
The impact of Covid-19 on health and social care
social care workforce vacancy rates are now the highest
staff has been significant, leading to stress and
they’ve been since the pandemic began.
exhaustion. In August 2021 alone, the NHS lost two
million full-time equivalent days to sickness, including
more than 560,000 days to anxiety, stress, depression,
or another psychiatric illness. The result is that many in
an exhausted workforce are considering leaving.2

“I pride myself on the level of care I provide

to my patients. However, at times I leave
work feeling deflated knowing that if I had
one less patient or there was one more nurse
on shift, those patients would have had an
even better experience that day. There is only
so much overwork, stress and heartache we
can endure before we reach breaking point.” 3

24 No time to lose: changing the trajectory for people living with long-term health conditions
 Where are we now?

“It’s dire. It’s the worst I’ve ever known it. It’s
horrendous, and actually the staff quite often
are in tears at the lack of help that we can
provide them. We’ve got families ringing us in
71% below the real living wage
of care workers are paid
11 tears, and we’re pretty much in tears, because
we’ve got nothing to offer them. In our particular
area at the moment, we have no care. We have

1 in 3 workers on a zero- no care capacity whatsoever….. we’ve put an

hours contract awful lot of burden on families, way more than
we’ve ever had to.” 18

34% annual turnover

of all care staff 12
While demand is rising fast post-pandemic, the number
of providers who are closing or handing back local
authority contracts is also increasing rapidly. In the
The cost-of-living crisis is having a direct impact past six months, 67% of Directors of Adult Social Services
on recruitment and retention of adult social care reported providers in their area had closed, ceased trading
staff. Directors of Adult Social Services across England or handed back council contracts.19 For the six months
now say an average starting wage of £12.77 an hour prior to the onset of Covid-19, this figure was 25%.
would be required to minimise – let alone reverse – local
recruitment and retention challenges. This is £3.27 Overheads are of particular concern for care homes,
more than the current national living wage rate of £9.50 with many struggling to remain viable in the face of
and is comparable to the mid-point of NHS Band 3 for the spiralling costs of energy, fuel, insurance and
Healthcare Assistants.13 food. Across the sector the lack of available staff means
many providers simply cannot meet demand for their
As of June 2022, the NHS reported 132,000 FTE services, leaving older and disabled people with nowhere
vacancies, while social care had an estimated to turn even when funding is available.
165,000 unfilled posts.14 This is in the context of
recognition that the workforce will need to grow in order Both services users and Directors of Adult Social
to meet increasing demand - with an extra 475,000 jobs Services are increasingly concerned about the quality
projected to be needed in health and 490,000 jobs in of what is still available. Two thirds of Directors report
social care by the early part of the next decade.15 that quality and choice of services in their area have
reduced compared to the pre-pandemic period.20 As we
set out in the first chapter, unmet need has been rising
Pressure on social care services steadily over the last decade. Now – as we emerge from
the pandemic – there are an estimated 2.6 million people
aged 50+ living with some level of unmet need with
one or more activity of daily living. This equates to 1 in
The impact of the pandemic on adult social care has
8 people across that population.21 This has a profound
been profound, and is far from over. More people are
impact on the health, wellbeing and independence
waiting for assessments, care and reviews. People have
of individuals with care needs and puts carers under
been faced with support being rationed and continuity of
unsustainable pressure. In the last year, three quarters
care being severely compromised.16
of Directors of Adult Social Services have reported rising
numbers of referrals and requests because of breakdown
The overall number of adults waiting for assessments,
of unpaid carer arrangements.22
reviews and packages of care exceeded 540,000 in April
2022 - a 37% increase since November 2021. There are
around 600 adults a day continuing to join waiting lists to
be assessed for care and support. At this rate, Directors
of Adult Social Services anticipate the number of adults 2.6 million people aged 50+
waiting for an assessment to double over the course
of the year (between November 2021 and November 7% of people in their 50s have an unmet
2022).17 need for care, 12% in their 60s, 15% in
their 70s, and 21% in their 80s and older.23

25 No time to lose: changing the trajectory for people living with long-term health conditions
 Where are we now?

Even pre-pandemic, the ‘winter crisis’ was a regular

Of those with an unmet calendar event as services struggled to accommodate
the normal seasonal surges in demand. But the NHS
need for care and support: now faces the prospect of the worst winter storm on
record as the mismatch between demand and capacity
1.8 million have difficulty dressing         reaches new proportions. ‘Winter’ levels of demand and
subsequent capacity challenges are now normal across
the year.
1.2 million have difficulty bathing
or showering Workforce challenges have a particular
impact on the ability to discharge
320,000 have difficulty eating patients to other settings, including the
availability of social workers to co-
600,000 have difficulty using ordinate those packages of care.28
the toilet 24

Pressures are a complex mix of increasing demand,

reduced supply, workforce shortages and challenges
The challenges in the NHS impact on adult social in other parts of the health and care ecosystem,
care, and vice-versa.25 Nine in ten Directors of Adult all impacting on the flow of people through NHS
Social Services reported an increase in the average services.
size of care packages of people being discharged from
hospital, pointing to increased complexity of need with
people being discharged earlier and/or with higher levels In the summer of 2022, many areas were
of acuity than in the past as hospitals struggle with already experiencing the equivalent adult
capacity. Around half also reported increased activity social care pressures that they would
because of a lack of community-based support or normally see in winter.29
because someone could not be admitted to hospital.26

While the numbers of people contacting NHS 111

Pressure on NHS services and phoning for an ambulance have been above pre-
pandemic levels, other measures of NHS activity have
remained at or below those seen in 2019 as services
continue to grapple with the long-term effects of the
pandemic.

“I’ve been told I’m definitely still on the waiting

list for surgery, but they can’t give me any Ongoing cases of COVID-19, increased
indication of a timeline. They just leave you
hanging, thinking what am I going to do with
complexity of patients and significant
my life?” 27 backlogs of care needs across services
all have disruptive knock-on effects
that are cumulative and can lead to a
downward performance spiral.30

Recent analysis found that to deliver pre-pandemic rates

The NHS has long been a lean service, with a low bed
of care, the NHS would require a far larger increase in
base, low length of hospital stay and a high occupancy
bed supply than we would expect under the current
rate compared with other similar countries. This means it
hospital plan. Even if the NHS makes progress on
uses resources intensively and with little spare capacity.
reducing the time patients spend in hospital, the NHS
At a time of crisis, the healthcare infrastructure is
would still need an additional 23,000 to 39,000 general
stretched to breaking point as there is simply no
and acute hospital beds by 2030/31.31
slack in the system to meet the surge in demand
alongside other essential care needs.

26 No time to lose: changing the trajectory for people living with long-term health conditions
 Where are we now?

Taken together, this picture suggests that the

Richmond Group analysis from 2018 holds true:
that for better or worse, the NHS, social care and The ‘disability premium’
public health are fundamentally interconnected
and destined to ‘sink or swim’ together.32 Pressures In 2019 the disability ‘premium’
in social care, public health and other parts of the was already an estimated
system have real and immediate consequences for £583 a month. Some of the
NHS services, driving up demand and leading to additional costs people face
postponements or cancelled appointments, delayed include: prescription charges,
handovers, admissions and discharges to and from
hospital. This all ultimately impacts negatively on people’s £583 care costs, running medical
equipment at home, extra
heating and washing costs,
healthcare experiences, access and outcomes.
a month specialist food and transport.37
Although during the peak of the pandemic the NHS was
able to pull out the stops and perform exceptionally well,
this came at a heavy cost for both staff and patients and
is not sustainable. As we look to the future, demand for
NHS services over the next decade is only anticipated to As we have set out in previous chapters, financial
grow.33 To lessen the impact of future shocks to the NHS, disadvantage and poor health often go hand in hand.
the question for policymakers must be how to plan a People living in disadvantaged circumstances are
more resilient service. more likely to develop long-term, multiple or complex
health conditions earlier on in their lives. Acquiring
Added to this, NHS England’s chief financial officer a health condition or disability, or taking on a caring
recently warned that increases in inflation will force role for someone who does, can in itself have a serious
the NHS to drastically scale back services unless the impact on personal finances. At the same time, people
government provides extra funding. Savings required managing health conditions and disabilities often face
could add up to 10 per cent of the NHS’s cost base, additional costs.38
threatening further crisis.34

People living with long-term,

multiple or complex health Carers providing more than 20
hours a week of care are 22%
conditions less likely to be in work. And
those in work earn less than
their counterparts.39

“Food prices have been rising for a couple

of years. Not just recently. Electric and home
heating oil prices have rocketed. It means
that we can only afford the basics. Heating Taken together, people living with and caring for those in
is a luxury. My wife sits with blankets over poor health are more likely to have entered the cost-of-
her as she feels the cold really badly and it living crisis in a much more precarious financial position
affects her fibromyalgia and pain levels. The and are twice as likely to report that they are now
price of bread has rocketed which is what seriously struggling as a result.
I mainly eat so I’ve had to change to the
cheapest bread. I feel trapped in the house
and in unbearable pain, and worried if and
when I can get treated.” 35 In a 2022 survey of NHS
trust leaders,

over half
The UK is experiencing a cost-of-living crisis with
real incomes falling as wages and benefits fail to reported an increase in
keep pace with rising prices. Those on the lowest safeguarding concerns as
incomes are hit hardest as essential costs such as a result of people’s living
conditions.40
food and energy already take up a larger proportion
of their income.36

27 No time to lose: changing the trajectory for people living with long-term health conditions
 Where are we now?

People living with long-term conditions or disabilities are already struggling with the
increased cost-of-living.

• People living with a long-term condition or disability are twice as likely to say they are already ‘going
under’ financially (22% in this category compared to 9% without).

• They are more likely to have already reduced essential spending, with close to half (45%) saying they
have reduced spending on things they need (compared to 35% without).

• 1 in 5 (20%) say they are already skipping meals (compared to 10% without). 41

Rising prices do not just make life more difficult

however, they can severely compromise people’s Before this year’s energy prices rises, home
ability to manage their health and wellbeing – dialysis machines already added between
particularly increasing food and energy cost. £593 and £1,454 a year to utility bills.44

Staying warm
Every year tens of thousands of people across the UK
“I try not to put the heating on now unless are admitted to hospital or die from conditions that can
absolutely necessary and I have Reynaud’s be linked to exposure to the cold – with the highest
disease. I know when the winter comes it risk amongst older people and those with pre-existing
will be awful and I am worried about this.” 42 health conditions.45 It is linked to an increased risk of
falls, exacerbation of respiratory conditions and – as
it puts more pressure on our hearts and circulatory
systems – a rise in the number of heart attacks and
strokes. Alarmingly, the effects are apparent once indoor
Affording prescriptions and medical equipment temperatures drop below 18°C.46
Most long-term conditions require regular prescription
medications and/or access to medical kit at home to
manage day to day. Even pre-pandemic, people living
on a low income regularly reported either going without “Mentally, we are extremely worried about
or rationing their medications because they could not how we will manage financially. We have done
afford the prescription charges. Lack of adherence everything we can to reduce our outgoings,
to medication is associated with increased risk of an including selling my car. We worry about
unplanned hospital admission. Some conditions also keeping warm and fed - not just the cost of
depend upon people using electrical equipment at food but the cost of cooking it.” 47
home, such as CPAP machines for obstructive sleep
apnoea, home dialysis treatment for people with kidney
disease, refrigerators for insulin and nebulisers for lung
conditions. This equipment is essential for people to
manage their health conditions but is often costly to run. Maintaining an adequate diet
Being unable to maintain good nutritional intake has an
adverse impact on people with long-term conditions. For
example, poor nutritional intake can contribute to the
“Like many people, we are very worried about development and severity of delirium - a particular risk
fuel prices. My wife and I both have breathing for people living with dementia - which in turn can lead
problems. We are going to have cut down on to a rapid decline in mental state and behaviour. Poor
our gas usage. This won’t help us at all.” 43 diet can make the symptoms of conditions including
asthma worse. People with conditions like diabetes need
to maintain specific diets to manage their symptoms,
and people taking some medications must manage their
diet to mitigate adverse interactions.

28 No time to lose: changing the trajectory for people living with long-term health conditions
 Where are we now?

Mental health clothing and bedding more frequently, having higher food
bills due to the nutritional requirements to support the
person they are caring for, and having higher transport
Unsurprisingly, the rising cost-of-living is driving anxiety, costs because the person they care for needs support to
with 1 in 2 UK adults already reporting feeling anxious travel or the carer has to travel to provide care. As day-to-
as a result of the higher prices.48 Nearly three quarters day costs have increased, carers report that they are having
of NHS trust leaders say they have seen more people to cut back on essentials and are increasingly running down
coming to mental health services due to stress, debt and savings or getting into debt to make ends meet.
poverty.49

In March 2022 - when inflation was at 9.2%

“All this (the cost-of-living crisis) has an - 58% of carers reported cutting back on
impact on both my mental and physical health. heating to manage their finances, with 14%
I find it difficult to not worry about my future. I having already fallen into arrears with their
can’t sleep and feel weary with the stress of it utility bills. 45% of carers reported relying
all.” 50 on their savings and 26% were using credit
cards to get by. 52

Carers
“I’m worried about heating the house as my
husband doesn’t go out, plus the cost of diesel
“I am anxious & scared of what our living means I won’t be able to get out as much to
costs will be in the coming months. I’m unable see friends to give me a break.” 53
to sleep and worried about surviving” 51

Growing financial pressure on carers is likely to have

Even before the current cost-of-living crisis, almost a negative impact on their own health and wellbeing
two thirds of carers were spending their own money and ability to cope with their caring responsibilities.
on care and support services or products for the Over three quarters of Directors of Adult Social Services
person they care for. Carers also reported having to say they are concerned about unpaid carers being
spend a larger proportion of their income on energy unable to cope with rising costs and believe this will
costs to keep the person they care for warm and manage result in increased need for state-funded social care.54
their condition. This as well as potentially washing

What does this mean?

The gap between people’s needs and the capacity of health and social care services to meet them is
wide and getting wider. We fear this winter will prove to be the pivotal point where the weight of that
contradiction becomes painfully apparent.

Clearly, we will need urgent action to shore up people’s health and wellbeing, make absolute best use of the
workforce we do have and be as creative as possible in how we deploy resources to maximum effect. We
are in no doubt of the collective commitment of the NHS, social care and our own voluntary and community
sector to do all we can. But it is equally clear this position is unsustainable and as we look to the future, it is
essential we fix the foundations and build a more resilient health and care system.

29 No time to lose: changing the trajectory for people living with long-term health conditions
 4. Looking to the future

Multiple, long-term and complex illnesses are the ‘new normal’, but our health and care
system has not caught up to the challenge.

There are more people living with health conditions, more people presenting with advanced or
severe symptoms, and those already living with conditions have seen their health deteriorate into
multimorbidity.

This has led to heightened demand on community-based treatment, care and support (including
primary care where much of the need washes up).

When coupled with the pandemic and now the cost-of-living crisis, those with greatest needs are
not being supported, reinforcing a vicious cycle of ill-health, chronic stress and financial hardship.
If the government is serious about levelling up as a moral, social and economic imperative, then it
must respond to this challenge.

Our current care models, skills-mix and values must change to reflect the realities that those we
serve are likely to be increasingly older and with more complex care needs. We need a plan to
get back on top of long-term condition care and routine management. This includes rebuilding
community services and joining up multidisciplinary teams, whilst boosting mental health support,
access to specialist recovery, rehabilitation, community pharmacy and social prescribing services.

All of this will reduce downstream demand on health and care services.

As well as being socially unjust, ill health is economically destructive. Poor health and widening
inequalities leave large sections of the population vulnerable to both the long-term impacts of
Covid-19 and to future health and economic shocks. The reluctance of successive governments to
address the root causes of these problems is counterproductive. Failing to manage our collective
population health and wellbeing will mean the demand on elective and emergency services rises
even faster.

With the right services and support, we know people living with long-term, multiple or complex
health needs can live well and thrive. We need to see clear and focused political leadership to make
that happen.

30 No time to lose: changing the trajectory for people living with long-term health conditions
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37 No time to lose: changing the trajectory for people living with long-term health conditions
Thank you

RichmondGroup@macmillan.org.uk

richmondgroupofcharities.org.uk

@RichmondGroupOC