3 Resources, support and other issues
Community
resourcing
109. In the Five Year Forward View, NHS England state:
Support and aftercare and end of life care-which
improves patient experience and patient reported outcomes-will
all increasingly be provided in community settings.[104]
110. In their written evidence, however, the Royal
College of Nursing suggest that while much public debate and attention
has been given to the need to shift care from acute to community
settings, not enough resources are being invested in the community
to make this a reality for most patients. They cite district nursing,
a specialism within community nursing which includes end of life
nursing care in patients' homes, as one particular area of concern.
Their figures show that there has been a 44% reduction in the
number of qualified district nursing staff in England in the last
decade; the district nursing workforce is ageing, with 60% aged
45 or over; and only five students took up graduate and post graduate
district nursing training courses in London universities in 2012.
The RCN call for a clear commitment from the Government to appropriately
fund and resource community services if the savings that could
be accrued from the acute to community shift are to be realised.[105]
111. The NCPC's Specialist Palliative Care Workforce
survey similarly reveals that specialist nursing workforce is
ageing.[106] Avoiding
a recruitment crisis will need proper planning at a national level.
112. Nursing homes with higher ratios of qualified
nurses and care assistants to patients provide better care.[107]
113. We recommend
that Health Education England and NHS England set out how they
plan to address the shortfalls in the staffing of community care
services. The Committee sees this as essential to enabling people
to die at home and in other community settings including care
homes and nursing homes, where that is their preference rather
than in hospital. This should involve their plans for the recruitment
and training of district nurses.
Funding
114. The Nuffield Trust in its report 'Exploring
the Cost of Care at the End of Life' proposed that given the finite
resources available for health care, there should be some understanding
of the costs of end of life care, but "there is a stunning
lack of good data surrounding costs for palliative care in England."
They have carried out several studies looking at this issue and
found that the cost of end of life care provided in hospital is
significantly higher than care delivered by GPs, community nurses,
local authority funded social care and hospices. The bulk of the
hospital costs is due to emergency hospital admissions.[108]
115. In its written evidence to the inquiry the Cicely
Saunders Institute supports this:
There is early evidence that provision of palliative
care can lead to reductions in the overall cost of healthcare,
largely through reduction in hospital admissions, and reduction
in acute interventions near end of life. This is important, since
the recent Nuffield Trust report on costs of last year of life
shows that acute hospital admissions costs-largely unplanned admissions
- represent about 70% of health care costs in the last three months
of life.
116. One of the concerns raised by a number of witnesses
is the serious funding challenge faced by hospices, which threatens
their ability to provide a wide range of services. The Association
for Palliative Medicine of Great Britain and Ireland refer in
their written evidence to a report by Hospice UK published in
2014 which showed that half of hospices surveyed in England had
had their NHS statutory funding either cut or frozen in that year,
largely due to financial restrictions on NHS commissioners. Hospices
still rely to a great extent on charitable funding.[109]
117. Hospice care is not restricted to caring for
people in a hospice building. As witnesses told us, it is also
about providing specialist palliative care services to people
in their own homes and providing respite support to the families
and carers of terminally ill adults and children. The Rowcroft
Hospice explained:
As a society, we need to get away from the impression
that hospices are buildings and beds. We provide community based
services, hospice at home services and in patient unit services,
but we also provide education services that support the non hospice
providers of palliative care and care homes, and, indeed, the
hospital district nurses, that enable them to deliver end of life
palliative care services better than they would otherwise.[110]
118. While Together for Short Lives said:
We hear from families that just using the local
hospice for 15 or 16 hours to get a night's sleep so that they
can keep going is totally imperative to their daily lives. Families
will break down and local authorities will find themselves in
the position of having to take these children into care, and there
are not the resources available. It makes good economic sense
to enable funding for short breaks.[111]
119. The NCPC has said, "The Department of Health
has not yet decided what should be included in a Palliative Care
Funding currency. This is essential."[112]
Free social care at end of life
120. We know that timely access to free social care
is one of the barriers people at the end of life face when they
would like to die at home. This is due to the complexity and length
of the assessment and means-testing people have to go through
prior to accessing either continuing healthcare or social care.[113]
121. The 2011 Palliative Care Funding Review, commissioned
by the Secretary of State for Health, reported that 10-20% of
the NHS budget is spent on people in the last year of their life,
largely due to hospital admissions, and identified free social
care at the end of life as 'key' to supporting people to die at
home or in the community.[114]
122. Macmillan in their evidence state:
There are also issues accessing the social care
support that is already available. The National Audit Office has
highlighted that the process for accessing state-funded social
care is complicated, lengthy, and is separate from the healthcare
system. For people who may only have weeks to live this fragmentation
leads to delays that can prevent them receiving the care they
need to die in the place of their choice.[115]
123. NCPC said:
There is an evidence base for free, fast, social
care at the end of life, which is likely to improve the rates
of people dying at home. Some people at the end of life spend
far too long in hospital waiting for a social care package, and
in some case, even die in hospital, for want of social care support.
People at the end of life and their families want to spend their
last few weeks and days together, rather than phoning round for
a social care package to be put in place. We work with five other
national charities, Hospice UK, Macmillan Cancer Support, Marie
Curie Cancer Care, the Motor Neurone Disease Association and Sue
Ryder on this-our main call is that the financial assessment is
removed for people at the end of life. This was recommended by
the Palliative Care Funding Review, and endorsed by the Dilnot
Commission and Barker Commission."[116]
124. The National Audit Office in written evidence
to the inquiry said:
Overall, we found that only limited information
is available on the national and local costs of end of life care.
Similarly, there is a lack of detail on how the proposed new funding
arrangements will be applied.
Estimating the total cost of end of life care
is difficult due, in part, to the complexity of the funding arrangements.
The Department has not calculated the total costs of end of life
care comprehensively.
The Department and other organisations have estimated
the costs of some of the main elements of end of life care. While
not providing a comprehensive total, in 2008 the Department estimated
the costs of some of the main elements of end of life care. We
uplifted these figures to account for inflation, which produced
an estimate of £1.8 billion for 2013-14. The largest cost
element is hospital admissions (estimated at some £800 million
a year).
The current funding approach has been criticised
for a lack of transparency and inconsistencies. The 2011 Palliative
Care Funding Review commented that end of life care contracting
is "overly complicated, difficult to navigate and not joined-up
enough, leading to a lack of fairness and transparency for commissioners,
providers and patients. The system is focused on providers and
not patients. The review team [was] therefore convinced that changes
must be made swiftly to the system. [117]
125. Giving evidence, the Minister acknowledged that
the Government is still trying to pin down a workable method for
funding end of life care:
There is work under way to try to develop a tariff
for end of life and palliative care. If we can get there and do
it in a way that does not create new distortions, it would be
an advance on where we are at the moment.[118]
While NHS England referred to:
Our inability to link data up and track outcomes
across the whole system to how money is invested and what activity
by people has taken place… Linking health and social care
data is always very difficult and then, of course, because of
the means-testing in social care there are different thresholds
between different local authorities in how much money people might
be personally spending.[119]
126. Notwithstanding the complexities, the Committee
was disappointed by the lack of progress on developing a method
to calculate the cost of free social care at the end of life and
believes that developing this should be a priority.
127. In a letter to the inquiry Norman Lamb explained
that a number of Palliative Care Funding Pilots were set up in
April 2012 to collect data that would inform the development of
a per-patient funding currency model for palliative care. Although
the pilots collected data on the costs of care provided by the
organisations who made up the pilot sites, they did not offer
an estimate of the total spend across the NHS. From July 2013
the pilots also began collecting social care data. The aim of
the additional data collection was to understand at per-patient
level the costs of providing social care to people who were also
in receipt of specialist palliative care.
128. Whilst the data has provided some material,
further information outside the scope of the pilots is likely
to be needed to properly cost a policy of free social care for
people approaching the end of life. In particular, the pilots
were unable to collect data on self-funded social care linked
with periods of NHS specialist palliative care, partly because
this data was not routinely collected by local authorities.
129. Many witnesses to this inquiry have also pointed
out the inconsistency around health care being free at the end
of life, so that a patient in a hospital or a hospice does not
pay for his or her care; but because social care is not free,
someone who spends time in a care home in their last days must
find the money to pay for end of life care. This is at best confusing
and inconsistent, at worst a barrier to people getting the care
they need.
130. The NHS Continuing Healthcare Fast Track Pathway
was developed to ensure that people with complex care needs, including
a rapidly deteriorating condition that may be entering a terminal
phase, are supported in their preferred place of care as quickly
as possible. The Clinical Commissioning Group takes responsibility
for commissioning and funding appropriate care, merging health
and social care funding where appropriate. If the person receiving
services through use of the Pathway is expected to die in the
very near future, the CCG continues to fund their care package
until they die.[120]
131. In written evidence from the Association for
Palliative Medicine of Great Britain and Ireland (APM) we have
been told that access to services through the CHC Fast Track Pathway
is inconsistent across the country. APM members report that seemingly
appropriate applications are being rejected and people are being
advised that the funding does not exist.[121]
A lack of clarity around who is eligible for access to services
via the Fast Track Pathway could act as a barrier to many people
who might wish to apply.
132. We were disappointed that the Government was
unable to provide our inquiry with the latest figures on how much
money is spent annually on specialist palliative care. The most
recent assessment was made in 2011 when the Palliative Care Funding
Review. It is important to have this information, firstly, to
be able to identify if hospices will be unable to provide services
and need to turn seriously ill people away because they are unable
to raise the necessary funding to support the needs of people
in their communities; and secondly, to have an understanding of
the likely cost of providing free social care at the end of life.
133. In correspondence to the Committee subsequent
to his giving oral evidence, the Minister told us:
The Committee was also interested in the amount
spent annually on specialist palliative care in England and requested
an update on the 2011 figure of £450 million spent on specialist
palliative care by primary care trusts.
Unfortunately, I am unable to provide you with
an update on the quoted figure as the spend on specialist palliative
care by Clinical Commissioning Groups is not collected centrally.
I understand from NHS England that although the
Palliative Care Funding Pilots collected data on the costs of
care provided by the organisations who made up the pilot sites,
they do not offer an estimate of the total spend across the NHS.
However, I am aware that the Review of Choice
in End of Life Care has considered costs of care as part of its
work. The Review's advice to Government is due to be published
shortly.
134. We
recommend that the Government clarify the eligibility criteria
for the NHS Continuing Healthcare Fast Track Pathway and phase
out the social care means test (financial assessment) for people
at the end of life.
135. This Committee
strongly recommends that the Government provide free social care
at the end of life to ensure that no one dies in hospital for
want of a social care package of support.
136. We recommend
that the Government set out what it intends to do to ensure sustainable,
long term funding for the hospice sector as part of their response
to the Palliative Care Funding Review.
137. We recommend
that the Government ensure that their proposals for the future
funding of palliative care fully recognises the importance of
the voluntary sector.
Bereavement support
138. The ONS carries out the National Survey of Bereaved
People, known as VOICES and commissioned by NHS England.
The aims of the survey are to assess the quality of care delivered
in the last three months of life for adults who died in England
and to assess variations in the quality of care delivered in different
parts of the country and to different groups of patients. The
last survey found:
When asked whether they had talked to anyone
from any support services since the death, most respondents reported
that they had not, and did not want to (68%). However, 18% said
that they had not, but would have liked to.[122]
139. Evidence to the inquiry from Macmillan refers
to the experience of the people who care for those who are dying
and the impact it has on them:
Dying is rarely done in isolation and usually
it involves families and friends. We are concerned, however, that
across the wider UK, bereavement support is currently very fragmented
and inequitable. Bereavement services and support is rarely a
priority for service providers and there is little support in
the system. It is not regarded as a health problem unless it manifests
itself physically or mentally. There is a need, therefore, to
raise awareness of the needs of the bereaved and issues related
to pre-bereavement for individuals and families when someone knows
they are dying. Specific barriers to improving bereavement support
include:
· Professionals
are unaware of the presence of their role in bereavement support
and lack knowledge of other services.
· GPs
are not informed of bereavement or may be unaware of how bereavement
can affect individuals.
· There
is a lack of services available around bereavement including specialist
services.
· There
is a lack of pastoral support in schools and in the workplace.
· Individuals
do not identify their own needs and do not seek help. They are
rarely identified and rarely signposted to support.[123]
140. The Association for Palliative Medicine of Great
Britain and Northern Ireland also told us that bereavement services
are not consistently provided across the country and are often
funded by charities. People who care for dying friends and relatives
need support in the time before the person's death and afterwards,
and special care may be required for those who experience particularly
complicated grief, including children.[124]
If carers witness poor care and themselves receive inadequate
communication around a relative or friend's illness and death
this can compound their loss and make it harder for them to come
to terms with the death.[125]
141. The first national strategy for children's palliative
care-Better Care, Better Lives-was published in February
2008.
Whilst it is acknowledged that some parallels
can be drawn between the principles applying to end of life care
services for adults and those for children, it needs to be emphasised
that there are also significant differences. For example, there
are a wide variety of childhood conditions causing death before
adulthood, many of which are rare. The time span of children's
illnesses may also be different from adults, meaning that palliative
care extends over many years. Moreover, children continue to develop
physically, emotionally and cognitively, and this affects both
their medical and social needs, as well as their understanding
of disease and death. Above all, a child's death remains emotionally
difficult, unnatural and unexpected for families and healthcare
providers alike."[126]
142. The National Bereavement Alliance's written
evidence explains that children who are bereaved of a parent or
sibling are more likely to have clinical rates of mental health
difficulty, may underachieve at GCSE and have a greater risk of
poor health behaviours.[127]
143. Norman Lamb said, "The problem with all
of this is that it is not just the dying person, but the person
left behind, the loved one, who then lives with that awful experience
for the rest of their life; we have a responsibility to them as
well… making sure people have access to bereavement counselling
is also very important." [128]
144. Bereavement
support provision is currently fragmented, with services not consistently
provided around the country. Family members and carers are too
often left inadequately supported. We recommend that the Government
and NHS England raise awareness amongst health and social care
staff of the impact of bereavement and provide for universal access
to bereavement services in its funding plans for palliative care.
Measuring quality of care
145. The End of Life Care Strategy makes it clear
that good information on palliative and end of life care is necessary
for patients and carers to be able to make informed choices about
their care.[129] This
is also essential for clinicians, commissioners and policy makers
to be able to plan services and assess the quality of care.
146. In order to drive improvement in end of life
care there needs to be a validated set of measures which are directly
related to patient outcomes. This will allow an assessment of
the different models of care being developed around the country,
particularly in light of the phasing out of the Liverpool Care
Pathway, and proper evaluation of the difference that end of life
and palliative care interventions are making. At present, while
service providers may be recording data on use of palliative and
end of life care, there is no mechanism for compiling the information
and making it widely accessible.
147. Witnesses giving oral evidence to the Committee
remarked:
There was one major difficulty with the Liverpool
Care Pathway, which was that it was about measuring processes.
It did not measure outcomes. What I mean by outcomes is the difference
made to people's health or well-being… It is only if we show
the difference made to pain management, breathlessness management
and other difficult symptoms, and improvements in emotional well-being
and family support, that we can show these things are making a
difference.[130]
If we were able to collect and measure data about
the treatment or care that people receive through particular services,
we would then be able much better to measure what the impact and
effectiveness of those services is.[131]
148. We are aware that Public Health England (PHE)
is consulting on options for introducing a new national collection
of data from specialist palliative care, which they propose will
be aligned with the information standard for electronic palliative
care co-ordination systems (EPaCCS).[132]
PHE will establish a number of pilots to test the feasibility
of the proposed dataset.
149. The CQC acknowledge that there is a role here
for them as the sector regulator:
One of the things we need to be able to do is
to raise the profile, measure what is good, publish what is good
and then drive improvement through shining a spotlight. That is
certainly what we at the Care Quality Commission are doing.[133]
150. We
recommend the development of outcome measures for palliative care.
These must be properly evaluated and funded in order to improve
the quality of care for people at the end of life.
Research into Palliative and
End of Life Care
151. Witnesses to the inquiry expressed concern that
there is a lack of research evidence to inform the development
of models for early identification of those people who would benefit
from receiving palliative care and how to deliver palliative and
end of life care services to non-cancer patients. We were told
that just 10p in every £100 spent on health services research
is devoted to palliative and end of life research.[134]
152. In their evidence the Childhood Bereavement
Network stress that better data collection is needed on the number
of children who are bereaved of a parent, seriously hampering
service development and planning. They estimate that approximately
33,000 dependent children (under 18 years old) are bereaved of
a parent each year, bringing change and challenge into their lives
which can be devastating.[135]
153. The Government has provided information to the
inquiry on the consultation carried out by the Palliative and
End of Life Care Priority Setting Partnership, facilitated by
the James Lind Alliance. This work has identified ten research
priorities that matter most to people who are approaching the
end of their life, their families and carers, and health and social
care professionals:
· What
are the best ways of providing palliative care outside of working
hours to avoid crises and help patients to stay in their place
of choice? This includes symptom management, counselling and advice,
GP visits and 24-hour support, for patients, carers and families.
· How
can access to palliative care services be improved for everyone
regardless of where they are in the UK?
· What
are the benefits of Advance Care Planning and other approaches
to listening to and incorporating patients' preferences? Who should
implement this and when?
· What
information and training do carers and families need to provide
the best care for their loved one who is dying, including training
for giving medicines at home?
· How
can it be ensured that staff, including healthcare assistants,
are adequately trained to deliver palliative care, no matter where
the care is being delivered? Does increasing the number of staff
increase the quality of care provided in all settings? To what
extent does funding affect these issues?
· What
are the best ways to determine a person's palliative care needs,
then initiate and deliver this care for patients with non-cancer
diseases (such as chronic obstructive pulmonary disease (COPD),
heart failure, motor neurone disease (MND), AIDS, multiple sclerosis,
Crohn's disease, Parkinson's disease, dementia, and stroke)?
· What
are the core palliative care services that should be provided
no matter what the patients' diagnoses are?
· What
are the benefits, and best ways, of providing care in the patient's
home and how can home care be maintained as long as possible?
Does good coordination of services affect this?
· What
are the best ways to make sure there is continuity for patients
at the end of life, in terms of the staff that they have contact
with, and does this improve quality of palliative care? Would
having a designated case coordinator improve this process?
· What
are the best ways to assess and treat pain and discomfort in people
at the end of life with communication and/or cognitive difficulties,
perhaps due to motor neurone disease (MND), dementia, Parkinson's
disease, brain tumour (including glioblastoma) or head and neck
cancer, for example?
154. Norman Lamb said: "We recognise that it
is a priority to do that work, and the fact that we have met and
identified what the priorities for further research should be
is indicative of that recognition. Of course, you also need good
quality research proposals coming forward, but the fact that we
have set out what the priorities need to be will, hopefully, encourage
good, robust propositions to come forward."[136]
155. We recommend
that the Government pursue the research priorities that matter
most to people with terminal illnesses, their families and carers
and the staff providing care professionally to them, and set out
what funding will be provided to ensure that future policy on
palliative and end of life care is informed by a robust evidence
base.
Leadership
156. Evidence provided to the Committee for this
inquiry ventures that clear leadership on end of life care is
lacking at the centre of Government, which suggests that it is
not being treated as a priority. The NCPC commented:
Our experience is that end of life care is too
easily forgotten by decision-makers. For example, it was only
included in the NHS Mandate for 2014-15 as a result of concerted
lobbying (it had not been mentioned at all in the draft Mandate).
It has been only briefly mentioned in the recent Five Year Forward
View for the NHS, in a case study, with no priority being given
to it … End of life care should be core business for the
NHS, but is not being treated as such.[137]
The thing we have consistently struggled with
is lack of importance being attached to palliative and end of
life care. It would be good if a poor experience of care at the
end of life could be seen as a never event within the NHS.[138]
157. The Sue Ryder charity also express concern at
the failure of the NHS's key document, which sets out its future
direction, to provide leadership on end of life care:
End of Life has also been impacted by the loss
of the End of Life Care Programme… Leadership now lies with
the National Clinical Director for End of Life Care whose resources
are much diminished in comparison. Despite much activity around
end of life, it is still not being sufficiently acknowledged by
government, with no end of life care direction being provided
within the Five Year Forward View from NHS England.[139]
158. We believe it is vitally important that the
Government should provide clear leadership on care of the dying
to ensure that models of best care are replicated around the country.
In a Written Statement on 26 February 2015, responding to the
Choice in End of Life Care Programme Board's Review of how the
quality of end of life care could be improved by giving people
greater choice,[140]
the Minister for Care welcomed the Review's advice and noted that
it is in line with the ambition set out in the Five Year Forward
View.[141] The advice
from the Programme Board reflects many of the recommendations
we have presented in this report.
159. The Five
Year Forward View sets out a direction of travel for the NHS in
England, covering all the major statutory bodies. The Department
of Health and NHS England should ensure that end of life care
is prioritised and embedded in future planning at all levels.
They should identify named individuals who will be responsible
for ensuring that the new approach to end of life care, based
on the Five Priorities, is delivered nationally.
104 NHS England, Oct 2014, Five Year Forward View Back
105
ELC 28, page 3 Back
106
ELC 47, page 7 Back
107
ELC 30, para 7.1 Back
108
Nuffield Trust, Sept 2014 Exploring the Cost of Care at the
End of Life 2014 Back
109
ELC 36, page 2 Back
110
Q70 Back
111
Q96 Back
112
ELC 47, page 11 Back
113
ELC 47, page 12 Back
114
Palliative Care Funding Review, July 2011, Funding the Right
Care and Support for Everyone Back
115
ELC 42, para 4.5 Back
116
ELC 47, page 12 Back
117
ELC 93 Back
118
Q198 Back
119
Q207 Back
120
Department of Health, Nov 2012 (Revised), Fast Track Pathway
Tool for NHS Continuing Healthcare Back
121
ELC 36, page 4 Back
122
ONS, July 2014, National Survey of Bereaved People (VOICES)
2013 Back
123
ELC 42, para 11.4 Back
124
ELC 36, page 2 Back
125
ELC 90, page 5 Back
126
Department of Health, Feb 2008, Better Care, Better Lives Back
127
ELC 68, para 9 Back
128
Q242 Back
129
Department of Health, End of Life Care Strategy, 2008 Back
130
Q28 Back
131
Q24 Back
132
Public Health England, Mar 2015, Individual-Level Data Collection
From Specialist Palliative Care Back
133
Q9 Back
134
Q14 Back
135
ELC 61, para 3 Back
136
Q224 Back
137
ELC 47, pages 6-7 Back
138
Q8 Back
139
ELC 44, para 2.2 Back
140
Choice in End of Life Care Review Board, Feb 2015, What's Important
to me: A Review of Choice in End of Life Care Back
141
House of Commons, Written Statement (HCWS301) Back
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