Memorandum from Help the Hospices
1. ABOUT HELP
THE HOSPICES
1.1 Help the Hospices is the national charity
for the hospice movement. Its vision is of a world in which the
best possible care is available to all people at the end of life,
whatever their circumstances. As well as supporting hospices to
fulfil their role in caring for people at the end of life, Help
the Hospices gives a national voice to the views and concerns
of around 200 local charities, which provide the vast majority
of hospice care in the UK.
1.2 Hospice care improves the quality of
life of people living with life-threatening illness, and supports
their families and carers. It is tailored to individuals' needs
and can be provided as a day service, in a person's home, or as
an inpatient service.
2. ABOUT THIS
MEMORANDUM
2.1 This evidence was generated through
information submitted by independent charitable hospices, discussions
at a meeting of a subgroup of the Independent Hospice Representative
Committee, conversations with individuals from within local hospices
and information submitted through previous consultations with
hospices in particular through the end of life care strategy.
This was supplemented by reference to peer reviewed studies and
other pieces of research conducted by Help the Hospices, the BBC
and the National Council for Palliative Care. The response focus
on the unique experience of hospices in relation to accessing
funding from their local PCTs. Hospices experience commissioning
in a different way from many providers as their service predates
the provision and duty to provide care by the state. This situation
has created particular tensions between the state and these third
sector organisations.
3. ABOUT THE
HOSPICE MOVEMENT
3.1 The Committee's questions, in general,
presuppose that the public services under discussion originated
in, and are primarily funded and provided by, the state. This
is not the case for hospice and palliative care. These services
grew from the concern and commitment of organisations and individuals
outside of the NHS who believed there was a gap in provision that
needed to be filled. Today, despite the creation of palliative
care as a branch of medicine, NICE guidelines and commitments
from various governments over the provision and importance of
care at the end of life, there continues to be a gap between what
the state funds and what is provided on its behalf by the third
sector.
3.2 The independent charitable hospice sector
provides over two thirds of the specialist inpatient palliative
care in the UK.[138]
Alongside this is a host of other innovative services focused
on enabling people to live at the end of life. These include wide
spread "hospice at home" services—which aim to
provide the integrated holistic treatment of a hospice in a person's
home—day care services, lymphoedeama services, complementary
therapies, bereavement care and social work support. Such a range
of care has been developed in the sector to address perceived
local needs and is often innovative and ahead of work within the
NHS.
3.3 The challenge for the future of end
of life care is how to address the lack of broad strategic overview.
Hospices are local, independent organisations, and the provision
of services across the whole country is therefore beyond their
remit. Marrying the benefits of local charitable provision with
the necessity for a "bigger picture" is something that
needs to be provided from within the NHS structure. For the hospice
movement the current issue is how to work with the state sector
to improve the quality of services across all sectors, less by
transferring service provision out of the NHS but by exploring
ways in which the state provision can be enhanced and improved
in its relationship with the hospice movement. This relationship
may well and should have contractual elements but in order to
have the necessary effect on end of life care it must be something
broader and deeper.
4. What are the benefits of contestability
to the users of public services?
4.1 Have services which have been transferred
to third sector organisations shown improvements in quality?
4.1.1 As stated above addressing this question
in relation to hospice services is problematic as service provision
is less about transference to the third sector and more about
maintaining the current provision levels of services already provided
by the sector. There is evidence that the quality of care provided
by specialist palliative care providers produces better outcomes
than provision within generalist services.[139]
As the majority of specialist care in the UK is provided within
the third sector there would be a strong argument for maintaining
and extending this provision—that is where the expertise
is.
4.1.2 The voluntary ethos of the hospice
movement has also been cited as a contributing factor in the quality
of services provided (as will be illustrated later). Much of the
care provided to patients that is valued so highly are the non-medical
elements and the aspects of support[140]
which can be provided by the environments created by volunteers
within hospices and those volunteers who raise the funds that
maintain the hospice. Without these external inputs the quality
of provision provided by the hospice would not be as high and
the unique atmosphere would be much diminished.
4.2 Is loss of accountability a threat of
commissioning services? If so, how can this best be managed?
4.2.1 The current gap in government funding
has implications for the control and accountability which can
be demanded by commissioners which is perhaps why commissioning
arrangements rarely take the form that would be considered best
practice according to government guidelines. Recent research by
Help the Hospices[141]
found that a majority of respondents did not have service level
agreements which detailed provision of specific services or levels
of service. Most funding arrangements could be better described
as block grants distributed on an annual basis.
4.2.2 Arguably, the NHS would improve the
accountability of their funding and commissioning relationships
were they to comply with government standards and increase their
funding to the level of services they are actually receiving.
Such a change would enable the hospice movement to continue to
expand and innovate services in the manner which historically
they always have. In the context of the hospice movement there
is currently little likelihood of contestability becoming a viable
service delivery mechanism as funding is so low that there is
rarely room for more than one provider. Service users are much
more likely to benefit from strong relationships between the state
and third sector that would serve to distribute knowledge and
finances more evenly.
5. Is the third sector more likely to provide
better public services than the state or the private sector?
5.1 Is there evidence that where services
are provided by the third sector, that they are popular with those
that use them?
5.1.1 There is an acknowledged deficit in
research on hospice and palliative care which is currently being
addressed through various routes.[142]
Of the evidence which is currently available there is much which
points towards the preferences of individuals to be treated in
a hospice setting, for example a BBC survey[143]
found that there was a 97% satisfaction rate among people whose
loved ones had received hospice care. Evidence from such surveys
as Catt et al (2005)[144]
demonstrate that people would prefer to be treated in a hospice
at the end of life rather than a hospital. This preference increased
with age. Similar evidence was established through a recent Help
the Hospices survey.[145]
However, few distinguish between an NHS hospice and a charitable
hospice and it is difficult to assess whether this preference
is informed by the charitable status of hospice services or by
the value of the specialist palliative care provided.
5.1.2 It is clear that hospice care is very
often preferable and also popular with the general public. Yet
the lack of an accurate comparison within the NHS makes it difficult
to quantify whether services are more popular inside or outside
of state provision. However, there are many qualities within the
hospice which are particularly strong because of its charitable
nature. For example the role that volunteers play, which has been
estimated economically as contributing £112 million a year
to the operation of hospices[146],
can be seen as correlating with some of the qualitative value
which users highlight as important eg supportive environments.
Such environments can be difficult to replicate within the NHS.
5.2 Is there evidence of demand for more services
to be provided by the third sector? If so, who from?
5.2.1 There is evidence of greater need
for hospice type care. Many hospices have waiting lists for their
services while others are actively engaged in partnership activities
to spread their expertise and knowledge to places such as care
homes and hospitals. The type of care that is provided within
the voluntary sector is often the type of care which people most
value.[147]
Therefore, there would be a strong argument for expanding or transferring
this model of care so that a greater number of people can access
it.
5.2.2 Currently there are some significant
inequalities in access to hospice care.[148]
This tends to be drawn down the lines of disease (most hospice
care is still provided to cancer patients) age (there is evidence
that older people do not access hospice care) and certain ethnic
groups where the barriers to entry seem to be higher than others.
Addressing these issues and providing more equitable access to
the highest standard of palliative care should be a high government
priority.
5.3 Do public services provided by the third
sector more accurately reflect the changing needs of those that
use them?
5.3.1 There are some specific challenges
in formal application of user involvement techniques in palliative
care.[149]
Hospices and their staff have been anxious about burdening people
with such obligations at a time when they are likely to be under
great stress and physically quite weak. However, much has been
done in recent years to promote the possibilities of user involvement
in palliative care, not least through national initiatives instigated
by Help the Hospices.
5.3.2 While formal user involvement may
still be in relatively early stages within palliative care there
has long been a tradition in the hospice movement of responding
to the specific needs of patients:
"Palliative care, particularly as reflected
in the hospice movement, has always emphasised the centrality
of the patient or service user and its own `holistic' approach
to provision and practice ... It has traditionally placed an emphasis
on `voice and choice', ideas which have subsequently gained a
key place in health and care more generally".[150]
This tradition of patient centred care is very
important to the value which users experience and is enabled by
the presence of volunteers and higher staff-to-patient ratios
than inside the NHS. Furthermore, the retention of staff within
hospices helps to enable needs to be more easily identified over
time and change adopted where appropriate than in an NHS system
which may rely more heavily on formal process to identify need
and enact change.
5.4 Is there evidence that contracting to
the third sector leads to greater scope for innovation in public
service delivery?
5.4.1 One of the strengths of the hospice
movement as a collection of voluntary sector organisations is
their ability to innovate with greater ease than the NHS. When
ideas emerge the relative flexibility of hospice budgets, (they
may be able to call on reserves or access one off grants for new
work) the commitment of staff and volunteers, and their place
within local communities often means that they are able to create
and deliver innovate services which could not emerge as easily
within the NHS. Such flexibility though can be significantly compromised
when income streams are uncertain. The current environment where
government funding lacks stability (English hospices on average
receive 33%[151]
of their funding from government but this contribution varies,
sometimes is not agreed until well into the financial year and
has a great level instability associated with it)[152]
has an effect on a hospice's potential to innovate. Innovation
is likely to occur more often where stable funding can be found
outside of government sources. Where this is not possible, innovation
can be compromised as a result of the unwillingness of commissioners
to assure funding for the recommended three year period. However,
the hospice movement has always seen its role as being one of
innovation to meet the gaps in need that exist within their communities.
5.4.2 One such example is Grove House in
Watford. The hospice has developed a Volunteer Befriending, Home
Sitting and Complementary Therapy service for patients with cancer
or other progressive illnesses. The service offers support to
both patients and their carers to enable them to maintain their
independence at home or to support their wish to die at home.
The service was initially developed via a pilot scheme to ascertain
the needs of the local population. There was already a statutory
service providing a sitting service, but they were deemed less
responsive and were not specifically trained in palliative care
issues. The service is now available seven days a week, 8.00 am
to 8.00 pm with 35 volunteers and a further eight joining the
service in April. The service has completed over 600 visits and
receives referrals received from adult care services, GP's, Macmillan
nurses, district nurses and a variety of health care professionals.
5.4.3 The service could not have been provided
without initial funding from Macmillan and the support of the
hospice's board of trustees. It would not be sustainable without
the support provided by the volunteers. The hospice believes that
it is down to its charitable status and the reputation of the
charity within the local community locally that has created such
a strong commitment from their volunteers.
6. Does commissioning benefit the third sector?
6.1 Will contractual relationships with the
state improve stability within the third sector?
6.1.1 Contractual relationships which truly
reflected the activity hospices carried out on behalf of the NHS
would make an enormous difference to stability. Currently funding
can fluctuate from year to year, with hospices having very limited
notice that they may need to make up a shortfall in government
funding if they are to keep services open. Commissioning is not
done on the basis of what services the hospice actually provides
for local PCTs but instead the most common relationship is the
equivalent of a block grant, often awarded with little or no consultation
with hospices. Many hospices would welcome formal three-year contracts
based on activity with service levels relating to the provision
they actually deliver. Such contracts would mean they could effectively
plan reducing the risk of investing in new ideas and services.
6.2 Will close involvement with service provision
prevent third sector organisations retaining the ability to be
critical of government?
6.2.1 There are a range of approaches and
views within the movement regarding the ability and desirability
of hospices being critical of the Government. This diversity can
be attributed to a number of factors although it would appear
that there are no hard and fast rules. Hospices in general feel
more comfortable in their capacity to criticise central government
but there is far less appetite to criticise locally. Hospices
perceive the need to maintain good relations with those from whom
they have a direct funding stream and direct criticism is likely
only to occur where relations have significantly broken down.
6.2.2 Those hospices with strong finances
and few concerns about generating charitable income streams would
seem to feel more comfortable adopting a critical role of government
than those heavily dependant on government contributions.
6.2.3 Distinctions have also been drawn
between the types of criticism that it might be possible for local
hospices to engage in. While some would consider their criticism
to be significantly constructive offering to take over services
they believe they could provide better, sharing knowledge and
educating government providers. This is contrasted against criticism
which, while not exclusive from the role of imparting knowledge
and education, campaigns more explicitly for the Government to
ensure their provision is improved, be that through better in-house
services or better funding of existing hospice services. These
different approaches may be seen to reflect the variety of engagement
which different hospices would believe is appropriate. While some
wish to stand quite distinct from government others believe their
charitable aims are better served by working more closely with
the state.
6.2.4 All hospices have an important role
to play in the policy process as outside experts. The very need
for their existence is a criticism of government and their continuing
work and independence serves as a contrast and a source of knowledge
and innovation for government services.
6.3 Is there a risk that the service providers
will become increasingly bureaucratic?
6.3.1 A distinction should be drawn between
the proximity of hospices to government subjects them to greater
bureaucracy, or whether the proximity will make them more bureaucratic
organisations. While it seems unlikely that hospices would increase
their own levels of bureaucracy what they are subject to could
pose risks. These risks depend on the role which regulation plays
in the relationship between the state and third sector organisations.
6.3.2 Hospices, in providing the types of
services regulated by the state, have found the burden of regulatory
bureaucracy increase in recent years to a level many feel is inappropriate.
The regulatory burden on hospices includes those standards applied
to the NHS, those necessary under law as independent providers
of healthcare, those in their role as service providers to local
PCTs and requirements under charity law. This level of bureaucracy
is not within the control of hospices and would, to a large extent,
exist whether they received significant NHS funding or not.
6.4 Is there a risk that third sector organisations
will lose their independence, their identity or their distinctive
ethos?
6.4.1 Closer engagement with the state always
poses risks for the sector. However, the erosion of the distinctive
hospice culture would take a considerable amount of time. Many
aspects of a hospice's operations distinguish it from similar
care provided within the NHS, for example, the number of volunteers,
the specialist and holistic nature of the work, the role of the
trustees and the links developed with the local community through
fundraising and education. Such elements make it less likely that
closer financial relationships will compromise the distinctive
identity of hospices.
6.5 Might the third sector become polarised
between large service providing organisations and more radical
groups? If so, would this matter?
6.5.1 There is a genuine risk of polarisation
within the hospice movement when it comes to government engagement.
The burden of regulation alone has had an impact on the different
ways in which hospices operate. Some are able to employ individuals
to collate the required reporting and regulatory information while
others find that their chief executive or senior clinician has
to do the work. Such situations could be seen as likely to intensify
if the government was to require hospices to "professionalise"
in certain ways to win government funding.
7. Does commissioning services from the third
sector have any benefits for the state?
7.1 Does the state risk losing control of
service delivery in a way which might be damaging?
7.1.1 Currently commissioners have very
little control over the use of the money invested in hospice care.
From information generated by Help the Hospices[153]
it would seem that funding is rarely based on services and far
less frequently based on activity levels. There are some instances
where specific requirements at a local level have been addressed
through joint ventures, yet similarly local need is sometimes
addressed by hospices acting alone, taking the financial burden
and risk and delivering the kind of care they deem appropriate.
Several examples exist of hospices acting to open new beds where
local demand has increased or needs identified by a local PCT.
However, where this has happened the PCT may have little say over
how those beds are used as they do not have contractual relationships
and have not specifically commissioned the service.
7.1.2 Formalising contractual relationships
far from reducing the lines accountability could enhance or even,
in some instances, create them.
7.2 What capacity will the state need to ensure
that it can be an intelligent customer of services?
7.2.1 It is difficult to describe current
commissioners as customers of hospice services. They rarely directly
fund specific activity although they may specify the hospice services
they are contributing towards. They could better be described
as donors in their relationship to hospices. To become more "intelligent"
customers they would first have to truly become customers of the
services they are receiving.
7.2.2 The commissioning process for hospices,
as stated, does not, in reality, result in clearly commissioned
services. In this context questions regarding the monitoring process
or the bureaucratic burden become difficult to answer. In a context
where services were being commissioned in an appropriate manner
a more thorough monitoring process might need to be developed—although
to minimise bureaucratic burden this should fall in line with
other monitoring and reporting requirements—but in the current
environment, contractual relationships tend to be kept to a minimum
with some hospices finding they see PCT commissioners only for
a brief annual meeting to award funding for the coming year.
8. What are the financial implications of
providing services through the third sector compared with directly
provided state services?
8.1 Are services cheaper to provide?
8.1.1 The services currently provided by
hospices on behalf of the state are much cheaper than if the services
had to be provided by the NHS because the NHS is not paying the
full cost of those services.
8.1.2 There is evidence that suggests that
integrated holistic interventions in palliative care have the
net effect of reducing costs[154]
(through fewer acute admissions and the resilience people gain
from high quality bereavement services) although this evidence
is by no means conclusive. However, there is little to compare
it to within the NHS and therefore it is difficult to assess whether
the same service provided within the NHS would produce similar
outcomes.
8.1.3 If instead comparisons are drawn between
defined services, for example a NICE compliant palliative care
inpatient bed, it is still difficult to determine which service
is cheaper. While hospices have a clear understanding of what
a service costs them and the break down of the costs within that
total, the NHS rarely seems to be able to provide comparable data
when asked. Hospices are left to make comparisons via proxies.
For example, one hospice, when asking to compare the price of
their inpatient bed with that in their local PCT, was told the
cost of a specialist head injury bed. Not only was the hospice
bed cheaper, the NHS bed did not take into account a proportion
of capital costs. However, such comparisons are no substitute
for considering like with like.
8.2 Are there "hidden costs" such
as contract oversight?
8.2.1 The costs, hidden or otherwise, of
hospices engagement with the state has been highlighted above.
One of the most significant costs which may not have been explicitly
stated is the time and effort which it costs hospices to determine
or access funding from their local PCTs. Although such work and
activity may vary from hospice to hospice there is a sentiment
that the effort required to access funds reduces the value of
the income to the hospice.
February 2007
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