Memorandum by Macmillan Cancer Relief
(OB55)
EXECUTIVE SUMMARY
Macmillan's key recommendations are that:
— Structures are put in place to provide
the training and support to enable people affected by cancer to
be involved not only in all aspects of their own treatment and
care, but also in influencing the development and delivery of
services at a strategic level. We call for increased funding to
ensure User Partnership Groups are sustained within Cancer Networks.
— Increased priority and funding are
given to practical support services (including transport and home
help), welfare support (including benefits), and support to carers
to enable cancer patients to live and die more easily at home.
— Better public information is given
about advance directives, and cancer patients and their carers
are involved in discussions about end-of-life care and enabled
to participate fully in decisions.
— Healthcare professionals receive
adequate education, training and support to enable them to discuss
ethical and practical issues around end-of-life issues (including
withholding/withdrawing treatments) confidently, sensitively and
openly.
— The draft standards for Supportive
& Palliative Care are consulted on as soon as possible, are
backed up with effective peer and user review processes, require
partnership working between health and social care, and additional
resources are identified to support the implementation of the
guidance.
— Greater priority is given to capturing
examples of good practice, rolling these out to ensure consistency,
and providing services that are sensitive to gender, age, ethnicity,
etc.
— Standards of palliative care provision
are improved in nursing and residential homes and the private
sector, and more efforts are put into working across boundaries
and ensuring care for patients is coordinated and underpinned
by a whole-person approach.
— Greater resources are put into helping
professionals manage change and redesign services around the needs
of the patients, and more help is given to patients and carers
on self-care/self-management so that they are better able to help
themselves.
— Increased priority and funding are
given to research into identified gaps in supportive and palliative
care research, and users are involved throughout the research
process.
— Increased funding is allocated to
various areas of supportive and palliative care, including user
involvement, information and support, carers, benefits advisers,
and user-led cancer care research.
1. INTRODUCTION
Macmillan Cancer Relief is a national charity
that works to provide people who have cancer, and their families,
with expert nursing and medical care as well as emotional and
practical support. The charity's over-riding purpose is to achieve
for everyone equal and ready access to the best information, treatment
and care for cancer, so that unnecessary levels of fear are set
aside.
Cancer incorporates a wide range of conditions
and a multiplicity of needs arising from both the disease and
its treatment. In the future, there will increasingly be the need
to manage a cancer diagnosis in conjunction with other diseases.
Despite the progress being made in improving early detection of
cancer, and the prediction that we will steadily become better
at treating and managing the effects of individual cancers, we
still do not have the cure. It is undoubtedly true that cancer
will remain a major cause of death and that a diagnosis (or threat
of diagnosis) will remain a cause for major anxiety for large
numbers of people for many years. As more people live for longer
with cancer their requirement for access to palliative care—from
diagnosis onwards—will remain a high priority. This has
been recognised in many health-related reports since the 1996
Calman Hine Report.
Macmillan Cancer Relief has been closely concerned
with the development, quality and monitoring of palliative care
since the charity was established at the beginning of the last
century. Appendix one describes our work in this area, ranging
from Patient Grants begun in 1911, to the Macmillan Nurse pioneered
in 1975, to Buildings, Information, User Involvement, and Postholder
Education and Support.
We welcome the progress made in palliative care
over the last 10 years. However we recognise that this is patchy
and the quantity and quality of palliative care services across
the UK is still variable. We look forward to this Committee highlighting
examples of good practice and recommending ways in which progress
can be sustained and success replicated everywhere.
2. FUTURE TRENDS
Macmillan is currently funding an Observatory
Group to advise on what cancer services should look like in 10
years' time and to highlight some of the likely trends. Those
that are most significant to supportive and palliative care are
listed below:
— An increasing number of people will
be affected by cancer, who are of different ages, genders and
ethnicity. Services will need to be increasingly sensitive to
these differences and reach out to those who are marginalised.
— People will live longer with cancer
and other conditions, and will spend longer time periods at home,
but will still experience times of acute illness and relapse.
— A greater proportion of cancer patients
will wish to be involved in day-to-day decisions about their treatment
and care and will look to health care professionals to guide them
on their choices and advise them how they can help themselves.
— Older people will be affected not
just by cancer, but by other diseases, such as neurological conditions,
heart disease, diabetes, etc.
— Demand for palliative care from non-cancer
patients will rise as the lessons of what has been achieved in
cancer are promoted.
— The rise in age-related disease and
demand for palliative care will be accompanied by an age-related
decline in the workforce. This is likely to alter the role between
professions, between professionals and carers, and between professionals
and self-managing patients. The healthcare of people with cancer
seems likely to be increasingly provided by primary and community
care services, social and health care services.
— There will be more pressure on informal
carers, many of whom will themselves be elderly and possibly living
with one or more chronic condition.
— The growth of single-person households
will reduce the amount of family care available.
— Complex disorders and symptoms will
be delivered by specialist palliative care experts, but the vast
majority of people will be cared for by generalists from a range
of sectors.
— Palliative care will need to compete
for resources with other interventions/technologies as new drugs,
gene therapies, imaging technology, etc come onto the market.
These will offer greater efficacy and fewer adverse effects for
patients, but they may take attention and resources away from
supportive and palliative care. Care of people by people will
be less dramatic and `newsworthy', but increasingly needed.
We look forward to this Committee reconfirming
the importance of high quality supportive and palliative care,
the priority to be given to care of people by people, and the
recognition of the roles of different professional disciplines.
3. PEOPLE-CENTRED
APPROACH
The implications of the changing demography
are that demand for palliative care for non-cancer diseases will
rise steeply, particularly when the publication of the NICE guidelines
on supportive and palliative care sets out the standards that
can be expected for cancer. The scale of the need for care for
people with non-cancer diseases is already known to be at least
as great or even greater than that for cancer. The resources currently
available cannot be stretched to meet this need and the existing
structures would require change beyond recognition. There will
therefore need to be some radical thought and action to meet this
escalating demand.
We would like to draw the Committee's attention
to an important piece of work Macmillan has recently undertaken
to document, in their language, the needs of people affected by
cancer throughout the cancer journey and at specific stages of
their journey—see Appendix Two. This document highlights
the needs of cancer patients when they are dying as follows:
"People with cancer want to die in the place
of their choice if possible, with help in accessing palliative
care services and advice on their choice of place to die. People
with cancer want careful explanations on the options of their
choice of place to die. Families need to be supported throughout
illness and in bereavement and, as far as they wish to be, to
care for the patient. People with cancer want their spiritual
needs to be met. They want to have a well co-ordinated, flexible
and responsive healthcare team to provide support with 24 hour
access, pain control readily available and help to access transport,
social care and specialist palliative care services when needed.
They need to know that their care will be planned and who their
key contact is."
We would urge the Committee to ensure that its
deliberations are guided by a patient-centred approach, and that
the focus of its work is on making sure that the above identified
needs are fully met everywhere in the UK. We would urge the Committee
to ensure oral submissions are taken from cancer patients and
their carers so that their voices are directly heard in the debate.
We also urge the Committee to ensure that adequate
structures are in place to provide the training and support to
enable cancer patients and their carers to be involved not only
in all aspects of their own treatment and care, but also in influencing
the development and delivery of services at a strategic level.
Macmillan and the Department of Health have funded the Cancer
Partnership Project to support User Involvement in Cancer Networks
in England in the form of partnership groups. The DoH funding
for these Networks expires at the end March 2004, and we are concerned
that Networks are not sustaining them. Yet our experience shows
that they are very useful groups. We have undertaken an evaluation
of the Cancer Partnership Projects to review the impact of this
model of User Involvement in cancer services. (The findings are
due in Spring 2004)
We would be pleased to see the Committee highlighting
the importance of these groups and stressing the importance of
ensuring their sustainability into the future.
4. PATIENT CHOICE
4.1 Patient Choice—Place of Death
Macmillan believes it is vitally important to
respect the wishes of patients as far as possible in enabling
them to die in the place of their choosing, surrounded by the
people of their choosing. The preference of cancer patients will
often be to die at home, surrounded by family and friends, but
far fewer people currently achieve this than wish to do so. It
is estimated that only about a quarter of cancer patients achieve
their wish to die at home, with about half dying in hospital and
the remainder dying in a hospice or nursing home. To make it possible
for those wishing to die at home to do so, the following aspects
are needed: high standards of supportive and palliative care,
better coordination between hospital and community-based nursing
teams (including around appropriate supplies of drugs), and far
greater investment in training for community healthcare professionals.
Macmillan recommends that increased priority
and funding should also be given to practical support services
(including transport and home help), and welfare support (including
benefits) to help people live at home for longer. Macmillan also
believes that priority should be given to the unmet needs of carers,
and that more efforts must be made to plan and coordinate care
and medication out-of-hours to prevent unnecessary admissions
to hospital, and thus hospital deaths, as a result of carer breakdown
and crisis admissions. See Appendix Three for Macmillan's report
"Out-of-hours palliative care in the community: continuing
care for the dying at home" (March 2001).
4.2 Patient Choice—Treatments
Macmillan is concerned that people affected
by cancer do not know what their rights are in relation to receiving
treatments. Macmillan would like to see more open discussion between
patients, carers and professionals about the options (including
the option to no longer receive treatment) and honest, sensitive
discussion about whether it may be more appropriate to receive
palliative care, rather than more chemotherapy drugs for example.
Macmillan recommends that health and social
care professionals routinely involve relatives/carers in decisions
about end-of-life care, and that the options are discussed with
patients and their families/carers as early as possible in their
illness to enable them to participate fully in decisions. It is
important to recognise that decisions will often change through
time. Decisions should then be properly documented in medical
records and communicated to all members of the care team. This
applies to all areas of withholding or withdrawing treatment,
including resuscitation which research shows is only successful
in 5% of cases of terminal illness and is often distressing for
patient and family alike. Proper communication about the issues
may result in more appropriate decisions between patients and
professionals about "Do Not Resuscitate" (DNR) orders.
Macmillan recommends that healthcare professionals
receive adequate education, training and support to enable them
to discuss ethical and practical issues around withholding/withdrawing
treatments confidently, sensitively and openly.
Macmillan welcomes the requirement in the Adults
with Incapacity (Scotland) Act 2002 that family members/proxies
should be able to make decisions on behalf of someone who is mentally
incapacitated, and would like to see this introduced throughout
the UK, but with appropriate safeguards to avoid abuse.
Macmillan recommends that better public information
is given about advance directives and patients' ability to specify
their treatment and care wishes. We believe that advance directives
are a useful tool for patients to exercise their autonomy, and
research shows they help to reduce a patient's distress knowing
that their relatives will not have to made difficult decisions
without the patient's prior guidance. However, recognising that
individual wishes frequently change as death approaches, Macmillan
recommends that healthcare professionals and patients should keep
advance directives under regular review, statements should be
made as specific and clear as possible to avoid ambiguity, and
a range of conditions/scenarios should be covered. Macmillan welcomes
the draft statements about advance directives in the draft Mental
Incapacity Bill for England and Wales (June 2003).
5. STANDARDS
We welcome the draft NICE Supportive & Palliative
Care Guidance for adults with cancer in England and Wales. We
are pleased that this guidance reflects areas that Macmillan has
long been pushing for, such as user involvement, information,
support to carers, financial advice and support, and general palliative
care. We are, however, concerned that there is currently no requirement
to implement the guidance, nor any clearly defined resources allocated.
Macmillan recommends that the draft standards currently under
development are consulted on as soon as possible, cover the whole
cancer journey, and have a strong community focus. (The Committee
may be interested to know that, in Macmillan, we have recently
completed some work on developing good practice guidance for cancer
services in primary care). We recommend that effective peer and
user review processes are put in place, meaningful user-defined
outcome measures are developed, and user satisfaction is regularly
monitored.
We are also concerned that the NICE guidance
only makes explicit the responsibilities of the health sector
and does not require equal commitment by Social Services. We urge
the Committee to recommend that the standards cover both the health
and social care sectors.
We would like to inform the Committee that Macmillan,
in cooperation with other cancer charities, will be launching
a patient-friendly version of the guidance at the end of March
to coincide with the NICE publication. We have produced a leaflet
to inform cancer patients and their carers of what they should
expect from good quality cancer services. We hope that this leaflet
will help to empower patients and drive up standards. See Appendix
Four for draft leaflet—the Committee is kindly asked to
observe the embargo date of the 24 March 2004.
We recognise the importance of tools to support
the implementation of guidance and standards. We would therefore
like to draw the Committee's attention to Macmillan's Gold Standards
Framework (GSF) Programme which advocates an approach based on
the 7-point framework: Communication, Co-ordination, Control of
Symptoms, Continuity, Continued Learning, Carer Support and Care
of the Dying. See Appendix Five for a copy of the GSF. We would
be happy to share with the Committee the results of evaluations
highlighting the benefits of this tool in improving palliative
care for people at home.
We welcome the prominence given to Macmillan's
GSF Programme in the NICE Supportive & Palliative Care Guidance
and the recent announcement by the Secretary of State for Health
for an additional £12 million to support end-of-life care.
We urge the Committee to support the roll-out of this framework
throughout the UK.
We also recommend that greater priority is given
to capturing examples of good practice and rolling these out to
ensure consistency. We believe that it is not only important to
capture and spread learning to improve cancer services, but also
because these lessons will apply to other disease areas.
Macmillan is also concerned that standards of
palliative care for cancer patients in nursing and residential
homes are generally unsatisfactory. We commissioned research in
the year 2000 which highlighted that the dependency of elderly
patients in nursing homes was increasing, the number of deaths
within nursing homes was rising, and nursing home staff needed
to be prepared appropriately to care for these patients. We recommend
that palliative care education for care staff in nursing and residential
homes is given urgent priority. Specifically we recommend that:
Palliative care in nursing homes is improved through
educational initiatives to raise the standards of care of residents
and their relatives and the working practices of individual nurses,
particularly healthcare assistants.
— Palliative care in nursing homes
is developed through the work of established specialist palliative
care posts, for example by specialist palliative care nurses becoming
more involved in working with nursing homes; and
— Palliative care for older people
can be developed through the establishment of new roles; a Palliative
Care Nurse Practitioner in Nursing Homes and a Facilitator in
Palliative Care for Older People.
We already know from research we commissioned
in 2001 that standards of care in the private sector are different
and often lower than those in the NHS. We recommend that more
efforts are made to influence the provision of high standards
of supportive and palliative care in the private sector, as well
as in the NHS and voluntary sectors. We recommend that there is
more sharing of expertise and good practice, and closer collaboration
between health and social care professionals in the NHS and private
sectors. We also recommend that more government influence is
exerted on private sector insurance companies to provide palliative
care for cancer patients as part of their insurance cover.
6. STRUCTURES
FOR DELIVERY
OF CARE
We recognise that future trends indicate a more
diverse market of care, with an increasing role for the private
sector and the emphasis being on "focused providers"
carrying out a large number of a limited range of procedures.
We are concerned that this move towards a more diverse market
of care may mean that supportive and palliative care needs are
overlooked. We urge that new technologies and more efficient ways
of treating cancer are explored, but not at the expense of care
of people by people.
We recommend that there is closer collaboration
between health and social care professionals, between professionals
and patients/carers, and between the public/private/voluntary
sectors. Patients have diverse needs which need to be met in an
integrated way by different providers. We recommend that more
efforts are put into working across boundaries and ensuring care
for patients is coordinated and underpinned by a whole-person
approach.
We recommend that appropriate models of care
are provided that recognise the need to be increasingly sensitive
to different genders, age, ethnicity, etc.
We consider it of great importance that a broad
view of the palliative care field is maintained which extends
beyond particular diseases and services. The National Council
for Hospice and Specialist Palliative Care Services has carried
out this role for over a decade with very slender resources. In
the light of the Council's review of its role and function, Macmillan
Cancer Relief has agreed with other bodies to provide a substantial
grant to allow it to plan adequately, to end its dependence on
project funding and to allow it to maintain its pivotal role.
7. SKILLS—PATIENTS
AND PROFESSIONALS
Macmillan welcomes the Department of Health's
commitment to increase the number of cancer specialists. However,
we continue to have concerns that demand will outstrip supply.
This therefore remains a key challenge, especially given that
roles are changing and the boundaries between professions are
becoming increasingly blurred. (Amended 16 March 2004)
Macmillan has recently commissioned research
into cancer care workforce issues. This highlights the changing
expectations from patients and their wish for more of a partnership
approach with the professionals caring for them. There is an increasing
move towards patients wanting health care professionals to advise
them of appropriate treatment options, the pros and cons of each
of these, and helping them to interpret the information and make
the right choices. We recommend that more effort is put into helping
professionals manage change and redesign services around the needs
of the patients. This means having in place appropriate education
and training programmes to support this. Professionals also need
help and support to work in partnership with others in different
sectors. Team working and change management should become major
NHS training priorities for the future.
We also recommend that more help is given to
patients and carers on self-care/self-management so that they
are better able to help themselves. Patients need to be informed
of what services exist and how they can access these. They should
routinely be advised of self-help and support groups and how they
can get involved in influencing cancer services at a strategic
level. Macmillan provides training and support to over 600 cancer
self-help and support groups across the UK and, through its CancerVOICES
Programme, offers support to help people get involved in influencing
and improving cancer services. We would like more research on
the applicability of the Expert Patients Programme (developed
for people living with long-term chronic conditions) to people
affected by cancer. Macmillan itself is undertaking some pilot
work on this topic. Far more opportunities should exist for people
affected by cancer to be supported to utilise their own skills
and resources, including peer to peer support.
8. RESEARCH
Macmillan has been concerned for some time that
research into cancer care issues has not been prioritised in the
same way as biomedical cancer research. Indeed, we flagged up
our concerns in our submission to the House of Commons Science
and Technology Committee on cancer research in 2000. Similar points
were raised by Cancerlink in their submission to the same Committee.
Our concerns were reinforced by the subsequent publication by
the National Cancer Research Institute (NCRI) of a report that
showed that only 6% of the total spend on cancer research in the
UK is on cancer control, survival and outcomes research, of which
supportive and palliative care is only a part.
Macmillan Cancer Relief is concerned that, as
demand for palliative care grows, the research evidence for current
practice and future policy remains weak and the research resources
and infrastructure are inadequate to support the generation of
better evidence. In recognition of this, we have provided a core
grant to the Cicely Saunders Foundation to enable it to develop
its research program more fully. Collaboratively with the National
Cancer Research Institute, we are also considering a major injection
of funding to academic centers with a good track record and potential,
to support a significant number of clinical and non-clinical postgraduate
and postdoctoral fellowships to strengthen this capacity.
Macmillan strongly welcomes the draft recommendations
made in Section 13 of the NICE Supportive & Palliative Care
Guidance Manual (October 2003) about strengthening the evidence
base for supportive and palliative care. We welcome the recommendations
that:
— Future research should focus on determining
effective solutions rather than re-determining need.
— Research funders should invest in
longitudinal studies of patient and carer experiences and expectations
of both illness and health and social care.
— New services and many existing services
should be developed (or continue to be developed) within a rigorous
and properly funded evaluation framework.
— Research funders should invest in
research programmes in both supportive and palliative care which
are robust and involve and measure aspects of services important
to users.
— Future research should investigate
effective care for those from diverse cultures.
— Work should be undertaken to develop
a core set of person-centred outcome measures robust enough to
capture changes over time.
Macmillan has also been concerned about the
absence of robust research capturing patients' and carers' views
on end-of-life issues. Much of the current debate about end-of-life
issues, in particular assisted suicide, is dominated by the views
of the medical and legal professions and the media, with very
little known about patients' and carers' own views as they approach
the end of their life. We are concerned that where research has
been done, it suffers from methodological weaknesses.
Macmillan recommends that more methodologically
robust research is undertaken to understand the needs and views
of patients and their carers and how these change as patients
approach the end of their life. This data should be used to inform
a more enlightened public debate.
The Committee may be interested to know that,
as a result of the gaps in supportive and palliative care research
and Macmillan's own experience in practice development, Macmillan
has recently agreed its own cancer care research priorities based
on feedback from users. Over the coming years, we will be influencing
others to undertake research involving users and commissioning
our own research in the following areas:
— Helping people affected by cancer
make choices.
— Identifying best practice in service
delivery.
— Implications of long-term survival.
— Supporting self management.
— Involving people affected by cancer
in research.
We look forward to this Health Select Committee
inquiry influencing the priority and funding given to research
in these important areas.
9. FUNDING
We are concerned that, apart from money for
end-of-life care, there are no additional resources to support
the implementation of the NICE Guidance on supportive and palliative
care. We are also concerned that the implications for Social Services
Departments have not been identified in the Economic Review supporting
the guidance.
We recommend that additional resources are identified
to support the implementation of the guidance, and that this money
is allocated in a way that requires partnership working between
health and social care. In particular, we would like to see sustained
funding for User Partnership Groups to ensure user involvement
becomes embedded into Cancer Networks, a whole-person approach
to information and support, meeting carers' needs, money to increase
the number of benefits advisers, and funding for user-led cancer
care research.
We recommend that the lessons learn within cancer
and palliative care are built upon when the allocation processes
for the £12 million announced in December are agreed.
February 2004
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