APPENDIX 2
Memorandum by Macmillan Cancer Relief
(GP03)
1. EXECUTIVE
SUMMARY
Macmillan's five key recommendations from our
2001 out-of-hours report are still relevant and should remain
the guiding principles for out-of-hours palliative care services.
— Commissioners and providers should
develop policies and standards based on local needs.
— Primary Care Organisations (PCO)
and out-of-hours providers should develop co-ordinated policies
to ensure and improve information transfer within and between
organisations (eg handover forms).
— Patient and carer support should
be available 24-hours a day via a single telephone call and services
should be fully integrated with nursing and rapid response teams
for crises.
— Primary care teams and out-of-hours
providers should be resourced to ensure adequate training in general
palliative care, with access to guidelines and telephone support
of a named provider of specialist palliative care.
— The issues of availability, storage
and transport of drugs (including controlled drugs) out of hours
must be addressed.
Out-of-hours provision is currently patchy throughout
Britain. The existing out-of-hours services, which are largely
provided by local GP co-operatives, are generally satisfactory
with a few pockets of good practice and excellence. However there
are also many shortcomings and inconsistencies.
There is a danger that the establishment of
new out-of-hours services will lead to a reduction in the quality
of palliative care services. It is likely that there will be fewer
home visits by general practitioners. Paramedics or nurse practitioners
working to protocols may end up dealing with palliative care patients
but without understanding the special needs of this group. This
in turn could lead to inappropriate use of ambulance services,
transfers to A&E departments, hospital admissions and inappropriate
resuscitation attempts.
The current problems with access to drugs for
palliative care—particularly controlled drugs—must
be resolved in all areas. Anticipatory prescribing will help but
there will always be unforeseen changes where a new medication
is required and systems must be consistently in place to respond
to this.
The new out-of-hours services must recognise
that palliative care patients have specific and complex needs
of and they should have the right structures and procedures are
place to build on current best practice.
The introduction of new out-of-hours services
offers an opportunity to establish the structures and procedures
set out in the Gold Standards Framework, such as flagging of palliative
care patients, handover of care/management plans, and the use
of tools such as the Liverpool Care Pathway. We would like to
see these procedures replicated on a consistent basis throughout
the country to ensure equity of palliative care services for all
who require them.
Macmillan recommends that experienced and trained
GPs and senior specialist cancer care nurses are best equipped
to provide out-of-hours services to palliative care patients and
that they must be supported by access to 24-hours district nursing
and personal care support.
Macmillan recommends that monitoring mechanisms
should be put in place to assess the impact of the new out-of-hours
arrangements on the quality of palliative care.
2. INTRODUCTION
2.1 Macmillan Cancer Relief is the leading
cancer care charity in the UK providing support for people living
with cancer, and shaping the future of cancer services in the
UK. Our work is funded almost entirely from the generosity of
our supporters. We provide a range of services, including Macmillan
nurses, doctors and other health/social care professionals, cancer
care centres, a range of cancer information, practical help at
home, patient grants and benefit advice.
2.2 In 1992 Macmillan initiated a project
to develop the role of Macmillan primary care doctors across the
UK. Macmillan GPs are General Practitioners with a special interest
in palliative care who are funded by Macmillan Cancer Relief to
spend some time on local palliative care development through roles
in education, facilitation of the Gold Standards Framework (see
Annex 1), taking a lead cancer GP role, working in community palliative
care research or acting as a clinical facilitator taking the GP
with a special interest role. There are now 65 Macmillan GP Facilitators
throughout the United Kingdom.
2.3 This response is based on the opinions
of 22 Macmillan GPs working in England and Wales. The views of
each GP are based on experiences of out-of-hours services provided
to 150,000-350,000 patients in their localities. The majority
of current services are GP co-operatives but in four respondent's
areas some or all out-of-hours care is provided by commercial
organisations. We also canvassed the views of users of cancer
services and their carers and these are included in the submission.
2.4 Our submission relates particularly
to people receiving palliative and end-of-life care in their own
homes, in nursing or residential care, and in community hospitals.
We use the World Health Organisation definition of palliative
care (see Annex 2).
3. POTENTIAL
IMPLICATIONS FOR
QUALITY OF
OUT-OF-HOURS
SERVICES, INCLUDING
RAPIDITY OF
RESPONSE, PROVISION
OF BACKUP
AND QUALITY
OF PATIENT
CARE
3.1 Macmillan believes that people receiving
palliative and end-of-life care merit special consideration as
their needs vary from other users of out-of-hours services. In
most other situations, patient safety, minimisation of risk, and
life saving measures are paramount and the current emergency responses
reflect this. However, different priorities may apply to patients
for whom decline and death is inevitable. Palliative care emphasises
dignity, comfort and control of physical and psychological symptoms
and distress. Letting patients, family and carers retain choice
and control of issues such as place of care and death becomes
very important (see Annex 3)
3.2 In Macmillan's 2001 report Out-of-hours
palliative care in the community[1]
we made the following recommendations:
— Commissioners and providers should
develop policies and standards based on local needs.
— Members of Primary Care Organisations
(PCO) and out-of-hours providers should develop co-ordinated policies
to ensure and improve information transfer within and between
organisations (eg handover forms).
— Patient and carer support should
be available 24-hours a day via a single telephone call and services
should be fully integrated with nursing and rapid response teams
for crises.
— Primary care teams and out-of-hours
providers should be resourced to ensure adequate training in general
palliative care, with access to guidelines and telephone support
of a named provider of specialist palliative care.
— The issues of availability, storage
and transport of drugs (including controlled drugs) out of hours
must be addressed.
3.3 Macmillan believes that these five key
recommendations are still extremely relevant and recommends that
should remain the guiding principles for all out-of-hours services
for cancer patients.
3.4 Macmillan endorses the key recommendations—particularly
recommendations 12, 13 and 14 on generalist palliative care services—made
in the recently published NICE guidance Improving supportive
and palliative care for adults with cancer[2],
although we believe our comments are also relevant to those receiving
palliative and terminal care for other conditions as well as for
cancer. The 2000 Carson Report Raising Standards for Patients:
New Partnerships in Out-of-Hours Care[3]
also makes specific recommendations, such as the need for out-of-hours
services to recognise the special needs of those receiving palliative
care and the terminally ill, which are still very relevant (see
Annex 5).
3.5 We also endorse the points made in the
King's Fund report, Psychological support for dying people:
what can primary care trusts do?[4],
about the need to ensure excellent patient support, access to
drugs and information, the development of intermediate services
such as rapid response teams and strengthened district and community
nursing for patients at home at all times.
3.6 We asked Macmillan GPs to comment on
the strengths and difficulties of the current out-of-hours provision
in their area and to consider the impact of the changes planned
with the implementation of the new GP contact and altered out-of-hours
care arrangements. Most GPs who responded rated the out-of-hours
service in their area as "satisfactory" or "good"
and, in two cases, "excellent". Only three GPs rated
their local service as "poor".
4. GOOD PRACTICE
AND STRENGTHS
4.1 Most current out-of-hours services are
provided by GP co-operatives. We asked Macmillan GPs to provide
examples of good practice in the current out-of-hours system.
The following are the most frequently cited examples of good practice
though these features are not found in all out-of-hours services:
— Good personal communication between
local medical and community nursing colleagues. For example, one
GP mentioned the "ability to fax special information to co-op
so all consulting GPs have that info".
— Mechanisms for "handover forms"
and for out-of-hours organisations to tag patient notes with an
"alert" and agreed care plan to be passed on the responding
professional.
— Clear arrangements for supply of
drugs out-of-hours often with dedicated palliative care drug boxes
or bags and/or arrangements with local pharmacies.
— Good communication with generalist/specialist
community nursing colleagues.
— Good generalist and specialist nursing
teams including "hospice at home" provision.
4.2 Some GPs also mentioned the increasing
but patchy use of the Macmillan Gold Standards Framework for palliative
care (GSF) which includes some of the above features. Other examples
of good practice that were mention albeit less frequently included:
— Increasing use of the Liverpool integrated
care pathway[5].
— The availability of specialist advice
from local palliative care consultants. One Macmillan GP reported
that a "Local specialist service provides out of hours advice
for a doctor that can be accessed by patient, carer, or OOH doctor".
— Out-of-hours palliative care (clinical
and administrative) information held at out-of-hours base or in
the visiting car.
— Highly motivated doctors and hard
working district nurses.
— A palliative care co-ordinator working
for a commercial out-of-hours provider (Prime Care).
— Specific educational meetings about
palliative care for clinical out-of hours staff.
4.3 Users' views. We asked people affected
by cancer to give examples of good practice from their experience.
Ease of access to the service was the key concern for users as
the following quotes illustrate:
"One call puts you in touch with a heath
professional that can give advice, arrange for a GP to visit or
arrange for an ambulance to transport the patient to hospital
if deemed necessary"
"Emergency prescriptions can be readily
obtained by visiting the clinic".
"A call to the Hospice at Home nurse is
the only call necessary in an emergency. She will assess the situation
and arrange for the appropriate action, whether she makes a visit,
arranges for the District Nurse or a GP to visit. If a GP is appropriate,
she will speak to him and give him the up to date information
from the Hospital records".
5. PROBLEMS WITH
THE CURRENT
SYSTEM
5.1 We asked GPs about the sorts of problems
they had encountered with out of hours provision in their localities.
The following problems were most commonly mentioned by Macmillan
GPs in their responses:
— Difficulty in accessing drugs out
of hours (especially controlled drugs such as morphine). "Access
to opiates is chaotic", complained one respondent.
— Difficulty in accessing generalist/specialist
nursing help—particularly at night.
— Inconsistent use of handover form/care
plans resulting in poor continuity of care. "Visiting GPs
often do not have access to adequate information about dying patients,
particularly in regard to preferred place of care" reported
one respondent.
— Difficulty in accessing home care
support workers.
— Clinical/administrative information
not easily available to duty doctors with no locally agreed protocols.
— Lack of skill, interest, etc of some
duty doctors and a perceived reluctance of some to visit these
patients at home.
— Lack of time, competing demands and
pressure to decrease number of home visits made.
— System could push patients/carers
to calling an ambulance resulting in inappropriate admission.
One Macmillan GP reported the "inappropriate use of 999 calls
leading to inappropriate resuscitation attempts on palliative
patients".
— Delays in getting through to doctor.
5.2 Users' views. Many of the GPs' concerns
were echoed by people affected by cancer. The problems of continuity
of care and access to patient records was an issue for users as
well as GPs. "There is no continuity—doctors do not
have access to patients' notes", complained one user. "The
on-call doctors do not have access to patients' records, when
they visit such a patient they largely have to rely on what the
patient or carer tells them in order to decide on a course of
treatment, limiting what they can prescribe. In my area they can
talk to the Hospice at Home service that holds patients' files,
but this does not cover the majority of patients and is one of
only 3 or 4 nationally", reported another user. Difficulty
in contacting the service was also an issue for users: "The
number for the out-of-hours service is not readily available.
In some cases, a call to your own GP is redirected automatically
to the out-of-hours service, while in others an answer machine
gives the number of the out-of-hours service".
5.3 The current problems with access to
drugs for palliative care—particularly controlled drugs—must
be resolved in all areas. Anticipatory prescribing will help but
there will always be unforeseen changes where a new medication
is required and systems must be consistently in place to respond
to this.
6. FUTURE OPPORTUNITIES
6.1 Most Macmillan GPs who responded to
our questionnaire told us they were clear about the future arrangements
for out-of-hours services in their areas. We asked GPs what they
thought were the opportunities for better out-of-hours care in
the future. The most frequently mentioned opportunities were:
— More consistent use of handover forms/care
plans and the Gold Standards Framework. Out-of-hours providers
could encourage these and have excellent systems to pass these
on.
— Good arrangements for out of hours
provision of drugs (including controlled drugs such as morphine)
and equipment (eg syringe drivers).
— More consistent use of the Liverpool
integrated care pathway for patients at home, in residential and
nursing care and in community hospitals.
— Out-of-hours providers could agree
a nationally recognised flagging system for palliative/terminally
ill patients to alert responders to particular needs of this group.
Ideally this flag would be recognised by all providers of out-of-hours
care including emergency services, A&E departments, NHS Direct
etc (see extract from the Carson Report at Appendix 5). One GP
suggested "linking OOH providers so all would be alerted
if patient is known to be terminally ill—thus more likely
that their wishes will be carried out".
— Consistent provision of 24-hour district
nursing supported by home care assistants and specialist Macmillan/palliative
care nurses was repeatedly highlighted. "More Macmillan nurses
to be in charge of the care of the dying" said one GP. Rapid
response and crisis intervention teams were mentioned by some.
— Opportunity to include training in
palliative/end-of-life care for all out-of-hours providers.
— Provision of information—clinical
and administrative—and the promotion of palliative care
protocols.
— Better integration of nursing, home
care and medical provision out-of-hours with effective communication
and good access to resources.
6.2 One GP suggested that "Patient
held records would stop the need for long handover paper chains".
Another GP wanted to see a single point of access for patients
and carers.
7. FUTURE RISKS/THREATS
7.1 We asked Macmillan GPs to tell us what
the future risks/threats to their local out-of-hours services
might be. The following potential problems were identified most
frequently by GPs:
— Fewer doctors covering larger areas
with pressure to decrease home visiting. "Over time fewer
doctors working OOH, with an inevitable dilution in the number
of experienced doctors looking after palliative care patients
out-of-hours", warned one GP.
— Risk of more palliative care patients
being inappropriately taken to A&E, admitted to hospital,
and inappropriately resuscitated. "Each area needs a provision
for overnight nursing input to palliative patients to prevent
inappropriate admissions and facilitate discharges from hospital",
suggested one GP.
— Special needs and different priorities
of palliative/terminally ill patients may not be recognised by
the system.
— Front line care more likely to be
delivered by paramedics/nurses working to protocols and NHS Direct.
One GP warned that "Communication issues may be more complicated—protocol
driven care can be without the personal touch".
— Usual doctor/nurses will not be available
for care/advice for longer periods—problems of continuity
of care and risk of patients deferring seeking help.
— Communication and handover problems
with less personal knowledge and contact between professionals.
One GP warned of the danger of "too many different professionals
being involved in OOH care".
— Less visits by GPs, who are often
good at managing messy and uncertain situations.
— Risks of fragmented service.
7.2 Respondents also said that problems
that exist within the current arrangements, such as access to
drugs and equipment and lack of nursing provision out-of hours
continuing, could also persist in the future.
7.3 There is a danger that the establishment
of new out-of-hours services will lead to a reduction in the quality
of palliative care services. It is likely that there will be fewer
home visits by general practitioners. Paramedics or nurse practitioners
working to protocols may end up dealing with palliative care patients
but without understanding the special needs of this group. This
in turn could lead to inappropriate use of ambulance services,
transfers to A&E departments, hospital admissions and inappropriate
resuscitation attempts.
8. WHAT SHOULD
SERVICES LOOK
LIKE IN
FUTURE?
8.1 We asked Macmillan GPs to tell us what
they would like to see from out of hours services in the future.
The GPs who responded made the following recommendations:
Strategic
— Highlighting the special needs of
palliative and terminally ill people in out-of-hours arrangements.
(See also the Carson Report recommendations at Annex 5).
— A commitment to supporting people
to die in their place of choice whenever possible.
— Commitment and funding of infrastructure
to support excellent community care—particularly 24-hour
district nursing and home care support.
— PCO and Strategic Health Authorities
commitment to standards of out-of-hours care for these patients
and regular audit to ensure these are met.
Operational
— Setting of minimum standards of knowledge
and skills relating to palliative care in all out-of-hours providers,
administrative and clinical.
— Support for the Gold Standards Framework
and its elements such as routine use of handover forms, anticipatory
planning and prescribing, integrated care pathways, etc.
— Consistent availability of equipment
and drugs including controlled drugs out-of-hours.
— Availability of clinical information
and guidelines and access to specialist advice to all out-of-hours
providers.
— Recognition of the training needs
of all levels of out of hours providers and support to those providing
such training.
— Expectation of regular performance
review and audit to ensure standards of care are met and improved.
— Primary care as co-ordinator and
leader of care.
8.2 Users' views. Users were also asked
for their recommendations for future out-of-ours provision. An
easy to access and responsive service was an important requirement
for people affected by cancer. One user proposed "One telephone
number to access the service which is published locally"
and a "nurse managed triage system to access all calls".
Another user wanted "prompt attention according to the degree
of emergency as perceived/triaged by the responder".
8.3 The issue of patient record was also
raised by users. "Doctors need to have access to current
medical notes—perhaps these should be held by the patient
where out of hours care might be anticipated", suggested
one user. This view was echoed by another: "For patients
with chronic disease or cancer, this should be a system similar
to the Hospice at Home service, where the out-of-hours receives
up to date records from the hospital. These patients should also
hold their own records at home so that the GP can consult them
when making a home visit and also add details of any treatment
given during the visit. The ideal situation will be when the patient's
records can be readily accessed electronically".
8.4 Staff with the right skills or else
access to specialist advice was another issue for users. "The
out-of-hours staff need to be happy to do the work, have good
communication skills and interpersonal skills, be able to give
intramuscular injections safely and not treat you as though you
shouldn't be asking for help", said another user.
8.5 It is clear that, while pockets of good
practice and excellence exist, there is much room for improvement
in out-of-hours provision for palliative care patients. There
are still too many inconsistencies and shortcomings in the current
patchwork of services[6]
8.6 The current problems with access to
drugs for palliative care—particularly controlled drugs—must
be resolved in all areas. Anticipatory prescribing will help but
there will always be unforeseen changes where a new medication
is required and systems must be consistently in place to respond
to this.
8.7 The introduction of new out of hours
services offers an opportunity to establish the structures and
procedures set out in the Gold Standards Framework, such as flagging
of palliative care patients, handover of care/management plans,
and the use of tools such as the Liverpool integrated care pathway.
We would like to see these procedures, together with the good
practice that currently exists in certain areas, replicated on
a consistent basis throughout the country to ensure equity of
palliative care services for all who require them.
9. THE ROLE
OF GP CO
-OPERATIVES
9.1 GP co-operatives have shown many examples
of excellent practice in out-of-hours palliative care. The recognition
that palliative care patients have complex needs that differ from
other users of out-of-hours services is a prerequisite for good
practice. Good out-of-hours services rely on the skills of experienced
general practitioners in balancing the physical, social and psychological
needs of patients and managing uncertain situations. However,
this can take time and we are concerned about increasing time
constraints and pressures to decrease home visits by GPs in the
new arrangements. Macmillan recommends that the new out-of-hours
services must recognise that palliative care patients have specific
and complex needs of and they should have the right structures
and procedures are place to build on current best practice.
10. THE ROLE
OF NHS DIRECT
10.1 The needs of the palliative or terminally
ill patient may be substantially different from the majority and
that responses, such as dispatching an emergency ambulance, may
often be inappropriate. The Carson Report recognised that "There
are a small number of patients (those receiving palliative care,
for example) whose particular needs can be established in advance
and, with appropriate identification on the NHS Direct database,
their calls will not be triaged but will be passed directly to
those services that can meet their needs"[7]
It is essential that systems exist to alert NHS Direct staff to
the fact that they are dealing with a patient receiving palliative
care.
11. THE POTENTIAL
IMPACT ON
OTHER NHS SERVICES,
INCLUDING COMMUNITY
HOSPITALS, MINOR
INJURY UNITS,
GP CLINICS, AND
A&E SERVICES
11.1 Many patients express a wish to remain
at home in a final illness. It is therefore important that there
is appropriate support with medical, nursing and personal care
provision and access to drugs and equipment, to allow patients
to remain at home and avoiding costly and often inappropriate
acute hospital admission. Support for community hospitals and
intermediate care in nursing and residential homes may also allow
people to be cared for closer to home and family at considerable
financial saving.
12. POTENTIAL
FINANCIAL IMPLICATIONS
12.1 Avoidance of inappropriate interventions
can generate considerable savings. However, to realise these,
there is a need for investment in systems for information exchange
and communication systems, staff training, drug and equipment
provision and particularly 24-hour nursing and personal care support.
13. SKILL-MIX
WITHIN OUT-OF-HOURS
SERVICES
13.1 Macmillan GPs expressed concern that
the planned dilution of GP input to the out-of-hours service and
in particular constraints to reduce GP home visiting would affect
the quality of palliative care adversely. It was acknowledged
that the support needed from some patients to be able to remain
in their own home would be at the health care/personal care assistant
level, supported by visiting district or specialist nurses.
13.2 It is important that patients receiving
palliative care can be assessed out-of-hours by professionals
aware of the special needs of these patients. These professionals
must have the appropriate knowledge, skills and an interest in
palliative care and must be able to make critical judgements balancing
clinical, psychological, spiritual and social considerations.
Macmillan recommends that experienced and trained GPs and senior
specialist cancer care nurses are best equipped to fulfil this
role and that they must be supported by access to 24-hours district
nursing and personal care support.
14. ARRANGEMENTS
FOR MONITORING
OUT-OF-HOURS
SERVICES
14.1 Macmillan GPs told us that it was important
to have measures in place to see if the changed arrangements were
affecting the quality of palliative care provided. Measures could
include number of patients dying in their preferred place of death
and the number of palliative care patients transported by ambulance,
taken to accident and emergency, admitted to acute hospital or
resuscitated inappropriately. Established tools to assess carers'
satisfaction, such as the VOICES questionnaire[8]
could also be used. Macmillan recommends that, whatever monitoring
tools are used, the impact of new out-of-hours arrangements on
the quality of palliative care should be monitored.
This response was prepared by Dr Charles Campion-Smith,
General Practitioner and Macmillan GP palliative care facilitator,
and Duleep Allirajah, senior policy analyst at Macmillan.
Annex 1
GOLD STANDARDS
FRAMEWORK
The Gold Standards Framework is a practice-based
system to improve the organisation and quality of palliative care
services for patients who are at home in their last year of life.
Dr Keri Thomas, a Macmillan GP Adviser, identified recurring problems
in community-based palliative care provision and convened a multi-disciplinary
reference group to look more closely at these issues.
Focusing on improving clinical and organisational
knowledge and the human dimension of service delivery, the team
developed a practical framework based on seven "gold"
standards to encourage and enable practices to improve care for
patients. The seven standards cover:
— Continuity out-of-hours.
— Care in the dying phase.
Piloted and evaluated in over 100 practices
across the UK, the framework has shown that a systemic approach
to palliative care provision can dramatically improve patients'
experience of care, and positively impact on hospital admissions
and waiting times, as well as staff morale.
Patients receive a better quality service, with
greater control over their care, better information and an increased
likelihood they will die in their place of choice. For the healthcare
team the benefits of improved communication and planning show
in enhanced team spirit and a sense of achievement.
The Gold Standards Framework is fully endorsed
by the NHS and is supported by the Cancer Services Collaborative
Improvement Partnership.
Macmillan Cancer Relief has now funded a programme
to deliver the framework to a further 1,000 GP practices by the
end of 2005.
Annex 2
PALLIATIVE CARE
DEFINITION
"Palliative care is active care offered
to a patient with a progressive illness, and their family when
it is recognised that the illness is no longer curable, in order
to concentrate on the quality of life and the alleviation of symptoms
within the framework of a coordinated service. Palliative care
neither hastens nor postpones death; it provides relief from pain
and other distressing symptoms, integrates the psychological and
spiritual aspects of care. In addition it offers a support system
to help relations and friends cope during the patient's illness
and in bereavement."
World Health Organisation 1989
Annex 3
KEY COMPONENTS
OF BEST
PRACTICE IN
COMMUNITY PALLIATIVE
CARE—NICE SUPPORTIVE
AND PALLIATIVE
CARE GUIDANCE
2004
— Patients with palliative care needs
are identified according to agreed criteria and a management
plan discussed with a multidisciplinary team.
— These patients and their carers are
regularly assessed using agreed assessment tools.
— Anticipated needs noted, planned
for and addressed.
— Patient and carer needs are communicated
within the team and to specialist colleagues, as appropriate.
— Preferred place of care and place
of death is discussed and noted, and measures taken to achieve
this, where possible.
— Co-ordination of care is orchestrated
by a named person in a practice team.
— Relevant information is passed to
those providing care out of hours, and anticipated drugs left
in the home.
— Carers are educated, enabled and
supported, including the provision of specific information, financial
advice and bereavement care.
— Audit, reflective practice, development
of practice protocols and targeted learning is encouraged as part
of personal, practice and PCT development plans.
— A protocol for care in the dying
phase is followed eg Liverpool Care Pathway or alternative.
Annex 4
The principles of a good death—proposed
by the Debate of the Age, Health and Care study group
— to know when death is coming, and
to understand what can be expected;
— to be able to retain control of what
happens;
— to be afforded dignity and privacy;
— to have control over pain relief
and other symptom control;
— to have choice and control over where
death occurs (at home or elsewhere);
— to have access to information and
expertise of whatever kind is necessary;
— to have access to any spiritual or
emotional support required;
— to have access to hospice care in
any location, not only in hospital;
— to have control over who present
and who shares the end;
— to be able to issue advance directives
which ensure wishes are respected;
— to have time to say goodbye, and
control over other aspects of timing; and
— to be able to leave when it is time
to go, and not have life prolonged pointlessly.
Annex 5
Extracts from Raising Standards for Patients:
New Partnerships in Out-of-Hours Care ("The Carson Report")
Department of Health 2000[9]
"There are a small number of patients (those
receiving palliative care, for example) whose particular needs
can be established in advance and, with appropriate identification
on the NHS Direct database, their calls will not be triaged but
will be passed directly to those services that can meet their
needs".
(p 13)
"The Review Team is acutely aware, however,
that for certain particular groups of patients, it would not be
appropriate to wait until the new electronic exchange of data
is in place. Thus, NHS Direct, out-of-hours providers and GP practices
should develop methods to ensure appropriate three-way exchange
of information for patients:
— With complex acute clinical needs.
— With mental health problems.
— With any other special needs."
(p 20)
"............it will be just as important
to develop an appropriate formulary for out-of-hours medicines,
ensuring that the new providers carry a sufficiently wide range
of drugs to meet the vast majority of out-of-hours needs (including
the particular needs of terminally ill patients)."
(p 43)
June 2004
1 Thomas K, 2001. Out-of-hours palliative care in the
community. London, Macmillan Cancer Relief. Back
2
National Institute for Clinical Excellence (NICE), 2004. Improving
supportive and palliative care for adults with cancer. London.
Department of Health. Back
3
Carson D. 2000. Raising standards for patients: new partnerships
in out-of-hours care, an independent review of GP out-of-hours
services in England, London: Department of Health. Back
4
Shipman C, Levenson R, Gillam S. 2002 Psychological support for
dying people: what can primary care trusts do?, London, King's
Fund. Back
5
The Liverpool Care Pathway for the dying patient (LCP) is an evidence-based
framework for end of life care developed by Marie Curie Cancer
Care. The LCP provides guidance on the different aspects of care
required, including comfort measures, anticipatory prescribing
of medicines and discontinuation of inappropriate interventions. Back
6
Barclay S, Rogers M, Todd C. Communication between GPs and cooperatives
is poor for terminally ill patients, BMJ 1997; 315: 1235-1236. Back
7
Carson D. 2000. Raising standards for patients: new partnerships
in out-of-hours care, an independent review of GP out-of-hours
services in England, London: Department of Health. Back
8
The VOICES (Views of Informal Carers-Evaluation of Services) questionnaire
was developed to obtain evidence from carers/relatives about end-of-life
care. Back
9
Carson D 2000. Raising standards for patients: new partnerships
in out-of-hours care, an independent review of GP out-of-hours
services in England, London: Department of Health. Back
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