Memorandum by Community and District Nursing
Association (PC 60)
1. SUMMARY
1.1 The provision of palliative care in
the community must be provided by a multidisciplinary team within
Primary Care.
1.2 District Nurses have a 24-hour continuing
responsibility for patient care, therefore District Nurses and
the District Nursing service play a vital role in the multidisciplinary
team approach to palliative care in the community setting.
1.3 Palliative care in the community is
variable, some geographical areas having excellent comprehensive
services whilst other areas appear lacking in certain aspects
of care but no area can be complacent. The development of integrated
care and clinical pathways for all aspects of cancer care should
be in place to ensure the quality and consistency of care.
1.4 The Community and District Nursing Association
believe that 24-hour out of hours services would enhance palliative
care and ensure adequate treatment for more people in their own
homes.
1.5 All dying patients and their families
are entitled to receive assessment of their care needs and supervision
of their care from trained community nurses.
2. INTRODUCTION
2.1 For 33 years the Community and District
Nursing Association (CDNA) has been caring for those who care.
We are a specialist trade union affiliated to both the TUC and
STUC and represent 5,000 nurses who work in the community, making
highly skilled decisions on a daily basis in primary care. Our
members are experienced clinicians from various senior nursing
backgrounds who strive to give clients the best possible care.
2.2 The modernisation of the NHS has instigated
the modernisation of community nursing and this has been reflected
throughout our membership. We have a positive, forward thinking
mixture of professionals who are always open to learning and cascading
their knowledge and skills.
2.3 The breadth of our membership includes
District Nurses and their teams, Practice Nurses, those working
in Nursing Homes, School Nurses, Health Visitors; indeed, any
nurses who do not work in the hospital environment.
2.4 Our members, particularly those in District
Nursing, deal on a daily basis with Palliative Care.
3. DOMICILIARY
PALLIATIVE CARE
PROVISION FROM
THE DISTRICT
NURSES PERSPECTIVE
3.1 The provision of palliative care in
the community must be provided by a multidisciplinary team within
Primary Care.
3.2 District Nurses have a 24-hour continuing
responsibility for the patients' care, therefore District Nurses
and the District Nursing service play a vital role in the multidisciplinary
team approach to palliative care in the community setting.
3.3 When working toward the Gold Standards
Framework in Palliative Care, the quality standard, District nurses
have a pivotal role. They deliver the majority of care and support
for patients and carers on a daily basis.
3.4 They provide a link for patients to
both general practice, specialist patient care services, Hospice
and Macmillan Services. They also maintain communication channels
with services in secondary care.
3.5 Palliative care in the community is
variable, some geographical areas having excellent comprehensive
services whilst other areas appear lacking in certain aspects
of care, but no area can be complacent.
3.6 The development of integrated care and
clinical pathways for all aspects of cancer care is complex, but
should be in place to ensure the quality and consistency of care.
4. PATIENT CHOICE
4.1 The majority of patients choose to remain
in their homes and end their lives in familiar surroundings; the
commonest worries tend to be:
(a)
Will my spouse/carer have support—they do not
want them burdened/extra work.
(b)
If I need someone, will someone come no matter what
time—worries about fear and the need for reassurance.
(c)
Will I get the same treatment at home as in hospital—needing
assurance that they will not be in pain and will have the same
quality care.
(d)
Do not want strangers looking after them—Will
I have the same people and will they get to know me?
(e)
Will the people caring for me be experienced/qualified
to do so?
4.2 Family of those dying also wish their
loved one to remain at home; their commonest worries are:
(a)
Will they get the same quality care at home? Are
the staff as experienced?
(b)
Will there be someone they can call upon at all times?
(c)
Will there be the same equipment available in the
home?
(d)
They do not want anything to do with the drugs etc
but want to know that they are able to help the person if they
are in pain.
(e)
Will they be involved in physical care? They either
have no wish for any involvement or they want a role to play.
(f)
Want to be kept fully informed in all areas.
5. OUT OF
HOURS SERVICE
5.1 A constant standard is essential in
this area, however this is where the biggest differences occur.
An increase in resources is essential.
5.2 Some areas have no 24-hour nursing services
of either nurses on duty or on call.
5.3 Where there is no nursing care available
due to either no service provision or an inability to cope with
demand night cover then has to be provided by:
5.4 Marie Curie Service—This
charitable service in part funded by Primary Care Trusts which
employs both qualified and unqualified staff who give care and
support to both the dying patient and their relatives.
5.4.1 This service given is recognised for
its quality of care for dying patients and their families that
community nurses respect. The availability of this service is
unfortunately variable throughout the country, and obtaining the
service at short notice can be very difficult, although some work
has undertaken to improving availability and solving this problem.
5.5 Private Agencies—This care
is financed by some PCTs and is very questionable. The District
Nurse has no guarantee regarding the standard and quality of care
the patient will receive. There is NO guarantee of the standard
of training, if any, of those sent to undertake care. There is
also no guarantee that the staff will have any experience, or
even be reliable and arrive on duty. This at a time when patients
and families need reliable, trained, experienced care staff in
order not only to reassure and keep the situation calm but to
recognise when complications are forming and to give symptom control.
5.6 The experience of death and dying should
be a positive, acceptable experience for all concerned.
6. THE PROVISION
OF DRUGS
AND EQUIPMENT
6.1 Providing equipment and drugs can be
a great source of concern and stress to community nurses.
6.2 The availability of the drugs required
to maintain patient comfort can be difficult to obtain and in
some areas impossible.
6.3 Although the provision of equipment
is easier to obtain, the community nurse has to think well ahead
to ensure provision. Equipment, such as syringe drivers, is difficult
to obtain out of hours in some areas.
7. SPECIALIST
INVOLVEMENT
7.1 The MacMillan Service, which is part
funded by Primary Care Trusts, is a valuable service. Their involvement
in patient care differs around the country but on the whole the
District Nursing service and the MacMillan Service work well together.
The vast majority of District Nurses have additional skills in
palliative care but still value the input of the MacMillan specialist
service in order to ensure that patient care is of the highest
quality.
7.2 Hospice involvement with the community
nursing service varies from area to area. Patient care where there
is Hospice input and involvement into domiciliary care service
ensures that patient care is of the very highest standard and
must be encouraged. This involvement should include access to
the hospice medical team for expert advise.
8. PALLIATIVE
CARE TRAINING
8.1 Many Community Nurses have training
in all aspects of palliative care; however, the majority of General
Practitioners have very little. Many GPs demonstrate a poor knowledge
and understanding of pain and symptom control. This lack of knowledge
can lead to poor patient care and stress for all those involved
whose experiences are affected by a poorly managed death.
8.2 The access, storage and disposal of
drugs also requires further understanding although clinical governance
departments are addressing this.
9. COMMUNICATION
9.1 Good communication skills are an essential
requirement for all staff involved with patients and their carers
but those in receipt of palliative care services need staff with
an exceptional ability to communicate.
9.2 Training in this area is very patchy,
on-going; training should be available for all staff.
10. CLINICAL
AUDIT
10.1 It is essential that data be captured
in order to promote continued improvement in clinical care.
10.2 Many staff lack the understanding,
the skills or the capacity to take a strategic overview on this
important area of their work. The profile of such work should
be raised.
10.3 Encouraging staff to critically analyse
the care given by all those involved using reflective practice
and discussion of specific cases would assist shared learning
and enhance services.
11. DISCRIMINATION
11.1 In most communities care given to patients
dying from cancer can always be improved but on the whole is good.
11.2 People in the community dying from
non-malignant diseases can receive to some extent a secondary
service. They are not eligible for many of the services used by
community nurses for patients diagnosed with a cancer.
11.3 In some areas much of their care is
undertaken by Social Service Carers or those from Private Domiciliary
Care services, with community nurses having much less involvement
and in some cases not even being aware of the patients' existence.
11.4 The CDNA believe that Palliative Care
patients should have equality, the disease is irrelevant and we
believe that all dying patients are entitled to have nursing care
from qualified community nurses.
12. CONCLUSION
12.1 District Nurses have 24-hour continuing
responsibility for patient care, their role is pivotal, and so
their role is key in the multi-disciplinary team. Patients require
a comprehensive service as each patient and their family have
differing needs.
12.2 The services available for dying patients
should be the same throughout the country including access.to
24-hour Nursing Care
12.3 All dying patients and their families
are entitled to receive assessment of their care needs and supervision
of their care from trained community nurses.
12.4 Integrated multi-disciplinary care
pathways should be developed in all Primary Care Trusts.
12.5 Drugs and equipment should be available
at all times.
12.6 There should be training on the Management
of pain and symptom control for all Health Care Professionals.
Specialist advice should be available out of normal working hours.
February 2004
| 
