APPENDIX 42
Memorandum by the Royal College of Nursing
(PC 62)
1. INTRODUCTION
1.1 With a membership of over 360,000 registered
nurses, midwives, health visitors, nursing students, health care
assistants and nurse cadets, the Royal College of Nursing (RCN)
is the voice of nursing across the UK and the largest professional
union of nursing staff in the world. RCN members work in a variety
of hospital and community settings in the NHS and the independent
sector. The RCN promotes patient and nursing interests on a wide
range of issues by working closely with Government, the UK parliaments
and other national and European political institutions, trade
unions, professional bodies and voluntary organisations.
1.2 As well as specialist palliative care
nurses and paediatric palliative care nurses, nurses in all settings
and district nurses in particular play a vital role in co-ordinating
services and providing care to the dying. We have focused on three
main themes related to the provision of palliative care which
we hope will be useful to the Committee. These are:
— Issues of choice in provision, location
and timeliness of palliative care services, including support
to people in their own homes.
— Workforce issues, including the supply
and retention of staff and the adequacy of training programmes.
— The impact and effectiveness of government
policy, including the National Service Frameworks, the Cancer
Plan and NICE recommendations.
2. ISSUES OF
CHOICE IN
PROVISION, LOCATION
AND TIMELINESS
OF PALLIATIVE
CARE SERVICES,
INCLUDING SUPPORT
TO PEOPLE
IN THEIR
OWN HOMES
2.1 Patients do not always have adequate
choice in palliative care. Differing provision across the UK has
created a system where the level of palliative care received is
often dependent on location. Nurses want to ensure that all their
patients receive the appropriate high standard of care wherever
they live.
2.2 Many palliative care services originated
from local voluntary organisations and voluntary hospices continue
to provide around 75% of inpatient palliative care services. Although
this model served to stimulate provision of palliative care services,
provision is sporadic and frequently dependent on the fundraising
capabilities of the local communities. Further, charitable funding
is directed at the patient group for or by whom funds are raised,
and many adult palliative care services cater only to cancer care.
For example, studies into palliative care for patients with chronic
obstructive airways disease (COPD) have shown that COPD patients
are often stranded at home with little support[24].
The RCN's Palliative Nurses Forum has been active in lobbying
for increased services for patients with a non-cancer diagnosis.
2.3 Community palliative care nursing teams
are not universally in place across the UK and often general care
is given to patients rather than specialised palliative care.
This leads to increased workload for district community nursing
teams, often leading to burnout for staff who are not adequately
trained or supported in dealing with specific palliative care
issues.
2.4 Because of this shortage of specialist
teams, discharge of patients is often hampered as processes are
not in place to enable patients to go home. This leads to increased
pressure on primary healthcare services, but more importantly
patients do not have the appropriate care or support they require
at this time in their lives. Frequently the choices for home care
are limited, and patients are often moved into residential care,
which can cause emotional distress to patient and family.
2.5 Paediatric palliative care is special
in several ways:
— The number of children dying is small
compared with adults.
— Many of the conditions are extremely
rare with diagnoses specific to children.
— Time scale of illness different is
to adults—palliative care may last a few days or months
but may extend over many years into early adulthood.
— Many of the illnesses may be familial—so
more than one child in a family may be affected.
— Care embraces the whole family—parents
and siblings carry a heavy responsibility for personal and nursing
care.
— Provision of play and education is
essential for children who are sick.
2.6 As with adult palliative care services,
there is variable provision across the country for paediatric
palliative care. Specialist services for children and young people
needs to be a specific focus of commissioning. Clear mechanisms
for accessibility and funding of medications, medical and nursing
supplies, equipment, aids, and respite care should be identified,
as families are often caught up in bureaucratic disagreements
between health, education and social services about funding.
2.7 Knowledge of the epidemiology of children
with life limiting conditions is improving, but sound data on
morbidity is still not available. Current information suggests
that, in a district with 50,000 children, eight are likely to
die in a year as a result of a progressive condition for which
palliative care is appropriate. Commissioners could work with
local providers to establish a local database of these children
and young people.
2.8 Our recommended model for children and
young people's palliative care services would be a locally based
multi-disciplinary team with ready access to a children's hospice,
and to specialist palliative care advice for families and professionals
when needed. Most of the day to day care should be provided in
the community, with specialist children's community teams working
in conjunction with primary care team, social services and education.
Key workers are needed to ensure that provision is planned, co-ordinated
and appropriate. Families should have access to a range of flexible
respite care, including respite at home, in a children's hospice
and through social services. Some children's hospices currently
have extremely restrictive criteria (such as the expected life
span of the child) meaning that some families cannot gain access.
3. WORKFORCE
ISSUES, INCLUDING
THE SUPPLY
AND RETENTION
OF STAFF
AND THE
ADEQUACY OF
TRAINING PROGRAMMES
3.1 Whilst palliative care is a popular
area of nursing, the work is intensive with high levels of stress
and burnout in staff. To guard against this, the RCN is calling
for managers to ensure appropriate support is made available to
all staff. Some nurses choose to have breaks from palliative care
and this should be facilitated so that they feel encouraged to
return to the practice at later date.
3.2 Specialist palliative care nurses are
trained in pain and symptom control and to give emotional support
to patients and their carers. A palliative care nurse will be
a registered nurse with a post-registration palliative care diploma.
A palliative care nurse specialist will have a post-registration
specialist degree.
3.3 Agenda for Change and Career and Competency
Frameworks could encourage staff to develop their skills and become
specialist practitioners, taking on skilled roles in palliative
care nursing. Skilled staff who are appropriately supported by
management and receive financial rewards for their skills remain
longer in these types of nursing posts.
3.4 Career progression for palliative care
nursing staff can be difficult. The RCN is developing a careers
and competency framework which is linked to the Knowledge and
Skills Framework under Agenda for Change. This will promote career
pathways and develop nurses at all levels to be skilled practitioners
in palliative care.
3.5 In addition to specialist teams, the
RCN Cancer Nursing Framework launched in 2003 calls for nurses
working in all primary care settings to have specific training
on cancer and palliative care. This would allow for improved and
rapid referral systems to be in place and lead to a greater workforce
of skilled primary care nurses with expertise in palliative care.
3.6 Children's nurses also need to have
appropriate post-registration education and training. There is
a need to establish greater numbers of specific courses that are
focused on children and young people, and on families.
3.7 Most palliative care nurses work in
the independent and voluntary sectors. As NHS nurses see their
pay and career opportunities improve under Agenda for Change,
independent sector employers may need to revise terms and conditions
for nurses to remain competitive.
4. THE IMPACT
AND EFFECTIVENESS
OF GOVERNMENT
POLICY, INCLUDING
THE NATIONAL
SERVICE FRAMEWORKS,
THE CANCER
PLAN AND
NICE RECOMMENDATIONS
4.1 The RCN Palliative Care forum has been
very involved in formulating the NICE guidelines on palliative
care.
4.2 Recent care blueprints and especially
the National Cancer Plan have had a positive influence on the
planning and provision of palliative care services. However while
some funding has been made available it has not always been felt
on the front line of care. It is essential that new money is properly
disseminated to the parts of the service where it can make a real
difference to patient care.
February 2004
24 Cotton MM et al (2002) Early discharge for patients
with exacerbations of chronic obstructive pulmonary disease: a
randomised controlled trial Thorax 55: 902-906. Back
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