R O Y A L C O L L E G E O F N U R S I N G

Promoting effective
teamworking for
children and their
families
Childrens
community
nursing
Royal College of Nursing
Community Childrens Nursing Forum
September 2000
Acknowledgement
The contributors would like to thank:
The children requiring home nursing and
their carers who teach us so much and
provide the incentive for the development
and expansion of services
The Royal College of Nursing Community
Childrens Nursing Forum and all the
community childrens nurses whose
information, encouragement, advice and
support have contributed to this publication
Karen Inniss who, undaunted, assisted us in
the production of the guide. Her experience
in assisting in other publications, papers
and in fund-holding, facilitated uniformity
and progress during the preparation of the
guide, turning chaos into order.
R O Y A L C O L L E G E O F N U R S I N G
1
Childrens Community Nursing
Promoting effective teamworking for children
and their families
1 Introduction 2
2 Who needs the service?
Profiling and needs assessment 3
Geographical area 3
Client caseload 3
Compiling a profile 3
Needs assessment and analysis 4
3 Models of service delivery 5
Range of models 5
Ambulatory paediatrics 6
Working with general practitioners 6
Nurse led clinics 7
Multi-disciplinary/multi-agency working 8
Children in schools 8
Children with life threatening or
terminal conditions 9
Non parent carers 9
4 Resource management 11
Human resources 11
Team working 12
Leadership 12
Clinical supervision 12
Team base 13
Equipment and consumables 13
Dependency and workload 14
Information management and
record keeping 15
5 Transition to home care 17
Discharge planning 17
Continuing care: eligibility criteria 17
6 Maintaining a quality service 18
Clinical governance 18
Users views 18
Report writing 18
7 Conclusion 19
References 20
Appendix 1: Patient/carer
satisfaction questionnaire 22
Appendix 2: Contributors 23
Contents
2
C H I L D R E N S C O M M U N I T Y N U R S I N G
1
This publication is a revised edition of a guide to
planning and developing community childrens
nursing services. Its predecessor, published in 1994,
was entitled Wise Decisions (RCN 1994). The guide is
aimed primarily at those establishing or
commissioning services, or reviewing and developing
existing services. More detail on the history, policy
context, approaches to care and methods of working
of community childrens nurses can be found in Muir
and Sidey (2000). A resource pack produced to
support the Diana Princess of Wales community
childrens nursing teams is also an invaluable
reference (ENB & DoH 1999).
Community childrens nurses (CCNs) are registered
childrens nurses with a community nursing
qualification who have direct involvement with the child
at home or in school, assisting parents to provide
treatment and monitoring the childs progress. They are
a readily accessible source of support, information and
advice for families. The CCN often acts as key worker for
children with complex needs, requesting input from
local paediatricians or general practitioners and
sometimes directly from the tertiary specialist.
Community childrens nursing has specialist
practitioner status (UKCC 1994).
As far back as 1949, a community childrens nursing
service was established in the UK, in Rotherham, in
response to concerns about cross infection in hospital
and associated infant mortality. The oldest continuous
service is the Paddington London Home Care Team
established in 1954, believed to be the longest running
CCN service in the world. There are now over 250 teams
established in the UK (RCN 2000).
Because of the lack of a national strategy, community
childrens nursing services have been established on an
ad hoc basis to meet local needs. CCN services function
differently in different areas, depending on local needs,
commitment, skills, resources and policies. An
opportunity to rationalise provision comes with the
advent of primary care groups and trusts (and their
equivalents in the other UK countries) which are
commissioning services for their locality. However,
CCNs need to be actively involved in ensuring that
these commissioners understand the benefits CCN
services can offer to children and their families.
This guide will help by sharing the lessons learnt to
date, beginning with ways to identify service needs and
describing the various models of service delivery which
have been established to meet those needs. Practical
issues such as provision of equipment and record
keeping are considered and the final section looks at
appropriate ways to evaluate CCN services. Examples
used in the text are offered as illustrations rather than
as validated models of practice.
Recommendations of the House of Commons Select Committee:
All children requiring nursing should have access to a community childrens nursing service, staffed by
qualified childrens nurses supplemented by those in training, in whatever setting in the community they are
being nursed.
This service should be available 24 hours a day, 7 days a week
Every GP should have access to a named Community Childrens Nurse (CCN)
House of Commons Select Committee (1997)
Introduction
2
Who needs the
service? Profiling
and needs
assessment
Community needs assessment and profiling are terms
that have been widely used in both health and social
care domains (Tinson 1995). Understanding the health
care needs of children and families and their need for
particular services requires:
A definition of the community to be served
(geographical area and client caseload)
Compilation of a profile of that community
Needs assessment based on the profile.
Geographical area
The area covered will depend on the model of service
delivery adopted by the CCN team (see Section 3). If the
team is acute service based, it is likely that the area
covered will be the catchment area of the acute
paediatric service. Generally, this will be large and
diverse, often covering both rural and urban areas and
including pockets of both deprivation and wealth. If the
team is based within the primary health care team or a
primary care trust, the practice population will be much
more specific.
Ad hoc development of services has meant that the
service delivery model has usually been decided before
the geographical area is defined. This may not be the
best way to define the community in the longer term as
it can lead to some areas being without a service and
others having services with the potential to overlap. As
commissioners review service provision, the
geographical area covered by a CCN team may be
defined in other ways.
Client caseload
The caseload will usually include children and young
people between 0-18 years with older clients in some
specially negotiated circumstances. It will be specific to
children with health care needs and the CCN team will
need to determine the parameters of their service in
relation to the sort of referrals they will accept and the
presence of other services such as specialist or respite
nursing services.
Consider whether the caseload will include:
Day case or inpatient surgery follow-up?
Children with life limiting/life threatening illnesses?
Acute paediatric illness?
Children with chronic conditions?
All of the above?
Compiling a profile
A profile is an outline sketch of the community in which
you will practice. It will aid the identification of need
and may be used to influence policy (Tinson 1995). It
considers aspects such as:
Demographic detail
Geographical location of different demographic
groups
Social, political and environmental influences
(Billings and Cowley 1995)
Sources for this data include:
Community health council
Health authority
Public library
Public health department
Unitary authorities for social services and education
Housing department
GP practices and primary care trusts in the area.
Establishing the current pattern of care is a key factor in
helping to determine the potential caseload of the CCN
team. Important data items include:
R O Y A L C O L L E G E O F N U R S I N G
3
Paediatric inpatient stays: numbers, length of stay &
reason for admission
Paediatric clinic attenders
Paediatric ward attenders: numbers & reason for
attending
Caseload of community paediatricians
Existing nursing services in the defined community.
Patterns of referral to established CCN teams provide
useful background information for this exercise.
Guidance documents produced by government,
professional and voluntary organisations will also be
helpful. One example is the report on childrens
palliative care services (ACT and RCPCH 1997) which
estimates that in a district with 50,000 children, 50 are
likely to have a life limiting condition with palliative
care needs.
During the profiling stage the information should be
gathered, sifted and recorded. If it is filed and accessible
it will become a well-used resource for all team
members. If it is to influence policy (for example, to
support the expansion of services), the profile must be
taken a stage further and assessed and analysed to
identify the needs of the community.
Needs assessment
and analysis
Need can be categorised in the following ways
(Bradshaw 1972):
Normative Need need based on the professional
perspective
Felt Need need identified by members of
the community
Expressed Need felt need that has progressed to
a demand for a service
Comparative Need identified by comparison with
another area (Hughes 1997)
Having compiled the profile with the relevant data for
the geographical community and the potential caseload,
this data can be analysed using a framework such as
PEST (Buchan and Grey 1990) addressing political,
environmental, social and technological influences.
Such a theoretical analysis (normative need) could
contain value judgements by the professionals and must
therefore be balanced by the views of actual and
potential service users (felt need).
Questionnaires and semi-structured interviews could
be used to obtain these views from:
Children and families
GPs
Health visitors
School nurses
Social services
Independent and voluntary agencies
Education authorities.
The completed needs assessment contains a variety of
evidence including: PEST analysis; quantitative and
qualitative data; and reference to current literature and
professional and government publications. This will
enable the CCN to present a balanced, evidence-linked
picture of the needs of the client group within the
broader community.
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C H I L D R E N S C O M M U N I T Y N U R S I N G
Range of models
Children attend hospital for a range of health care needs.
These include common childhood problems, such as
eczema, asthma, constipation and gastro-enteritis, and
more serious conditions requiring intensive or palliative
care. Advances in health care mean that more children
are surviving diseases which were once fatal. But these
children have long- term nursing care needs for
example, gastrostomy support for feeding problems or
tracheostomy and oxygen therapy for respiratory
problems, or a combination of these.
In some areas these children will be in hospital for long
periods of time. Whilst a hospital can provide a safe and
secure environment it also has limitations:
Separation of the child from family, friends and
other carers with potential lasting emotional and
psychological effects
Risk of infection to an already vulnerable child
Expense and stress for the family, with travelling to
and from the hospital; buying extra food during
hospital stays; providing care for siblings at home;
taking time off work
Medicalisation of the childs condition which could
otherwise be managed quite effectively at home
Disruption to normal family life (Atwell and Gow
1985, While 1991).
Research has demonstrated that when a child is cared
for at home the family adjust more quickly to a long-
term illness, that home care is a more effective use of
resources and care is individualised to the family
lifestyle (Atwell and Gow 1985, Anderson 1990).
Where CCN services have developed to support the
child and family at home, they tend to be in response to
local need and circumstances, rather than based on the
most effective model of provision. A variety of models of
community childrens nursing services have emerged
over the last decade and there is no single, perfect
model (see figure 1). A service may have up to 15 nurses
in the team or one or two nurses working in isolation.
The advantages and limitations of the variety of models
are well documented, however all studies note the
benefits and satisfaction for the family (While 1991,
Jennings 1994, NHS Executive 1998).
Figure 1: Components of the various models for CCN
services (Neill and Muir 1997)
R O Y A L C O L L E G E O F N U R S I N G
5
3
Recommendation from the Health Select Committee:
We recommend that the Department of Health should monitor for effectiveness and cost-effectiveness the various
local models and structures which currently exist, so that improved advice and guidance can be given to
purchasers and providers.
House of Commons Select Committee (1997)
Models of service delivery
Base
Community
childrens
nurse
hospital or community
Funded by
Charity
Generalist Specialist
Acute
trust
Community
trust
Ambulatory paediatrics
Ambulatory paediatrics is not a speciality in itself but a
philosophy of care driven by the wish of both parents
and health service to minimise time spent in hospital by
providing specialist paediatric care outside hospital and
short stay facilities inside hospital (RCPCH 1997). As
well as community childrens nursing, ambulatory
paediatrics may include day unit and acute assessment
facilities, consultant outreach clinics and walk-in
clinics. The future configuration and staffing of such
services have been the subject of much debate, as health
planners try to define the extent of need, and the best
way of meeting need in a modern health service (BPA
1993, 1996).
There are now many established day units and acute
assessment facilities which have had a significant impact
on quality of services to children. One example is the
Paediatric Admission Unit (PAU) established at Leicester
Royal Infirmary Childrens Hospital in 1994 (Carter
1997, Carter et al 1997). This was aimed primarily at
acute unbooked admissions and included follow up
clinics staffed by senior paediatricians. A family doctor
phone line was available one hour a day to answer
queries about paediatric cases in general practice.
Before the establishment of the PAU, children referred
by the GP were admitted through A&E into a bed
booked for them on the childrens ward and were not
seen by a doctor until they reached the ward. The PAU
enabled a rapid one stop admission process including
initial investigations and treatment. A higher proportion
of children were discharged on the day of admission
(40% against 20% before the PAU was established).
CCNs have a major role to play in all areas of
ambulatory paediatrics by promoting a philosophy of
home care rather than admission, treating and
monitoring children at home after discharge and
providing a Hospital at Homeservice. An example of
the working of this type of service is given below:
Hospital at home service
New Cross Hospital, Wolverhampton has a 55 bed
paediatric unit, which includes a six bed short stay
observation bay. This provides a base for the Hospital
at Home Team. Referrals to the observation bay come
largely from A & E and GPs. The Hospital at Home
team consists of three F grade sisters and three E
grade staff. The observation bay is open 24 hours a
day; staffed for the early shift (8-4) and the late shift
(3-11) by a member of the Hospital at Home team.
The nurse who worked the late shift works 10-6 the
following day, undertaking home visits, largely to
families met the previous day during her shift. At the
end of the day the nurse returns to the ward to liaise
with the late shift nurse who will undertake visits the
following day. The team operates a 7 day service. A
single patient record is used by nursing and medical
staff. Usual referrals are: children with
gastroenteritis, pyrexia, bronchiolitis and wheezing
illnesses. Children are visited for three days and if
there is no significant improvement in condition, they
return to the assessment area for review.
Working with general
practitioners
General practitioners are experiencing a rising demand
for on-call services, particularly in urban areas. This has
meant new ways of providing services have developed,
with greater use of deputising services, co-operatives,
and out-of-hours primary care centres (Hallam 1997,
Jessop et al 1997). Most general practitioners are aware
of the need to avoid admitting children to hospital
where possible and some have actively supported the
idea of a childrens nursing service to facilitate this. The
service described in the example below receives half of
its referrals directly from general practitioners, mainly
because of the strength of general practice in the area,
with a high proportion of general practitioners
providing their own on-call service.
CCN team working with general practice
Stafford District General Hospital has 34 childrens
inpatient beds. The community childrens nursing team
was established in response to concern from two GPs
who felt that they were admitting children
unnecessarily. The team consists of five whole time
equivalent nurses who take 1,000 referrals per year,
around 50% from GPs. A 7 day service is provided by
the team. There is an on-call service at night and the
nurse on call usually retains the children referred to
her as part of her caseload. Weekends are stressful, as
a single nurse is usually on-call from 9 am on Friday
until 9 am Monday. Some referrals are queries which
can be dealt with by phone; however at least one out
of hours visit is normal most nights.
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C H I L D R E N S C O M M U N I T Y N U R S I N G
The allocation of clinical responsibilities between
community childrens nurse, general practitioner, and
hospital or community paediatrician must be made
clear. It is not possible to set rigid policies because the
arrangements will be a matter for negotiation and
dependent on the needs of the individual child and
family. There is also, inevitably, some overlap in the roles
of different professionals. It is essential that the
community childrens nurse has easy access to these
doctors and is able to refer children directly to the
paediatric unit for admission if required. Good
communication between doctors is also needed,
independent of the liaison role of the CCN.
EXTENDED ROLES WITHIN PRIMARY CARE EXAMPLE
Following a review of service provision, a CCN was
contracted to provide care to the children of one
fund-holding practice and a minor ailments clinic was
established. In preparation, the GPs provided
training for the nurse on procedures including chest,
ear and throat examinations and identification of
simple skin conditions.
The clinic aims to provide an accessible, acceptable,
child-focused alternative to the GP appointment and
to empower parents in the self-management of minor
childhood conditions through advice and education.
The CCN can prescribe for minor conditions, based on
protocols agreed between the CCN and GPs. The
clinic is held three times a week, and parents are
offered 15 minute appointments. Following
consultation, children are either reviewed at the
clinic again or offered a home visit if appropriate. It is
now planned to extend clinic opening to five days a
week, and the training needs of the CCN are being
reviewed with a view to further extending the role.
Nurse led clinics
Development of nurse-led clinics run by CCNs has
rationalised approaches to common childhood
problems, and integrated the skills of various
professionals involved in the childs care.
For example, the development of a nurse-led
constipation clinic (Muir 1998) can bring together
many skills. Childhood constipation is a common
problem. It can comprise a significant proportion of the
CCN caseload and may account for up to 3% of general
paediatric referrals and up to 25% of referrals to
paediatric gastroenterology centres (Sullivan 1996).
Despite the high incidence, this condition is often
poorly understood, frequently inappropriately managed
and has a poor response to treatment.
In many areas, particularly where no CCN service exists,
children are regularly admitted to hospital for up to two
weeks for this recurring problem. Studies indicate a
treatment failure rate of 40%, with over half of patients
are still significantly constipated 12 months after having
started hospital treatment (Sullivan 1996).
Figure 2: Potential range of carers for one child
The potential range of people involved in the childs
management can make care difficult to co-ordinate (see
Figure 2). The development of an interdisciplinary
service co-ordinated by the CCN can lead to:
Skill-sharing between professionals in both hospital
and community settings
Improved efficiency of management.
An important priority is to establish a consistent
protocol of management that may be implemented
within and across trusts. Clinics staffed by CCNs may
take place either in hospital or community settings and
should have clearly defined, client-centred aims and
objectives (see example in box).
R O Y A L C O L L E G E O F N U R S I N G
7
Child with
Chronic Constipation
Paediatric
Gastroenterology
Team
General
Paediatrician
Community
Childrens
Nurse
Specialist
Outreach
Service
Inpatient
Ward Team
Ambulatory
Settings
Primary
Healthcare
Team
Other Carers
It is important to monitor the service to ensure that the
aims and objectives are being achieved. The limited
research available in other areas suggests that this
provision is both effective and satisfying to the
consumer (Hill 1997). This kind of provision could be
implemented in other areas such as asthma, eczema and
epilepsy management. If the nurse could prescribe
medicines within the clinic, practice would be more
efficient but Government direction is still required on
this issue.
The nurse-led clinic aims to promote child and family
empowerment as far as possible by providing:
Opportunities for families to network to reduce
feelings of isolation
Consistent health promotion and education
Ongoing liaison and support with members of the
primary care team
Continuity of care
Minimal disruption to the child through taking time
off school
Minimal disruption to the parents through taking
time off work
Home visits if and when required.
Multi-disciplinary/multi-
agency working
Co-operation within this multi-disciplinary/multi-
agency team depends on a mixture of formal and
informal working relationships. Informal networking
helps to develop a community of mutual interest,
understanding and respect. This is especially important
for a new community childrens nursing team whose
role may be seen to threaten established services such
as health visiting or district nursing. A commitment to
meeting other practitioners at an early stage in service
development is rapidly repaid.
Networks may give access to information and resources
not available through other channels, whether it is the
hospital ward prepared to lend a suction machine, or the
health visitor sharing her knowledge of local resources.
However, networks cannot guarantee the quality of
services provided to children and families. Such
assurance requires more formal working relationships.
The first essential step for the new CCN team is to make
their own role explicit by publicising their aims,
objectives, intended client group, and referral details.
Where the team offers a service focused on a particular
section of the child population, it may be helpful to
work with agencies to produce referral guidelines. These
are especially important if the team is receiving
inappropriate referrals, or when there is a need to raise
awareness of a service.
Key worker role
Families ask for a key worker who visits regularly, who
is approachable and accessible and who will listen. In
many districts it is only the CCN who fulfils all these
roles and who becomes the key worker in practice,
though not necessarily formally (NHS Executive 1998).
The notion of a named key worker is, at present, more
an ideal than a reality for most families. Informally,
many CCNs will continue to offer many of the essential
aspects of a key worker role though at times this may
lead to conflict with other practitioners.
Components of a key worker role (NHS Executive 1998)
To liaise between agencies
To co-ordinate service provision
To become a single point of reference for concerns
To be a source of information on local and regional
resources
To be an advocate, accompanying parents to meetings
and hospital visits to support and give confidence
To be a source of practical and financial advice
To provide personal support, especially by calling
regularly.
Children in schools
Parents or guardians have responsibility for their childs
health, and should provide schools with information
relating to their childs medical condition. In some areas
specialist school nurse roles have been created to
provide hands-on-care and meet the nursing needs of
children in schools. However, many CCNs also have an
important role in supporting a child with
medical/nursing needs in school. A large percentage of
the CCN teams caseload will be children of school age.
Liaison with school nurses needs to be as good as that
with health visitor colleagues. Part of the role of the
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C H I L D R E N S C O M M U N I T Y N U R S I N G
CCN may be to visit children in school or to educate
teachers/carers/other pupils in the needs of a child with
medical/nursing needs.
The Department of Health, and the Department for
Education and Employment have produced guidance for
schools supporting pupils with medical needs. Circular
14/96 (DfEE 1996a) summarises the legal framework
that affects schools responsibilities for managing a
pupils medical needs. It recommends that schools
develop policies and procedures, and suggests health
care plans, which include medication arrangements, are
provided for pupils with medical needs. A Good Practice
Guide (DfEE 1996b) has been produced to help schools
to put these recommendations in place, highlighting two
important issues:
1. There is no legal duty which requires school staff
to administer medication. Staff who provide
support for pupils with medical needs do so
voluntarily and must be provided with support
from the head teacher, and the childs parents,
with access to information and training
(paragraph 11).
2. School staff may require specific information or
training, and should not undertake such
activities without training from health
professionals (paragraph 80).
In many cases, the training will be provided by the
school nurse but there are instances when the CCN
should provide education and training, for example,
when a child with a less common problem requires
support, such as a child with a gastrostomy.
Children with life-threatening
or terminal conditions
Children with life-threatening conditions form a diverse
group, encompassing children dying from neuro-
degenerative disorders or congenital anomalies or
malignancies, as well as those growing up knowing their
life span is limited by slowly progressive conditions such
as cystic fibrosis or muscular dystrophy. The
Department of Health has invested in the development
or expansion of services to meet their unique needs and
a specific resource pack has been produced (ENB and
DoH 1999).
These children and their families require care which is
holistic, acknowledging the emotional and social
burdens of caring placed on the parents. From the
earliest stages of diagnosis, a balance must be kept
between the need to prepare for bereavement, to control
symptoms and optimise quality of life and the desire to
preserve life (Goldman 1994). In practice, many families
experience fragmentation of services, reporting barriers
to obtaining clear information, practical help, emotional
support, and respite care (While et al 1996).
Every family shall have access to flexible respite care
in their own home and in a home-from-home setting
for the whole family, with appropriate paediatric
nursing and medical support.
Every family shall access to paediatric nursing
support in the home, when required.
Extracts from the Charter of the Association for the care of
children with life-threatening or terminal conditions and their
families (ACT 1993).
A working party of the Association for the Care of
Children with Life-Threatening or Terminal Conditions
(ACT) and the Royal College of Paediatrics and Child
Health (RCPCH) (1997) proposed that each district
should establish a multidisciplinary paediatric palliative
care network capable of co-ordinating the health and
social care required. This might involve paediatricians,
childrens nurses, therapists, child mental health
professionals, other relevant professionals, spiritual
leaders and support groups.
A core group drawn from this network would provide a
key worker to each family and liaise with regional
centres and primary health care teams (Wallace and
Jackson 1995). Throughout the childs illness, respite
care should be available to families, on a flexible basis,
whether for a break of a few hours or for a longer
period. Respite care may be offered in the childs home
or at a childrens hospice or suitably staffed childrens
respite unit. Twenty-four hour nursing care should be
available to children during the terminal phase of their
illness (ACT and RCPCH 1997).
Non-parent carers
In some areas, unqualified carers support home care of
children with complex needs (NHS Executive 1998,
Rhodes et al 1998). The CCN is required to teach
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9
parents, the family and other carers how to deliver safe
and effective care. Ongoing support and regular
updating in delivering this care is essential for all carers.
With no national guidance, health authorities have
developed local guidance which has led to variations in
training and therefore in provision (Townsley and
Robinson 1997). Networking between CCNs in other
areas will lead to the development of consistent,
national protocols for training, such as that cited by the
Department of Health in its review of pilot work for
children with life threatening illnesses (NHS Executive
1998), and definition of acceptable levels of
competence.
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C H I L D R E N S C O M M U N I T Y N U R S I N G
Resource
management
Human resources
The most valuable resource in the CCN team is the staff
and their skills. Those leading and providing the service
need to be educated in both childrens and community
nursing. This has been recognised by the UKCC with the
development of a unique community childrens nursing
course (UKCC 1994). The amount of clinical experience
required to take up post as a CCN will depend on the
skillmix of the team and the availability of supervision
for less experienced staff. All team members need
regular updates to maintain their expertise and they
should receive support through regular clinical
supervision, especially if practising alone (DoH 1996,
ACT & RCPCH 1997).
Efficient and effective use of human and other resources
requires:
Good team working
Effective clinical and professional leadership
Clinical supervision
A suitable base
Access to a reliable source of consumables and
equipment
Ongoing estimation and prediction of dependency/
workload planning
Good record keeping and information management.
Skillmix, caseloads and organisation of the team will
depend on the client profile, the number of nurses in the
team and the type of service being funded. There are
advantages and disadvantages in individual team
members specialising solely in particular care groups
such as asthma or cancer and these should be carefully
considered in the context of the total service.
Play specialists
When considering the make-up of the community
childrens team, other specialists may be appropriate to
include. In 1993, Stoke Mandeville Hospital took the
initiative to expand the hospital play service into the
community by creating a full-time community play
specialist position. The post was based within the
community childrens nursing team with accountability
to the team manager. Community play standards were
developed alongside specific documentation designed
to enable ongoing evaluation of the service.
Referrals covering a range of situations such as
preparation for hospital, phobic children and distraction
therapy, come from paediatric consultants, health
visitors, CCNs and the childrens wards. Individual play
programmes are designed in conjunction with each
family and sibling and parent involvement in the play
care is always encouraged. A number of sibling support
groups have also been formed: one for siblings of sick
children with life-threatening conditions and another
offering bereavement support for children following the
death of their brother or sister. Scrapbooks and memory
boxes are introduced to help the sibling work through
their experience of bereavement. The use of play offers
an holistic approach to care in the community, meeting
not only the needs of the sick child but also of siblings
and other family members.
Examples of play therapy in the home
1. An oxygen dependent child was discharged home
from paediatric intensive care with a tracheostomy
tube. The childs sister had difficulty in
understanding the situation, so a doll was adapted
with a tracheostomy and oxygen especially for her.
Special times were introduced with the play
specialist involving 40 minutes of one-to-one
support for the sister, allowing her to work through
her sisters experience.
2. A baby boy with multiple-handicaps who was not
expected to live for long was discharged home at
his parents request. They asked for play ideas. Play
visits enabled the family to enjoy foot and hand
painting sessions, as well as messy play
techniques, which the young baby showed pleasure
in doing. Photographs taken during the session
have given the parents treasured memories.
Funding
The Audit Commission (1993) suggested that funding
for CCN teams could be found through saving in other
services, such as a reduction in inpatient services once
the team is established. Unless acute and community
R O Y A L C O L L E G E O F N U R S I N G
11
4
services are combined in a single trust, funding teams
in this way can be difficult. Other sources of funding to
establish teams have been charities or voluntary bodies
and specialist services such as oncology. Given the
responsibilities and expertise of the majority of these
nurses, they can expect to be paid on at least equivalent
terms to health visitors.
Team working
A team is defined by its common purpose. Every team
needs a shared vision, giving a sense of cohesion and
uniqueness that binds individuals together. Team values
need to reconcile the values of individual team
members, the priorities of the organisation, and the
needs of the client group. Added to the profile of the
client group, the location of care and the analysis of
needs, the team needs to agree on their answers to some
simple questions:
Who are we? What are our unique qualities,
qualifications, interests and enthusiasms?
What do we do? What exactly are we offering and
how does our role differ from that of other
community nurses?
How do we do it? Consider the technical,
interpersonal, and educational skills, and our
commitment to multi-disciplinary and multi-
agency working.
The answers contribute to a team philosophy and can be
used to communicate the teams public face. They also
contribute to the policies, protocols, and audit measures
necessary for collaboration, marketing and ensuring
quality.
During the first months in the life of a new team, there is
often a strong sense of common purpose which sustains
the drive and enthusiasm of its members. As time goes
by, and work pressures increase, tensions and
disagreements will arise. A failure to invest in team
building and address communication problems can lead
to escalating ill feeling and a breakdown in co-operation.
Basic organisational measures can facilitate team
collaboration:
Regular team meetings
Monitoring individual workload
Allocating and sharing workload.
Leadership
Relatively few community childrens nursing teams are
large enough to sustain a full-time team leader.
Commonly, teams are managed as part of a paediatric
hospital unit or community nursing service. As NHS
management structures become leaner there is a risk
that line management responsibility becomes more and
more distant from day to day team function. The
manager may not have the time or the specialist
knowledge to assist the team in maintaining its drive,
purpose and motivation.
The need for a team leader
The Reading Community Childrens Nursing Service
was initiated in 1990 with three whole-time-equivalent
(WTE) G grade posts. Over the next eight years the
team expanded to 6.3 WTE nurses, including F grade
nurses and administrative support. With growth the
team became increasingly aware of the need for
designated leadership. A team leader was appointed
in 1993. The leader offers a representative voice for the
CCNs and the practice expertise to carry the team
forward.
In the absence of a formal leader the community
childrens nursing team may agree to share and rotate
co-ordination responsibilities. One example is the team
chairperson who ensures team meetings take place,
keeps meetings productive, involves all team members,
and checks progress with delegated tasks. All team
members need to accept the importance of co-
ordinating their efforts.
Clinical supervision
Individual team members must be encouraged to
pursue personal and professional growth and
development in line with the UKCCs recommendations
on Post Registration Education and Practice (UKCC
1994).
Whilst the working day of the Community Childrens
Nurse (CCN) is primarily concerned with care delivery,
an essential aspect of the work should be to both offer
and accept support and supervision from colleagues.
Staff morale determines the efficacy of the service
delivered to clients thus it is cost effective to resource
support initiatives such as clinical supervision.
12
C H I L D R E N S C O M M U N I T Y N U R S I N G
The overall goal of clinical supervision is to sustain and
develop clinical practice by offering the formal
opportunity to discuss work informally with a
colleague. This has three aims:
to safeguard standards of practice
to develop professional expertise
to ensure the delivery of quality care.
There is extensive literature on implementing clinical
supervision so detail is not provided here but it is
essential that it is introduced by local agreement, not as
a management imposition.
Potential benefits of clinical supervision
1) Improvements in patient care and satisfaction by:
monitoring practice by regular discussion
reflection to examine and evaluate practice
development of practice by identifying
developmental needs.
2) Development of the potential of:
the individual, to use and extend their skills
the organisation, to have effective, dynamic staff
the profession, by the regular examination and
development of practice.
3) Supervision may also contribute to:
reducing sick leave and absence
performance appraisal
identifying education and training needs
helping develop constructive dialogue between
staff
increasing work satisfaction, retention and
recruitment
helping staff to cope with work pressures.
Team base
The team needs a base that is suitably sited to provide
adequate office space, safe storage of equipment and
good communication systems, including telephone
answering machine and mobile phone or radio pager.
The personal safety of team members should be
addressed with reference to professional guidelines and
local policy (RCN 1998a).
Increasingly, trusts require computer records of
contacts, episodes and other information. Data needs to
be carefully tailored to meet the demands of the team
and trust. Data entry is time consuming and clerical
help is invaluable in keeping records updated. Adequate
secretarial provision should therefore be made.
Equipment and consumables
Access to equipment is a major issue for CCN services,
as the Audit Commission (1996) identified. The Health
Select Committee (House of Commons 1997)
recommended that the Government should issue
guidance regarding the local need and availability of
equipment, improved equipment management and
providing a service that is easily identified by families
and professionals. Issues concerning resources,
consumables and equipment need to be adequately
researched to meet the needs of the community profile.
At present, each health authority may identify funding
for equipment in different ways. For example, in
Southampton, a sum of money is top-sliced from each
GPs budget and given directly to the CCN service. The
overall advantage of this approach is that the team is
able to monitor their supplies very closely to ensure
equipment is child specific and correctly serviced and
maintained. However, current funding arrangements are
set to change with the emergence of primary care
groups/trusts when local agreements will need to be
negotiated.
Prescribable supplies and drugs
Although the doctor with clinical responsibility for the
patient should be the one who prescribes (NHS
Executive 1991), this situation may change with the
development of nurse prescribing. At discharge, the
paediatric unit should provide enough drugs and
supplies to last the child one week, until they can obtain
more from the GP. GPs are able to prescribe for all
patients who are at home unless:
i. The drugs are part of a hospital-based clinical trial
ii The response to treatment must be closely monitored
by the hospital or
iii Where the drugs or suppliers are only available
through hospitals (NHS Executive 1995).
Prescribable supplies are listed in the British National
Formulary and Drug Tariff.
R O Y A L C O L L E G E O F N U R S I N G
13
Nurse prescribing
The Crown report (1999) on the review of prescribing,
supply and administration of medicines recommended
that prescribing powers be extended to other
professional groups with appropriate regulation and
training with the aim of improving continuity and
patient choice. The implications of these proposed
changes for CCNs and other professionals are currently
being considered.
Medical equipment and non-prescribable supplies
As part of the discharge planning process, the childs
need for medical equipment and non-prescribable
supplies should be assessed and the source of supplies
identified. High cost care should be negotiated through
the health authority, for continuing care funding see
section 5.2.
Re-use of Equipment
The Health Select Committee recommended that the
Medical Devices Agency should introduce a requirement
that the labelling of devices should clearly indicate
whether they are licensed for:
Single use only
Single patient use (with the maximum number of
times specified)
Multiple use by more than one person (with the
maximum number of times specified).
Labelling should also indicate proper procedures for
cleaning the devices and other information about its
use. Such guidance should be supplemented and
endorsed as part of the local infection control policy
and a full risk analysis documented.
Dependency and workload
Patient dependency is defined as an assessment of a
patients ability to care for themselvesand nurse
dependency as ...embracing the patients total need for
nursing care including education, rehabilitation and
psychological care (RCN 1995). Nursing workload is an
estimate of the nurse hours required to provide the
required level of care. This takes into account:
Child and family need for care
The quality of the care
The skill mix to provide it
The time to deliver it.
Nursing work is not easy to quantify and dependency
scores can provide concrete information about the work
of the CCN team. Scores can be used to assist in
planning daily/weekly workloads, retrospectively as
evidence for expanding a team, or as a guide to
managers as part of an annual review. To work
successfully a dependency scoring system must
encompass physical, psychological, spiritual and social
dimensions. These however, will be influenced by the
philosophy, geography, skill mix, culture and working
system of the team. The following diagram may provide
some triggers to those developing their own workload
calculation tool:
Figure 3: Considerations when calculating workload
(adapted from RCN 1995)
A dependency tool that accurately reflects the work of
CCNs has not yet been developed. There are tools for
district nursing, and these may be transferable to CCNs.
The adaptation or development of a dependency tool
specifically for community childrens nursing would
provide a much-needed national standard.
Where the team cannot offer 24 hour, 7 days-a-week
cover, it must specify the ways in which continuity of
care will be assured. For some children this may entail a
14
C H I L D R E N S C O M M U N I T Y N U R S I N G
Patient dependency
Nursing dependency
Childs condition
and family needs
Interventions:
- hands-on care
- support
- teaching
Co-ordinating
equipment/supplies
Travel time
Teaching and
support of
colleagues
and students
R&D / audit
activities
Clinical
supervision
Reporting
& record
keeping
Multi-
disciplinary
/multi-agency
communication
return to hospital, for others care may be shared with
adult district nursing services. Hand-over and teaching
may be required for district nurses with little recent
experience with children, and team workload
calculations need to take this into account. The team
should specify and monitor situations in which it is
acceptable for a CCN to work outside their contracted
hours.
Besides the teams workload, staffing levels must be set
to include cover for sickness, holiday and study leave.
Non-clinical time for such activities as professional
development, supervision of students, administrative
tasks and team meetings should be added into the
workload calculations.
Each team needs a system for monitoring the pressure
of work on each nurse, including:
Numbers of highly dependent or vulnerable families
Amount of child protection work
Numbers of children with life threatening or life
limiting conditions
Non-clinical aspects of work
Amount of time worked outside contracted hours
Caseload turnover.
Stress and fatigue have a negative effect on motivation
and may lead eventually to burnout. If the team
identifies excessive work pressure building up, it must
take action. This may include shared care, re-
distribution of workload, limiting referrals and, for the
long-term, bids for more resources.
Information management
and record keeping
Different approaches to record keeping are used
depending on policies within the CCN teams area of
work. Some use care-plans from the childrens wards
and continue with these in the community, others have
devised their own system and others use generic
community records. In some areas, the record has been
adapted so that it can be included in the child health
record book which parents hold for under fives. These
child health records are also being developed further for
the older child. Shared records such as this are
becoming more widespread as they support continuity
and collaborative care delivery.
Whatever format is used, the records should reflect the
needs and progress of the child and must take account
of professional guidelines (UKCC 1998, NHS Executive
1999). They should incorporate:
Contact and demographic information
Nursing assessment of the child and families needs
Identification of care needs
Evaluation of care delivered
Message sheet
Medication chart.
The teams philosophy may also be included.
The childs records should be kept in the home, unless
this is felt to be unacceptable or unsafe. There is strong
evidence to suggest that records kept in the home are
rarely lost or destroyed. However, if they are lost, the
consequences are potentially devastating, so a further
record of CCN visits and an outline of care should be
kept at the office base. These notes should include any
pertinent changes and also a record of telephone triage
pertaining to the family. This is necessary to:
Provide a secondary source of evidence if necessary
Inform colleagues of care required should the
primary nurse be unavailable
Provide information for managing the service.
Once the care is completed (i.e. if the childs problems
are resolved or the child dies) the full record needs to be
retained and kept for a minimum of 25 years, as it may
be required for audit and for legal purposes, for
investigation of complaints and issues of child
protection.
Increasingly, nurses are required to demonstrate
positive outcomes as a result of their interventions. The
complete record is evidence of what was done for the
child and family, why, and with what result. Besides
good outcomes, the record can be used to demonstrate
gaps in service for example, an unnecessary stay in
hospital or hospital/GP attendance because of the
absence of the particular skills or support provided by
the CCN team.
Over the years CCN teams across the UK have developed
records and information sheets/resources which they
have tried and tested (see table). Most teams are happy
to provide examples of their stationery for new teams to
modify for their own use. Pharmaceutical companies
produce information for parents for example, for
R O Y A L C O L L E G E O F N U R S I N G
15
children with diabetes or those on growth hormone. But
if you wish to use pharmaceutical company
information, you must check with your employer that
this is permitted.
EXAMPLES OF RECORD AND INFORMATION
SHEETS/RESOURCES:
Referral form
Notes front sheet/initial assessment
Nursing care plan
Record sheet fitting the National Parent Held Child
Health Record
Discharge to home care: checklist to be kept in
hospital notes
Information for hospital and community staff about
the CCN team
Liaison letters for GP, health visitor and school
nurse
General information for parents about the CCN
team
Information for parents (e.g. care after day surgery
and short stay surgery, apnoea monitoring, burns
and scalds, gastroenteritis, febrile convulsions,
home nebuliser, asthma, enteral feeding,
tracheostomy care, anaphylaxis, leaving SCBU,
play, useful addresses and contacts)
Information sheet about relevant local services for
parents.
16
C H I L D R E N S C O M M U N I T Y N U R S I N G
The transition
to home care
The poor quality of hospital discharge planning is a
universal complaint of families and community
childrens nursing teams. When children have complex
needs it is often necessary to adopt hospital in-reach
where the CCN takes an active role in initiating the
discharge planning process. Often CCNs need to
demonstrate to their hospital colleagues that they are
the experts when it comes to the comprehensive and
effective planning of home care. This area has been
highlighted in recent research (Procter et al 1998).
Discharge planning
Discharge to home care should always be considered as an
alternative to hospital care. Any child discharged with
medical equipment should be referred to the CCN team so
that continued advice and support can be offered. Parents
are often required to assume 24 hour responsibility for
their childs care (NHS Executive 1998). They may need to
learn complex nursing skills, such as tracheostomy care,
oxygen therapy and administering intravenous
medications. For children with complex needs the
situation is further confused by the number of different
health, social and education professionals involved.
Principles for planning effective transition from hospital
to home care include:
Each child should have a named nurse, or key
worker, with responsibility for co-ordinating
discharge, beginning on admission and
communicating with all professionals involved
Patient and carers are prepared so that they feel
confident and are competent to take on agreed roles
and care following discharge
The level of support and supervision required is
assessed before discharge to estimate dependency.
Key considerations when planning discharge of children
who require ongoing nursing care or support:
Care planning in relation to the childs age, ability
and condition
Appropriate resources for the family and home
circumstances: respite care, equipment etc
(including maintaining safety and servicing of
equipment)
Education and support needs of the family and
other carers
Funding and financial issues
Responsibility for medical supervision.
It is important that all communications are clear, legible
and complete. Verbal instructions should be confirmed
in writing. When a child is referred to the CCN team,
details of nursing care required and referral should be
included in the discharge letter to the GP.
Continuing care:
eligibility criteria
Continuing care was identified as one of the six national
priorities for the NHS (NHS Executive (1995). A primary
focus of the policy is to develop consistent
arrangements, to clarify and fund NHS nursing care and
to distinguish this from social care. To disentangle health
and social care, health authorities were required to
develop and publish local eligibility criteria and develop
appropriate services to meet the needs identified.
However, these have generally failed to acknowledge the
continuing care needs of children. An example of
eligibility criteria for children requiring continuing
home care is available in NHS Executive (1998).
Should the child be eligible for continuing health care, a
specific assessment will take place before they are
discharged from hospital. The NHS will then fund care
either wholly or partly. Criteria for enhanced health care
funding can be obtained from the local health authority
in each area. These should be specific to each child. The
CCN can play a pivotal role as advocate for the child and
family in this process.
Funding issues and disputes should be avoided at all
costs through the development of agreed, child-
specific guidelines, so that adequate care is continued.
This is especially pertinent for those children with
severe learning disabilities, currently in special
schools, who may be included into mainstream
schools. The RCN is presently developing guidance
specifically related to the continuing health care needs
of children and young people.
R O Y A L C O L L E G E O F N U R S I N G
17
5
Maintaining a
quality service
Clinical governance
Professional accountability requires all nurses to
demonstrate that they have delivered a high quality
service. The Governments clinical governance agenda
places a duty on all health care professionals to ensure that
care is satisfactory, consistent and responsive (Department
of Health 1998). Since April 1999, primary care groups and
trusts have had to guarantee quality of care through the
processes of clinical governance (see RCN 1998b for
further information). The processes include:
Clinical effectiveness
Clinical risk management and complaints
Outcomes of care
Good quality clinical data.
The CCN team needs its own quality agenda based on
these processes and it must provide evidence of quality
care in the form of annual reports. In developing a
quality agenda you need first to identify the dimensions
of quality in healthcare and then how you will measure
or monitor quality to identify whether improvements
are necessary. Maxwell (1984) suggests that quality
health care should incorporate consideration of:
Equity
Accessibility
Acceptability
Efficiency
Effectiveness
Appropriateness.
In each of the areas mentioned, standards or
benchmarks are needed to monitor quality. Local
standards, relevant to the type of service and based on
the teams objectives, can be developed by the team in
conjunction with users and managers (Johns 1992).
Benchmarks require a collaborative effort between
teams so that each can measure quality improvement
against the performance of others, or an ideal
performance (Ellis 2000).
Users views
The moves to ensure customer satisfaction within health
care have led to the development of charter standards,
satisfaction surveys and other ways of obtaining user
feedback on services. One such method is the use of story
telling (narrative) (Adair 1994) which acknowledges the
principle that quality is what the customer says it is
(Melum and Sinioris 1992). Satisfaction surveys have
limitations but there are some good examples of
questionnaires developed for children of different ages to
give their views on different kinds of services (e.g.
Appendix 1 provides an example of a survey tool. Hogg
1997). Children and their families, as primary users of
CCN services, can provide a view on each of the areas
above, but they will not be able to provide an evaluation
of the whole service their views are part of the picture.
Report writing
To demonstrate the provision of a high quality service,
audit results and user feedback must be conveyed to
others. An annual review provides the ideal opportunity
to reflect on the service to enable planning for the
following year. The report also provides a useful
measure of the work carried out over the previous year.
Having produced annual reports on the service I
would have to say that whilst they are time
consuming they are invaluable for reference
purposes and they can be used as a measure of our
progress. It can also be very rewarding to compare
reports and realise the developments the team is
making.
Reflections from a Team Leader.
SUGGESTED STRUCTURE FOR ANNUAL REPORTS:
1) Executive Summary
2) Current situation; establishment, hours worked,
current status of referrals
3) SWOT analysis (Strengths Weaknesses
Opportunities Threats)
4) Caseload profile for the previous year
5) Previous years budget statement
6) Work patterns of team members
18
C H I L D R E N S C O M M U N I T Y N U R S I N G
6
7) Quality review
8) Methods of communication within the team
9) Educational issues: placement of students;
teaching roles of team members;
lecturer practitioner/community practice teacher role
10) Aims for the following year
11) Conclusion.
Conclusion
Care at home and in community settings is a vital
component in the provision of a seamless health care
service for sick children. The content of this guide
reflects the tasks and issues to be faced by those
undertaking the challenge of establishing new services
or reviewing and developing existing ones. In a health
service continually subject to funding constraints, those
involved in service delivery and management need to be
able to comprehensively describe and justify services.
Establishing a strong case for community childrens
nursing requires assessment of need and the ability to
use results to set objectives. Monitoring and reporting
on the achievement of objectives can ensure the firm
establishment and continuity of services.
The determination and persistence of individual
practitioners and families are among the most
important factors in establishing and maintaining home
care. Service delivery is expanding but continued efforts
are required as we aim towards a comprehensive
childrens nursing service for every sick child who
requires care at home and in other community settings.
R O Y A L C O L L E G E O F N U R S I N G
19
7
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Appendix 1
An example of a Patient/Carer Satisfaction
Questionnaire (from the Royal Berkshire and
Battle Hospitals NHS Trust)
In an effort to maintain the quality of our service we
would be grateful of you would complete the following
questionnaire. The information you give will be treated in
the strictest confidence and only used for the purpose for
which you have provided it.
Please tick
1 Are you: the patient?

parent/guardian?

other?

2 Patients age? .
3 How long has the community childrens nurse been
visiting you? i.e days/weeks/months
4 Why is /was the nurse visiting?
5 Has the number of visits been appropriate to your
needs? Yes?

No?

Please comment
6 Were the lengths of visits appropriate to your needs?
Yes?

No?

Please comment
7 What were your expectations of the community
childrens nurse prior to her visit?
8 Have you had adequate written and verbal advice
about your/your childs care needs? Yes?

No?

9 Has the nurse offered support appropriate to

No?

10 Have you felt able to discuss your/your childs care?

No?

Please comment
11 Have you experienced any problems contacting the
nurse or with the service the team provides?
Yes?

No?

Please comment
12 Are there any changes to the service which would be
helpful to you / your child? Yes?

No?

Please comment
Please add any further comments you may wish to
make:
Thank you for your help.
22
C H I L D R E N S C O M M U N I T Y N U R S I N G
Appendix 2:
Contributors
Sue Burr RSCN. RGN. RHV. RNT. MA. OBE. FRCN.
Advisor in Paediatric Nursing, Royal College of
Nursing
Sue Facey RGN. RSCN. DN. Dip.N. (London) BSc (Hons)
Community Childrens Nurse/Team Leader, Swindon
and Marlborough NHS Trust
Angela Garrett RCN. RSCN. RM. DN Cert. PWT.
Head of Service, Community Childrens Nursing,
Guildford
Julie Hughes RGN. RSCN. Dip N. BSc (Hons) PGCEA
Community Nursing.
Lecturer/Practitioner, Community Childrens
Nursing, Reading
Sarah Hughes RGN. RSCN. BA(Hons) DN CPT.
Community Childrens Nurse, Reading
Karen Inniss
Administrator and assistant to the project
Julia Muir RGN. RSCN. BA (Hons).
Senior Lecturer, Community Childrens Nursing,
Oxford Brookes University
Nigel Northcott RGN. Dip N. MA(ed) PhD.
Independent Nursing Consultant and Practitioner
Julie Plant RSCN. RGN. DPSN (CHS). DN Cert.
Manager, Community Childrens Nursing Service,
Birmingham Childrens Hospital NHS Trust
Brian Samwell BA (Hons) RGN. RSCN. DN Cert. PGCE
Clinical Community Nurse Manager, Edinburgh Sick
Childrens Trust
Helen Shipton
Community Play Specialist, Community Childrens
Nursing Team, Stoke Mandeville Hospital,
Buckinghamshire
Anna Sidey RSCN. RGN. DNCert.
Lecturer/Practitioner, Community Childrens
Nursing. Nene University College. Northampton &
Independent Healthcare Consultant
Maybelle Tatman MBBS. MSc. MRCP. FRCPCH.
Consultant Community Paediatrician, Coventry
R O Y A L C O L L E G E O F N U R S I N G
23
Reprinted January 2003
Published by the Royal College of Nursing
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The RCN represents nurses and nursing,
promotes excellence in practice and shapes
health policies.
Publication code 000 878