000878

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

Promoting effectiveteamworking forchildren and theirfamilies

Childrens communitynursing

Royal College of NursingCommunity Childrens Nursing Forum

September 2000

Acknowledgement

The contributors would like to thank:

The children requiring home nursing andtheir carers who teach us so much andprovide the incentive for the developmentand expansion of services

The Royal College of Nursing CommunityChildrens Nursing Forum and all thecommunity childrens nurses whoseinformation, encouragement, advice andsupport have contributed to this publication

Karen Inniss who, undaunted, assisted us inthe production of the guide. Her experiencein assisting in other publications, papersand in fund-holding, facilitated uniformityand progress during the preparation of theguide, turning chaos into order.


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Childrens Community NursingPromoting effective teamworking for childrenand 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

2C H I L D R E N S C O M M U N I T Y N U R S I N G

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This publication is a revised edition of a guide toplanning and developing community childrensnursing services. Its predecessor, published in 1994,was entitled Wise Decisions (RCN 1994). The guide isaimed primarily at those establishing orcommissioning services, or reviewing and developingexisting services. More detail on the history, policycontext, approaches to care and methods of workingof community childrens nurses can be found in Muirand Sidey (2000). A resource pack produced tosupport the Diana Princess of Wales communitychildrens nursing teams is also an invaluablereference (ENB & DoH 1999).

Community childrens nurses (CCNs) are registeredchildrens nurses with a community nursingqualification who have direct involvement with the childat home or in school, assisting parents to providetreatment and monitoring the childs progress. They area readily accessible source of support, information andadvice for families. The CCN often acts as key worker forchildren with complex needs, requesting input fromlocal paediatricians or general practitioners andsometimes directly from the tertiary specialist.Community childrens nursing has specialistpractitioner status (UKCC 1994).

As far back as 1949, a community childrens nursingservice was established in the UK, in Rotherham, in

response to concerns about cross infection in hospitaland associated infant mortality. The oldest continuousservice is the Paddington London Home Care Teamestablished in 1954, believed to be the longest runningCCN service in the world. There are now over 250 teamsestablished in the UK (RCN 2000).

Because of the lack of a national strategy, communitychildrens nursing services have been established on anad hoc basis to meet local needs. CCN services functiondifferently in different areas, depending on local needs,commitment, skills, resources and policies. Anopportunity to rationalise provision comes with theadvent of primary care groups and trusts (and theirequivalents in the other UK countries) which arecommissioning services for their locality. However,CCNs need to be actively involved in ensuring thatthese commissioners understand the benefits CCNservices can offer to children and their families.

This guide will help by sharing the lessons learnt todate, beginning with ways to identify service needs anddescribing the various models of service delivery whichhave been established to meet those needs. Practicalissues such as provision of equipment and recordkeeping are considered and the final section looks atappropriate ways to evaluate CCN services. Examplesused in the text are offered as illustrations rather thanas 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 byqualified 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

2Who needs theservice? Profilingand needsassessment

Community needs assessment and profiling are termsthat have been widely used in both health and socialcare domains (Tinson 1995). Understanding the healthcare needs of children and families and their need forparticular 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 servicedelivery adopted by the CCN team (see Section 3). If theteam is acute service based, it is likely that the areacovered will be the catchment area of the acutepaediatric service. Generally, this will be large anddiverse, often covering both rural and urban areas andincluding pockets of both deprivation and wealth. If theteam is based within the primary health care team or aprimary care trust, the practice population will be muchmore specific.

Ad hoc development of services has meant that theservice delivery model has usually been decided beforethe geographical area is defined. This may not be thebest way to define the community in the longer term asit can lead to some areas being without a service andothers having services with the potential to overlap. Ascommissioners review service provision, thegeographical area covered by a CCN team may bedefined in other ways.

Client caseload

The caseload will usually include children and youngpeople between 0-18 years with older clients in somespecially negotiated circumstances. It will be specific tochildren with health care needs and the CCN team willneed to determine the parameters of their service inrelation to the sort of referrals they will accept and thepresence of other services such as specialist or respitenursing 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 whichyou will practice. It will aid the identification of needand may be used to influence policy (Tinson 1995). Itconsiders aspects such as:

Demographic detail

Geographical location of different demographicgroups

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 inhelping to determine the potential caseload of the CCNteam. Important data items include:


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Paediatric inpatient stays: numbers, length of stay &reason for admission

Paediatric clinic attenders

Paediatric ward attenders: numbers & reason forattending

Caseload of community paediatricians

Existing nursing services in the defined community.

Patterns of referral to established CCN teams provideuseful background information for this exercise.Guidance documents produced by government,professional and voluntary organisations will also behelpful. One example is the report on childrenspalliative care services (ACT and RCPCH 1997) whichestimates that in a district with 50,000 children, 50 arelikely to have a life limiting condition with palliativecare needs.

During the profiling stage the information should begathered, sifted and recorded. If it is filed and accessibleit will become a well-used resource for all teammembers. If it is to influence policy (for example, tosupport the expansion of services), the profile must betaken a stage further and assessed and analysed toidentify 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 professionalperspective

Felt Need need identified by members ofthe community

Expressed Need felt need that has progressed toa demand for a service

Comparative Need identified by comparison withanother area (Hughes 1997)

Having compiled the profile with the relevant data forthe geographical community and the potential caseload,this data can be analysed using a framework such asPEST (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 musttherefore be balanced by the views of actual andpotential service users (felt need).

Questionnaires and semi-structured interviews couldbe 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 ofevidence including: PEST analysis; quantitative andqualitative data; and reference to current literature andprofessional and government publications. This willenable the CCN to present a balanced, evidence-linkedpicture of the needs of the client group within thebroader 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 modelsChildren attend hospital for a range of health care needs.These include common childhood problems, such aseczema, asthma, constipation and gastro-enteritis, andmore serious conditions requiring intensive or palliativecare.Advances in health care mean that more childrenare surviving diseases which were once fatal. But thesechildren have long- term nursing care needs forexample, gastrostomy support for feeding problems ortracheostomy and oxygen therapy for respiratoryproblems, or a combination of these.

In some areas these children will be in hospital for longperiods of time. Whilst a hospital can provide a safe andsecure environment it also has limitations:

Separation of the child from family, friends andother carers with potential lasting emotional andpsychological effects

Risk of infection to an already vulnerable child

Expense and stress for the family, with travelling toand from the hospital; buying extra food duringhospital stays; providing care for siblings at home;taking time off work

Medicalisation of the childs condition which couldotherwise be managed quite effectively at home

Disruption to normal family life (Atwell and Gow1985, While 1991).

Research has demonstrated that when a child is caredfor at home the family adjust more quickly to a long-term illness, that home care is a more effective use ofresources and care is individualised to the familylifestyle (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 tolocal need and circumstances, rather than based on themost effective model of provision. A variety of models ofcommunity childrens nursing services have emergedover the last decade and there is no single, perfectmodel (see figure 1). A service may have up to 15 nursesin the team or one or two nurses working in isolation.The advantages and limitations of the variety of modelsare well documented, however all studies note thebenefits and satisfaction for the family (While 1991,Jennings 1994, NHS Executive 1998).

Figure 1: Components of the various models for CCNservices (Neill and Muir 1997)


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Recommendation from the Health Select Committee:

We recommend that the Department of Health should monitor for effectiveness and cost-effectiveness the variouslocal models and structures which currently exist, so that improved advice and guidance can be given topurchasers 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

Communitytrust

Ambulatory paediatrics

Ambulatory paediatrics is not a speciality in itself but aphilosophy of care driven by the wish of both parentsand health service to minimise time spent in hospital byproviding specialist paediatric care outside hospital andshort stay facilities inside hospital (RCPCH 1997). Aswell as community childrens nursing, ambulatorypaediatrics may include day unit and acute assessmentfacilities, consultant outreach clinics and walk-inclinics. The future configuration and staffing of suchservices have been the subject of much debate, as healthplanners try to define the extent of need, and the bestway of meeting need in a modern health service (BPA1993, 1996).

There are now many established day units and acuteassessment facilities which have had a significant impacton quality of services to children. One example is thePaediatric Admission Unit (PAU) established at LeicesterRoyal Infirmary Childrens Hospital in 1994 (Carter1997, Carter et al 1997). This was aimed primarily atacute unbooked admissions and included follow upclinics staffed by senior paediatricians.A family doctorphone line was available one hour a day to answerqueries about paediatric cases in general practice.

Before the establishment of the PAU, children referredby the GP were admitted through A&E into a bedbooked for them on the childrens ward and were notseen by a doctor until they reached the ward. The PAUenabled a rapid one stop admission process includinginitial investigations and treatment. A higher proportionof 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 ofambulatory paediatrics by promoting a philosophy ofhome care rather than admission, treating andmonitoring children at home after discharge andproviding a Hospital at Home service. An example ofthe 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 generalpractitionersGeneral practitioners are experiencing a rising demandfor on-call services, particularly in urban areas. This hasmeant 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 awareof the need to avoid admitting children to hospitalwhere possible and some have actively supported theidea of a childrens nursing service to facilitate this. Theservice described in the example below receives half ofits referrals directly from general practitioners, mainlybecause of the strength of general practice in the area,with a high proportion of general practitionersproviding their own on-call service.

CCN team working with general practice

Stafford District General Hospital has 34 childrensinpatient beds. The community childrens nursing teamwas established in response to concern from two GPswho felt that they were admitting childrenunnecessarily. The team consists of five whole timeequivalent nurses who take 1,000 referrals per year,around 50% from GPs. A 7 day service is provided bythe team. There is an on-call service at night and thenurse on call usually retains the children referred toher as part of her caseload. Weekends are stressful, asa single nurse is usually on-call from 9 am on Fridayuntil 9 am Monday. Some referrals are queries whichcan be dealt with by phone; however at least one outof hours visit is normal most nights.

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The allocation of clinical responsibilities betweencommunity childrens nurse, general practitioner, andhospital or community paediatrician must be madeclear. It is not possible to set rigid policies because thearrangements will be a matter for negotiation anddependent on the needs of the individual child andfamily. There is also, inevitably, some overlap in the rolesof different professionals. It is essential that thecommunity childrens nurse has easy access to thesedoctors and is able to refer children directly to thepaediatric unit for admission if required. Goodcommunication 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 hasrationalised approaches to common childhoodproblems, and integrated the skills of variousprofessionals involved in the childs care.

For example, the development of a nurse-ledconstipation clinic (Muir 1998) can bring togethermany skills. Childhood constipation is a commonproblem. It can comprise a significant proportion of theCCN caseload and may account for up to 3% of general

paediatric referrals and up to 25% of referrals topaediatric gastroenterology centres (Sullivan 1996).Despite the high incidence, this condition is oftenpoorly understood, frequently inappropriately managedand has a poor response to treatment.

In many areas, particularly where no CCN service exists,children are regularly admitted to hospital for up to twoweeks for this recurring problem. Studies indicate atreatment failure rate of 40%, with over half of patientsare still significantly constipated 12 months after havingstarted hospital treatment (Sullivan 1996).

Figure 2: Potential range of carers for one child

The potential range of people involved in the childsmanagement can make care difficult to co-ordinate (seeFigure 2). The development of an interdisciplinaryservice co-ordinated by the CCN can lead to:

Skill-sharing between professionals in both hospitaland community settings

Improved efficiency of management.

An important priority is to establish a consistentprotocol of management that may be implementedwithin and across trusts. Clinics staffed by CCNs maytake place either in hospital or community settings andshould have clearly defined, client-centred aims andobjectives (see example in box).


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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 theaims and objectives are being achieved. The limitedresearch available in other areas suggests that thisprovision is both effective and satisfying to theconsumer (Hill 1997). This kind of provision could beimplemented in other areas such as asthma, eczema andepilepsy management. If the nurse could prescribemedicines within the clinic, practice would be moreefficient but Government direction is still required onthis issue.

The nurse-led clinic aims to promote child and family

empowerment as far as possible by providing:

Opportunities for families to network to reducefeelings of isolation

Consistent health promotion and education

Ongoing liaison and support with members of theprimary care team

Continuity of care

Minimal disruption to the child through taking timeoff school

Minimal disruption to the parents through takingtime 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 andinformal working relationships. Informal networkinghelps to develop a community of mutual interest,understanding and respect. This is especially importantfor a new community childrens nursing team whoserole may be seen to threaten established services suchas health visiting or district nursing. A commitment tomeeting other practitioners at an early stage in servicedevelopment is rapidly repaid.

Networks may give access to information and resourcesnot available through other channels, whether it is thehospital ward prepared to lend a suction machine, or thehealth visitor sharing her knowledge of local resources.However, networks cannot guarantee the quality ofservices provided to children and families. Suchassurance requires more formal working relationships.

The first essential step for the new CCN team is to maketheir own role explicit by publicising their aims,objectives, intended client group, and referral details.Where the team offers a service focused on a particularsection of the child population, it may be helpful towork with agencies to produce referral guidelines. Theseare especially important if the team is receivinginappropriate referrals, or when there is a need to raiseawareness of a service.

Key worker roleFamilies ask for a key worker who visits regularly, whois approachable and accessible and who will listen. Inmany districts it is only the CCN who fulfils all theseroles 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, morean ideal than a reality for most families. Informally,many CCNs will continue to offer many of the essentialaspects of a key worker role though at times this maylead 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 childshealth, and should provide schools with informationrelating to their childs medical condition. In some areasspecialist school nurse roles have been created toprovide hands-on-care and meet the nursing needs ofchildren in schools. However, many CCNs also have animportant role in supporting a child withmedical/nursing needs in school. A large percentage ofthe CCN teams caseload will be children of school age.Liaison with school nurses needs to be as good as thatwith health visitor colleagues. Part of the role of the

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CCN may be to visit children in school or to educateteachers/carers/other pupils in the needs of a child withmedical/nursing needs.

The Department of Health, and the Department forEducation and Employment have produced guidance forschools supporting pupils with medical needs. Circular14/96 (DfEE 1996a) summarises the legal frameworkthat affects schools responsibilities for managing apupils medical needs. It recommends that schoolsdevelop policies and procedures, and suggests healthcare plans, which include medication arrangements, areprovided for pupils with medical needs. A Good PracticeGuide (DfEE 1996b) has been produced to help schoolsto put these recommendations in place, highlighting twoimportant issues:

1. There is no legal duty which requires school staffto administer medication. Staff who providesupport for pupils with medical needs do sovoluntarily and must be provided with supportfrom the head teacher, and the childs parents,with access to information and training(paragraph 11).

2. School staff may require specific information ortraining, and should not undertake suchactivities without training from healthprofessionals (paragraph 80).

In many cases, the training will be provided by theschool nurse but there are instances when the CCNshould provide education and training, for example,when a child with a less common problem requiressupport, such as a child with a gastrostomy.

Children with life-threateningor terminal conditions

Children with life-threatening conditions form a diversegroup, encompassing children dying from neuro-degenerative disorders or congenital anomalies ormalignancies, as well as those growing up knowing theirlife span is limited by slowly progressive conditions suchas cystic fibrosis or muscular dystrophy. TheDepartment of Health has invested in the developmentor expansion of services to meet their unique needs anda specific resource pack has been produced (ENB andDoH 1999).

These children and their families require care which is

holistic, acknowledging the emotional and socialburdens of caring placed on the parents. From theearliest stages of diagnosis, a balance must be keptbetween the need to prepare for bereavement, to controlsymptoms and optimise quality of life and the desire topreserve life (Goldman 1994). In practice, many familiesexperience fragmentation of services, reporting barriersto obtaining clear information, practical help, emotionalsupport, 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 ofchildren with life-threatening or terminal conditions and their

families (ACT 1993).

A working party of the Association for the Care ofChildren with Life-Threatening or Terminal Conditions(ACT) and the Royal College of Paediatrics and ChildHealth (RCPCH) (1997) proposed that each districtshould establish a multidisciplinary paediatric palliativecare network capable of co-ordinating the health andsocial care required. This might involve paediatricians,childrens nurses, therapists, child mental healthprofessionals, other relevant professionals, spiritualleaders and support groups.

A core group drawn from this network would provide akey worker to each family and liaise with regionalcentres and primary health care teams (Wallace andJackson 1995). Throughout the childs illness, respitecare should be available to families, on a flexible basis,whether for a break of a few hours or for a longerperiod. Respite care may be offered in the childs homeor at a childrens hospice or suitably staffed childrensrespite unit. Twenty-four hour nursing care should beavailable to children during the terminal phase of theirillness (ACT and RCPCH 1997).

Non-parent carers

In some areas, unqualified carers support home care ofchildren with complex needs (NHS Executive 1998,Rhodes et al 1998). The CCN is required to teach


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parents, the family and other carers how to deliver safeand effective care. Ongoing support and regularupdating in delivering this care is essential for all carers.

With no national guidance, health authorities havedeveloped local guidance which has led to variations intraining and therefore in provision (Townsley andRobinson 1997). Networking between CCNs in otherareas will lead to the development of consistent,national protocols for training, such as that cited by theDepartment of Health in its review of pilot work forchildren with life threatening illnesses (NHS Executive1998), and definition of acceptable levels ofcompetence.

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Resourcemanagement

Human resources

The most valuable resource in the CCN team is the staffand their skills. Those leading and providing the serviceneed to be educated in both childrens and communitynursing. This has been recognised by the UKCC with thedevelopment of a unique community childrens nursingcourse (UKCC 1994). The amount of clinical experiencerequired to take up post as a CCN will depend on theskillmix of the team and the availability of supervisionfor less experienced staff. All team members needregular updates to maintain their expertise and theyshould receive support through regular clinicalsupervision, especially if practising alone (DoH 1996,ACT & RCPCH 1997).

Efficient and effective use of human and other resourcesrequires:

Good team working

Effective clinical and professional leadership

Clinical supervision

A suitable base

Access to a reliable source of consumables andequipment

Ongoing estimation and prediction of dependency/workload planning

Good record keeping and information management.

Skillmix, caseloads and organisation of the team willdepend on the client profile, the number of nurses in theteam and the type of service being funded. There areadvantages and disadvantages in individual teammembers specialising solely in particular care groupssuch as asthma or cancer and these should be carefullyconsidered in the context of the total service.

Play specialists

When considering the make-up of the communitychildrens team, other specialists may be appropriate to

include. In 1993, Stoke Mandeville Hospital took theinitiative to expand the hospital play service into thecommunity by creating a full-time community playspecialist position. The post was based within thecommunity childrens nursing team with accountabilityto the team manager. Community play standards weredeveloped alongside specific documentation designedto enable ongoing evaluation of the service.

Referrals covering a range of situations such aspreparation for hospital, phobic children and distractiontherapy, come from paediatric consultants, healthvisitors, CCNs and the childrens wards. Individual playprogrammes are designed in conjunction with eachfamily and sibling and parent involvement in the playcare is always encouraged. A number of sibling supportgroups have also been formed: one for siblings of sickchildren with life-threatening conditions and anotheroffering bereavement support for children following thedeath of their brother or sister. Scrapbooks and memoryboxes are introduced to help the sibling work throughtheir experience of bereavement. The use of play offersan holistic approach to care in the community, meetingnot only the needs of the sick child but also of siblingsand 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 fundingfor CCN teams could be found through saving in otherservices, such as a reduction in inpatient services oncethe team is established. Unless acute and community


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services are combined in a single trust, funding teamsin this way can be difficult. Other sources of funding toestablish teams have been charities or voluntary bodiesand specialist services such as oncology. Given theresponsibilities and expertise of the majority of thesenurses, they can expect to be paid on at least equivalentterms to health visitors.

Team working

A team is defined by its common purpose. Every teamneeds a shared vision, giving a sense of cohesion anduniqueness that binds individuals together. Team valuesneed to reconcile the values of individual teammembers, the priorities of the organisation, and theneeds of the client group. Added to the profile of theclient group, the location of care and the analysis ofneeds, the team needs to agree on their answers to somesimple questions:

Who are we? What are our unique qualities,qualifications, interests and enthusiasms?

What do we do? What exactly are we offering andhow does our role differ from that of othercommunity nurses?

How do we do it? Consider the technical,interpersonal, and educational skills, and ourcommitment to multi-disciplinary and multi-agency working.

The answers contribute to a team philosophy and can beused to communicate the teams public face. They alsocontribute to the policies, protocols, and audit measuresnecessary for collaboration, marketing and ensuringquality.

During the first months in the life of a new team, there isoften a strong sense of common purpose which sustainsthe drive and enthusiasm of its members.As time goesby, and work pressures increase, tensions anddisagreements will arise.A failure to invest in teambuilding and address communication problems can leadto escalating ill feeling and a breakdown in co-operation.

Basic organisational measures can facilitate teamcollaboration:

Regular team meetings

Monitoring individual workload

Allocating and sharing workload.

Leadership

Relatively few community childrens nursing teams arelarge enough to sustain a full-time team leader.Commonly, teams are managed as part of a paediatrichospital unit or community nursing service. As NHSmanagement structures become leaner there is a riskthat line management responsibility becomes more andmore distant from day to day team function. Themanager may not have the time or the specialistknowledge 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 communitychildrens nursing team may agree to share and rotateco-ordination responsibilities. One example is the teamchairperson who ensures team meetings take place,keeps meetings productive, involves all team members,and checks progress with delegated tasks. All teammembers need to accept the importance of co-ordinating their efforts.

Clinical supervision

Individual team members must be encouraged topursue personal and professional growth anddevelopment in line with the UKCCs recommendationson Post Registration Education and Practice (UKCC1994).

Whilst the working day of the Community ChildrensNurse (CCN) is primarily concerned with care delivery,an essential aspect of the work should be to both offerand accept support and supervision from colleagues.Staff morale determines the efficacy of the servicedelivered to clients thus it is cost effective to resourcesupport initiatives such as clinical supervision.

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The overall goal of clinical supervision is to sustain anddevelop clinical practice by offering the formalopportunity to discuss work informally with acolleague. 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 clinicalsupervision so detail is not provided here but it isessential that it is introduced by local agreement, not asa 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 provideadequate office space, safe storage of equipment andgood communication systems, including telephoneanswering machine and mobile phone or radio pager.The personal safety of team members should beaddressed with reference to professional guidelines andlocal policy (RCN 1998a).

Increasingly, trusts require computer records ofcontacts, episodes and other information. Data needs to

be carefully tailored to meet the demands of the teamand trust. Data entry is time consuming and clericalhelp is invaluable in keeping records updated. Adequatesecretarial 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 HealthSelect Committee (House of Commons 1997)recommended that the Government should issueguidance regarding the local need and availability ofequipment, improved equipment management andproviding a service that is easily identified by familiesand professionals. Issues concerning resources,consumables and equipment need to be adequatelyresearched to meet the needs of the community profile.

At present, each health authority may identify fundingfor equipment in different ways. For example, inSouthampton, a sum of money is top-sliced from eachGPs budget and given directly to the CCN service. Theoverall advantage of this approach is that the team isable to monitor their supplies very closely to ensureequipment is child specific and correctly serviced andmaintained. However, current funding arrangements areset to change with the emergence of primary caregroups/trusts when local agreements will need to benegotiated.

Prescribable supplies and drugs

Although the doctor with clinical responsibility for thepatient should be the one who prescribes (NHSExecutive 1991), this situation may change with thedevelopment of nurse prescribing. At discharge, thepaediatric unit should provide enough drugs andsupplies to last the child one week, until they can obtainmore from the GP. GPs are able to prescribe for allpatients who are at home unless:

i. The drugs are part of a hospital-based clinical trial

ii The response to treatment must be closely monitoredby the hospital or

iii Where the drugs or suppliers are only availablethrough hospitals (NHS Executive 1995).

Prescribable supplies are listed in the British NationalFormulary and Drug Tariff.


13

Nurse prescribing

The Crown report (1999) on the review of prescribing,supply and administration of medicines recommendedthat prescribing powers be extended to otherprofessional groups with appropriate regulation andtraining with the aim of improving continuity andpatient choice. The implications of these proposedchanges for CCNs and other professionals are currentlybeing considered.

Medical equipment and non-prescribable supplies

As part of the discharge planning process, the childsneed for medical equipment and non-prescribablesupplies should be assessed and the source of suppliesidentified. High cost care should be negotiated throughthe health authority, for continuing care funding seesection 5.2.

Re-use of Equipment

The Health Select Committee recommended that theMedical Devices Agency should introduce a requirementthat the labelling of devices should clearly indicatewhether they are licensed for:

Single use only

Single patient use (with the maximum number oftimes specified)

Multiple use by more than one person (with themaximum number of times specified).

Labelling should also indicate proper procedures forcleaning the devices and other information about itsuse. Such guidance should be supplemented andendorsed as part of the local infection control policyand a full risk analysis documented.

Dependency and workload

Patient dependency is defined as an assessment of apatients ability to care for themselves and nursedependency as ...embracing the patients total need fornursing care including education, rehabilitation andpsychological care (RCN 1995). Nursing workload is anestimate of the nurse hours required to provide therequired 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 dependencyscores can provide concrete information about the workof the CCN team. Scores can be used to assist inplanning daily/weekly workloads, retrospectively asevidence for expanding a team, or as a guide tomanagers as part of an annual review. To worksuccessfully a dependency scoring system mustencompass physical, psychological, spiritual and socialdimensions. These however, will be influenced by thephilosophy, geography, skill mix, culture and workingsystem of the team. The following diagram may providesome triggers to those developing their own workloadcalculation tool:

Figure 3: Considerations when calculating workload(adapted from RCN 1995)

A dependency tool that accurately reflects the work ofCCNs has not yet been developed. There are tools fordistrict nursing, and these may be transferable to CCNs.The adaptation or development of a dependency toolspecifically for community childrens nursing wouldprovide a much-needed national standard.

Where the team cannot offer 24 hour, 7 days-a-weekcover, it must specify the ways in which continuity ofcare will be assured. For some children this may entail a

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Patient dependency

Nursing dependency

Childs conditionand family needs

Interventions:- hands-on care- support- teaching

Co-ordinatingequipment/supplies

Travel time

Teaching andsupport ofcolleaguesand studentsR&D / audit

activities

Clinical

supervision

Reporting& recordkeeping

Multi-disciplinary/multi-agencycommunication

return to hospital, for others care may be shared withadult district nursing services. Hand-over and teachingmay be required for district nurses with little recentexperience with children, and team workloadcalculations need to take this into account. The teamshould specify and monitor situations in which it isacceptable for a CCN to work outside their contractedhours.

Besides the teams workload, staffing levels must be setto include cover for sickness, holiday and study leave.Non-clinical time for such activities as professionaldevelopment, supervision of students, administrativetasks and team meetings should be added into theworkload calculations.

Each team needs a system for monitoring the pressureof work on each nurse, including:

Numbers of highly dependent or vulnerable families

Amount of child protection work

Numbers of children with life threatening or lifelimiting conditions

Non-clinical aspects of work

Amount of time worked outside contracted hours

Caseload turnover.

Stress and fatigue have a negative effect on motivationand may lead eventually to burnout. If the teamidentifies excessive work pressure building up, it musttake action. This may include shared care, re-distribution of workload, limiting referrals and, for thelong-term, bids for more resources.

Information management and record keeping

Different approaches to record keeping are useddepending on policies within the CCN teams area ofwork. Some use care-plans from the childrens wardsand continue with these in the community, others havedevised their own system and others use genericcommunity records. In some areas, the record has beenadapted so that it can be included in the child healthrecord book which parents hold for under fives. Thesechild health records are also being developed further forthe older child. Shared records such as this arebecoming more widespread as they support continuityand collaborative care delivery.

Whatever format is used, the records should reflect theneeds and progress of the child and must take accountof professional guidelines (UKCC 1998, NHS Executive1999). 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, unlessthis is felt to be unacceptable or unsafe. There is strongevidence to suggest that records kept in the home arerarely lost or destroyed. However, if they are lost, theconsequences are potentially devastating, so a furtherrecord of CCN visits and an outline of care should bekept at the office base. These notes should include anypertinent changes and also a record of telephone triagepertaining to the family. This is necessary to:

Provide a secondary source of evidence if necessary

Inform colleagues of care required should theprimary nurse be unavailable

Provide information for managing the service.

Once the care is completed (i.e. if the childs problemsare resolved or the child dies) the full record needs to beretained and kept for a minimum of 25 years, as it maybe required for audit and for legal purposes, forinvestigation of complaints and issues of childprotection.

Increasingly, nurses are required to demonstratepositive outcomes as a result of their interventions. Thecomplete record is evidence of what was done for thechild and family, why, and with what result. Besidesgood outcomes, the record can be used to demonstrategaps in service for example, an unnecessary stay inhospital or hospital/GP attendance because of theabsence of the particular skills or support provided bythe CCN team.

Over the years CCN teams across the UK have developedrecords and information sheets/resources which theyhave tried and tested (see table). Most teams are happyto provide examples of their stationery for new teams tomodify for their own use. Pharmaceutical companiesproduce information for parents for example, for


15

children with diabetes or those on growth hormone. Butif you wish to use pharmaceutical companyinformation, you must check with your employer thatthis is permitted.

EXAMPLES OF RECORD AND INFORMATIONSHEETS/RESOURCES:

Referral form

Notes front sheet/initial assessment

Nursing care plan

Record sheet fitting the National Parent Held ChildHealth Record

Discharge to home care: checklist to be kept inhospital notes

Information for hospital and community staff aboutthe CCN team

Liaison letters for GP, health visitor and schoolnurse

General information for parents about the CCNteam

Information for parents (e.g. care after day surgeryand 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 forparents.

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The transitionto home careThe poor quality of hospital discharge planning is auniversal complaint of families and communitychildrens nursing teams. When children have complexneeds it is often necessary to adopt hospital in-reachwhere the CCN takes an active role in initiating thedischarge planning process. Often CCNs need todemonstrate to their hospital colleagues that they arethe experts when it comes to the comprehensive andeffective planning of home care. This area has beenhighlighted in recent research (Procter et al 1998).

Discharge planning

Discharge to home care should always be considered as analternative to hospital care.Any child discharged withmedical equipment should be referred to the CCN team sothat continued advice and support can be offered. Parentsare often required to assume 24 hour responsibility fortheir childs care (NHS Executive 1998). They may need tolearn complex nursing skills, such as tracheostomy care,oxygen therapy and administering intravenousmedications. For children with complex needs thesituation is further confused by the number of differenthealth, social and education professionals involved.

Principles for planning effective transition from hospitalto home care include:

Each child should have a named nurse, or keyworker, with responsibility for co-ordinatingdischarge, beginning on admission andcommunicating with all professionals involved

Patient and carers are prepared so that they feelconfident and are competent to take on agreed rolesand care following discharge

The level of support and supervision required isassessed before discharge to estimate dependency.

Key considerations when planning discharge of childrenwho require ongoing nursing care or support:

Care planning in relation to the childs age, abilityand condition

Appropriate resources for the family and homecircumstances: respite care, equipment etc(including maintaining safety and servicing ofequipment)

Education and support needs of the family andother carers

Funding and financial issues

Responsibility for medical supervision.

It is important that all communications are clear, legibleand complete.Verbal instructions should be confirmedin writing. When a child is referred to the CCN team,details of nursing care required and referral should beincluded in the discharge letter to the GP.

Continuing care: eligibility criteria

Continuing care was identified as one of the six nationalpriorities for the NHS (NHS Executive (1995).A primaryfocus of the policy is to develop consistentarrangements, to clarify and fund NHS nursing care andto distinguish this from social care. To disentangle healthand social care, health authorities were required todevelop and publish local eligibility criteria and developappropriate services to meet the needs identified.However, these have generally failed to acknowledge thecontinuing care needs of children.An example ofeligibility criteria for children requiring continuinghome care is available in NHS Executive (1998).

Should the child be eligible for continuing health care, aspecific assessment will take place before they aredischarged from hospital. The NHS will then fund careeither wholly or partly. Criteria for enhanced health carefunding can be obtained from the local health authorityin each area. These should be specific to each child. TheCCN can play a pivotal role as advocate for the child andfamily in this process.

Funding issues and disputes should be avoided at allcosts through the development of agreed, child-specific guidelines, so that adequate care is continued.This is especially pertinent for those children withsevere learning disabilities, currently in specialschools, who may be included into mainstreamschools. The RCN is presently developing guidancespecifically related to the continuing health care needsof children and young people.


17

5

Maintaining aquality service

Clinical governance

Professional accountability requires all nurses todemonstrate that they have delivered a high qualityservice.The Governments clinical governance agendaplaces a duty on all health care professionals to ensure thatcare is satisfactory, consistent and responsive (Departmentof Health 1998).Since April 1999, primary care groups andtrusts have had to guarantee quality of care through theprocesses of clinical governance (see RCN 1998b forfurther 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 onthese processes and it must provide evidence of qualitycare in the form of annual reports. In developing aquality agenda you need first to identify the dimensionsof quality in healthcare and then how you will measureor monitor quality to identify whether improvementsare necessary. Maxwell (1984) suggests that qualityhealth care should incorporate consideration of:

Equity

Accessibility

Acceptability

Efficiency

Effectiveness

Appropriateness.

In each of the areas mentioned, standards orbenchmarks are needed to monitor quality. Localstandards, relevant to the type of service and based onthe teams objectives, can be developed by the team inconjunction with users and managers (Johns 1992).Benchmarks require a collaborative effort betweenteams so that each can measure quality improvementagainst the performance of others, or an idealperformance (Ellis 2000).

Users views

The moves to ensure customer satisfaction within healthcare have led to the development of charter standards,satisfaction surveys and other ways of obtaining userfeedback on services. One such method is the use of storytelling (narrative) (Adair 1994) which acknowledges theprinciple that quality is what the customer says it is(Melum and Sinioris 1992). Satisfaction surveys havelimitations but there are some good examples ofquestionnaires developed for children of different ages togive their views on different kinds of services (e.g.Appendix 1 provides an example of a survey tool. Hogg1997). Children and their families, as primary users ofCCN services, can provide a view on each of the areasabove, but they will not be able to provide an evaluationof 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 toothers. An annual review provides the ideal opportunityto reflect on the service to enable planning for thefollowing year. The report also provides a usefulmeasure of the work carried out over the previous year.

Having produced annual reports on the service Iwould have to say that whilst they are timeconsuming they are invaluable for referencepurposes and they can be used as a measure of ourprogress. It can also be very rewarding to comparereports and realise the developments the team ismaking.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


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 vitalcomponent in the provision of a seamless health careservice for sick children. The content of this guidereflects the tasks and issues to be faced by thoseundertaking the challenge of establishing new servicesor reviewing and developing existing ones. In a healthservice continually subject to funding constraints, thoseinvolved in service delivery and management need to beable to comprehensively describe and justify services.Establishing a strong case for community childrensnursing requires assessment of need and the ability touse results to set objectives. Monitoring and reportingon the achievement of objectives can ensure the firmestablishment and continuity of services.

The determination and persistence of individualpractitioners and families are among the mostimportant factors in establishing and maintaining homecare. Service delivery is expanding but continued effortsare required as we aim towards a comprehensivechildrens nursing service for every sick child whorequires care at home and in other community settings.


19

7

References

ACT (1993) (Association for the care of children with life-threatening or terminal conditions and their families). TheACT charter for children with life-threatening conditionsand their families. Bristol ACT/Institute of Child Health

ACT & RCPCH 1997 A Guide to the Development of ChildrensPalliative Care services. London, Association for Childrenwith Life threatening or Terminal Conditions (ACT) andthe Royal College of Paediatrics and Child Health(RCPCH).

Adair E (1994) The Patients Agenda. Nursing Standard.9, 9, 20-23

Anderson JM (1990) Home care management in chronicillness and the self-care movement: An analysis ofideologies and economic processes influencing policydecisions. Advances in Nursing Science. 12, 71-83

Atwell JD and Gow MA (1985) Paediatric trained districtnurse in the community: Expensive luxury or economicnecessity? British Medical Journal. 291, 227-229

Audit Commission (1993) Children First: A Study of HospitalServices. London, HMSO

Audit Commission (1996) Audit Commission, Goods for yourHealth. London, HMSO

Billings J and Cowley S (1995) Approaches to communityneeds assessment: a literature review. Journal of AdvancedNursing, 22, 721-730

BPA (British Paediatric Association) (1993) Flexible optionsfor paediatric care: a discussion document. London, BPA .

BPA (British Paediatric Association) (1996) FutureConfiguration of Paediatric Services. London, BPA (nowRCPCH).

Bradshaw J (1972) The concept of social need. New Society.30, 640-643

Buchan H and Grey JA (1990) Needs assessment madesimple. Health Service Journal. 100, 240-241

Carter E (1997) Ambulatory paediatrics: Commentary.Archives of Disease in Childhood 76, 473.

Carter E et al. (1997) Hospital admissions: reducing in-patientpaediatric admissions. Family Medicine. 1, 7-8.

Crown J (1999) Review of Prescribing, Supply andAdministration of Medicines. London, DoH.

Department for Education and Employment (DfEE) (1996a)Supporting Pupils with Medical Needs In School, Circular14/9

Department for Education and Employment (DfEE) (1996b)Supporting Pupils with Medical Needs A Good PracticeGuide

Department of Health (1996) Child Health in the Community:A Guide to Good Practice. London, The Stationery Office.

Department of Health (1998) The New NHS: ModernDependable. London, The Stationary Office orhttp://www.open.gov.uk/doh/newnhs.htm

ENB and DoH (English National Board and Department ofHealth) (1999) Sharing the Care: a Resource pack tosupport Diana, Princess of Wales community childrensnursing teams. London, English National Board.

Ellis J (2000) Sharing the evidence: clinical practicebenchmarking to improve continuously the quality of care.Journal of Advanced Nursing. 32,1,215-225

Goldman A (1994) Care of the dying child. Oxford UniversityPress

Hallam L (1997) Out of hours primary care. (Editorial). BMJ314, 157-158.

Hogg C (1997) Emergency Health Services for Children andYoung People. London, Action for Sick Children

House of Commons Select Committee (1997) Health Servicesfor Children and Young People in the Community: Homeand School. Third Report. London, The Stationary Office

Hughes J (1997) Reflections on a community childrensnursing service. Paediatric Nursing. 9, 4, 21-23

Jennings P (1994) Learning through experience: anevaluation of hospital at home Journal of AdvancedNursing 19, 905-911

Jessop L et al (1997) Changing the pattern out of hours: asurvey of general practice cooperatives. BMJ 314, 199-200

Johns C. (1992) Developing Clinical Standards. In Vaughanand Robinson (eds.) Knowledge for Nursing Practice.Oxford, Butterworth Heinemann

Maxwell R J (1984) Quality assessment in health. BritishMedical Journal 288, 5, 1470-1472

Melum M, Sinioris M (1992) Total Quality Management: TheHealth Care pioneer. Chicago, American Hospital Pub.

Muir J (1998) The development of a nurse led childrensconstipation clinic. Paper presented at the British Societyof Paediatric Gastroenterology and Nutrition WinterConference, Peterborough.

Muir J and Sidey A (2000) Textbook of Community ChildrensNursing. London, Balliere Tindall.

NHS Executive (1995) Priorities and Planning Guidance forthe NHS 1996-97. London, NHS.

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NHS Executive (1998) Evaluation of the Pilot ProjectProgramme for Children with Life Threatening Illnesses.London, The Stationary Office.

NHS Executive (1999) For the Record: managing records inNHS Trusts and Health Authorities. HSC 1999/053.

NHS Executive Letter (1991) Responsibility for prescribingbetween Hospitals and GPs. EL (91) 127.

NHS Executive Letter (1995) Purchasing High-tech health carefor patients at home EL (95) 5.

Neill S and Muir J (1997) Educating the new CommunityChildrens Nurses: challenges and opportunities? NurseEducation Today. 17, 7-15

Procter S et al (1998) Preparation for the Developing Role ofthe Community Childrens Nurse. London, English NationalBoard.

RCN (1994) Wise Decisions: Developing Paediatric Home CareTeams. London, RCN.

RCN (1995) Dependency Scoring Systems. Publication code:000 566

RCN (1998a) Dealing with Violence against Nursing Staff.London, RCN.

RCN (1998b) Evidence for Nurses on Clinical Governance.London, RCN.

RCN (2000) Directory of Community Childrens NursingTeams (unpublished).

RCPCH (Royal College of Paediatrics and Child Health)(1997) Position Statement: Ambulatory Paediatrics.

Rhodes A et al (1998) Promoting Partnership: SupportingDisabled Children who need Invasive Clinical Procedures: AGuide for Barnardos Family Support Services. London,Barnardos.

Sullivan P (1996) Paediatricians approach to constipation.Current Paediatrics. 6, 97-100

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Townsley R and Robinson C (1997) Effective support servicesto disabled children who are tube fed. Interim Report to theNHS Executive. Bristol, Norah Fry Research Centre.

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Appendix 1

An example of a Patient/Carer SatisfactionQuestionnaire (from the Royal Berkshire andBattle Hospitals NHS Trust)

In an effort to maintain the quality of our service wewould be grateful of you would complete the followingquestionnaire. The information you give will be treated inthe strictest confidence and only used for the purpose forwhich 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 beenvisiting you? i.e days/weeks/months

4 Why is /was the nurse visiting?

5 Has the number of visits been appropriate to yourneeds? 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 communitychildrens nurse prior to her visit?

8 Have you had adequate written and verbal adviceabout your/your childs care needs? Yes? No?

9 Has the nurse offered support appropriate toyour/your childs needs? Yes? No?

10 Have you felt able to discuss your/your childs care? Yes? No?

Please comment

11 Have you experienced any problems contacting thenurse or with the service the team provides?

Yes? No? Please comment

12 Are there any changes to the service which would behelpful to you / your child? Yes? No? Please comment

Please add any further comments you may wish tomake:

Thank you for your help.

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Appendix 2:Contributors

Sue Burr RSCN. RGN. RHV. RNT. MA. OBE. FRCN.Advisor in Paediatric Nursing, Royal College ofNursing

Sue Facey RGN. RSCN. DN. Dip.N. (London) BSc (Hons)Community Childrens Nurse/Team Leader, Swindonand 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) PGCEACommunity Nursing.Lecturer/Practitioner, Community ChildrensNursing, 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 SickChildrens Trust

Helen Shipton Community Play Specialist, Community ChildrensNursing Team, Stoke Mandeville Hospital,Buckinghamshire

Anna Sidey RSCN. RGN. DNCert.Lecturer/Practitioner, Community ChildrensNursing. Nene University College. Northampton &Independent Healthcare Consultant

Maybelle Tatman MBBS. MSc. MRCP. FRCPCH.Consultant Community Paediatrician, Coventry


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Reprinted January 2003

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Documents

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