integrated care pathway for children and young people with complex physical healthcare ...€¦ ·...

Integrated Care Pathway for

Children and Young People with Complex Physical

Healthcare Needs

1

Introduction 2

Strand 1: Transition from Acute Hospital to 9 Community Services

Strand 2: Community Support Services 17

Strand 3: Managing transitions to Adult Service 45

Strand 4: End of Life Needs 51

Contents

Overview

This pathway guides community services in meeting the needs offamilies, children and young people, aged up to 18 years, who havecomplex physical healthcare needs. This is defined as:Children (and young people) with complex physical healthcare needsare those who require a range of additional support services beyondthe type and amount required by children generally and thoseusually provided to children with impairments and long-termillnesses.

The vision guiding services is:

Children and young people in Northern Ireland who have complexphysical healthcare needs will receive co-ordinated, high-quality,child and family-centred services which are based on assessedneeds, manage well the risks to life, promote the child and parents’health and well-being, encourage the social inclusion of childrenand families, and, where possible, enable them and their families tolive ordinary lives.

Introduction

2

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The Pathway has four strands.

Strand U represents the universal community services that will havebeen involved to some extent in the care of the child either prior toadmission to hospital or to whom the child is referred on discharge.However it is the interfaces between these services and thespecialist provision described in Strands 1 to 3 that are covered bythe ICP. A service framework covering Children’s Health and SocialWellbeing is in preparation by the DHSSPS. This will define the detailof this Universal strand. Links with the universal primary careservices are contained in Strands 1 to 3 of the Pathway.

Entering the Pathway

It is presumed that the child and family will enter the Integrated CarePathway from the acute hospital, although this may not always beso. The child’s stay in hospital could be of varying lengths of timeand may result from a condition that is present from birth or theresult of a trauma in later life.

It is possible that the child may be transferred from a Regional Unitto an Area Hospital. The inter-hospital transfer arrangements are notdealt with in this plan. However re-admissions to acute hospitals arecovered under Strand 2.

Strand 1: The first strand of the ICP covers the transfer tocommunity services. This is a crucial phase in the life of the chidand family and handled successfully will contribute greatly to thefamily’s confidence and their trust in services.

Strand 2: Describes the community services available to the childand family. These would usually cover the chronological age rangefrom birth to the child’s 18th birthday. This strand entails a range ofprovision although not every child and family will need or want allthe possible services.

Strand 3: Outlines the transfer arrangements to Adult services. Thisaspect is the more poorly developed at present; partly because ofthe relatively few children who have required this strand of the carepathway to date but the numbers will rise in the future as their lifeexpectancy increases. An equivalent Care Pathway for Adult personswould greatly assist the transfer process but this is unavailable atpresent. HSC Trusts could commence work on such a Pathway basedon the model proposed here.

Strand 4: Much of this content of this strand has been taken fromthe Care Pathway produced by ACT (The Association for Children’sPalliative Care: 2004) that covers End of Life and Bereavement. Thisstrand of the pathway could be entered from any of the previousthree strands and staff need to be prepared for it.

Introduction

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NB The strands are related to one another as the arrows indicate.Actions listed under one strand may have to be commenced underan earlier strand. However for clarity they have been grouped underthe strand in which the desired outcomes are listed.

Within the Pathway, a key standard is defined for each Strand andthe key outcomes expected. The main actions to be taken bycommunity services are then detailed and a suggested agency orperson is assigned responsibility for its implementation. Theseactions reflect current best practice or actions which arecommended in recent reports and research studies. They alsoembody parental wishes and aspirations. Consideration needs to begiven as to how the view of the children and young people areobtained throughout the ICP. The use of Independent Advocacy is apossible option.

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Strand U: Universal Primary Care Services• GPs • Health Visiting • Schools • Leisure

Strand 4: End of Life Needs• Planning • End of Life Support • Death • Post death

Strand 1Transition from Acute

Hospital to Community

Transfer Plan

Transfer co-ordinator

Lead Community Nurse

Common assessment of needs by multi professional team

Provision of equipment and resources

Strand 2Community Services

Co-ordination arrangementsand funding

Nursing services

Liaison with Hospital andPrimary care services

Readmissions to hospital

Therapy services

Housing adaptations and equipment

Access to education

Short break provision

Managing risks

Strand 3Transition to

Adult Services

Acute Hospital transfers

Named contact adult services

Transition Plans

Information on adult services

Continuity of service provision

Ring-fenced funding

Short break provision

Introduction

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Recording Actions

The tables of actions within each strand are used to record theservices provided to the child and family under each action. Also anydeviations from the proposed action should also be noted, such asomissions or improvements that occurred. The reasons for thedeviation should be noted.

These records are a crucial tool in sharing information with familiesand across professionals as well as providing a means of furtherdeveloping the ICP. In time, it would be possible to specify moreexplicit criteria regarding service responses, e.g. time limits within aresponse is made. The Pathway records could then be used forauditing purposes.

In the future, it is hoped to provide the Pathway electronically eitherfor down-loading from an Internet site or as a CD-Rom. This wouldalso assist with updating the content of the ICP or adapting it forlocalities.

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Name of child/family:

THIS IS THE PATHWAY FOR:

Date of birth:

Date Pathway started:

Date of latest update:NB. The Regional Assessment Tool to identify Children & Young People with Complex Physical Healthcare should be completed for eachchild on the Pathway.

Name of Hospital

Date hospitalised

Transition from Acute Hospital toCommunity Services

Strand 1:

Strand 1: Transition from Acute Hospital toCommunity Services

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The key standard for Strand 1 is:

Every child, having been assessed as having complex physicalhealthcare needs in the hospital setting, should have an agreedtransition/discharge plan involving the hospital, communityservices (both universal and specialist) and the family. Theresources required at home should be provided before the childleaves the hospital or as soon as possible thereafter.

Key outcomes – Strand 1

The key outcomes to be accomplished under this strand are:

• Discharge planning should be an integral part of care within theacute hospital setting and commenced from birth or onadmission.

• Community services should be notified as soon as practical aboutthe child’s admission/transfer/discharge; most likely via themanager of the community children’s nursing team.

• A lead community children’s nurse should be agreed prior totransition/discharge. It is likely that s/he will act as communitycare co-ordinator for the family but if not another member of Truststaff should be assigned to take on this role.

• There should be community in-reach to the family in hospital,preferably by a personal visit(s) or via the telephone.

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• Planning for the transition/discharge should begin as soon aspossible with a multi-disciplinary team meeting and a clear plandevised in agreement with the child, family, hospital andcommunity services.

• Appropriate hospital and community professionals (including thechild’s GP and health visitor) should be invited to becomeinvolved and clear plans should be in place for shared medicalcare of the child with a community paediatrician and GPs.

• Essential equipment and one month’s supplies should beprovided to the family/carers before the transfer takes place.

• Competency based training – with underpinning knowledge -should be initiated and overseen by hospital staff and completedfor essential carers (including family members) prior to discharge.

• Clear lines of communication should be agreed between thefamily and community services; family and hospital; hospital andcommunity services.

• A 24 hour contact number(s) should be provided for the family.Ideally this should be of community staff (if available) butotherwise of ward staff in acute hospital.

• A home visit from community nursing staff ideally should takeplace on the day of discharge or if not possible, a phone call ismade followed by a visit the next day.

• The community care co-ordinator will work in partnership withother services to provide a suitable service plan.


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Responsibilityand name oflead person

Action Step Details of Action takenwith dates

Reasons for deviation

HSC Trust

Acute

HSC Trust

Acute/Community

Step-down/transitional protocols from acute care to communityservices need to be identified in each HSC Trust area. Theseshould also cover discharges from the Royal Belfast Hospital forSick Children to local acute hospitals as well as to communityservices.

Transition/discharge co-ordinators should be appointed (usually)from nursing staff within each acute hospital. They will liaiseacross medical consultants and other specialisms, such as alliedhealth professionals and social work.

Children who cannot be discharged from hospital due to the lackof community provision should be notified to the relevantcommissioning board. HSC Trusts should ensure that they arefulfilling their responsibilities under the Children Order to assessand review children in these circumstances and plan to meettheir needs.

Parents need to be informed on the procedures to be followedwith respect to obtaining funding from commissioners and therecruitment and selection of any healthcare assistants who maybe required.

Record of Actions in Strand 1

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Acute/Community

Acute/Community

Community

Community

Parents need to be given a clear and realistic indication of thesupports that will be available to them on discharge fromhospital and the demands likely to be placed on them.

A lead community nurse should be identified for each childreferred from hospital who will most likely act as community careco-ordinator1. The lead nurse will liaise with the discharge co-ordinator in the hospital and provide community ‘in-reach’ to thefamily.

A local, named community paediatrician should be identifiedwho will co-ordinate medical care, e.g. with GP.

A joint assessment of support needs at home and communitysettings will be undertaken by the hospital staff and the leadcommunity nurse in conjunction with the parents. The lead nursewill involve other community colleagues in this as appropriate –social workers and AHPs – and the voluntary sector.Consideration needs to be given to Understanding the Needs ofChildren in Northern Ireland (UNOCINI) as the core assessmentfor children and young people. The specialist Nursingassessment will link with UNOCINI as required, enhancing theinformation already available.

Record of Actions in Strand 1 cont’d

1 See Key Worker standards produced by CCNUK.http://www.ccnuk.org.uk/skins/CCNUK/downloads/keyworker.pdf


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Community

Community

Community

Community

Community

The lead nurse in conjunction with community colleagues willorder the provision of equipment and supplies and ensure theirdelivery prior to the child’s transfer home, subject to the parent’spreferences.

Assessments are undertaken on any housing adaptations thatmay be required. Arrangements are put in place to facilitate thechild’s care on an interim basis.

Pharmacy arrangements are identified including out-of-hoursarrangements and procedures for reviewing medication.

The recruitment and training of healthcare assistants will beundertaken as required. Support staff rotas will be drawn up andprovided in advance to the family.

A 24 hour emergency contact numbers should be provided forthe family. This could be within the acute hospital for weekendsand night-time. Hospital staff need to be provided with contactnumbers of community staff.


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Acute/Community

Acute

Community

Community

Community

Nursing teams will train parents in any necessary procedures,using agreed evidence based protocols. These protocols will beavailable in writing and shared between nursing teams who maybe involved with the child.

The hospital discharge or transition co-ordinator will maintaincontact with the family for a minimum of one month via personalvisits or telephone calls. This contact could be maintained forlonger if felt appropriate by the co-ordinator and the family.

The support plan agreed prior to the transfer should be reviewedwithin two weeks of the child’s transfer and thereafter at agreedintervals (see Strand 2). The discharge co-ordinator should beinvited to the first review.

The health visitor and school nurses should be informed of thedischarge plans.

Plans for short breaks are developed in conjunction with parents(see Strand 2 section h).



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Date Person making note Comment/Note

Comments/Notes on Strand 1

Date first discharge from acute hospital (if appropriate):

Community SupportServices

Strand 2:

Strand 2: Community SupportServices

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Every child and family should have a multi-agency support planagreed with them for the delivery of co-ordinated actions to meettheir individual needs. This plan should be regularly reviewed.They should be facilitated to enjoy a good quality of life as afamily.


The key outcomes to be accomplished under Strand 2 are:

• Families will have access to up-to-date, accurate information, in arange of accessible formats, about the range of services andsupports available to them in their locality. All professional staffwith whom families come in contact, will also have thisinformation.

• Families will be allocated a named contact person who will co-ordinate the supports available to families. This role should beincluded in the person’s job description and protected timeallocated for this function.

• Each family will have a named ‘core group’ of professionals; thosewho have most contact with the child, such as teacher, therapist,social worker or nurse.

• The support plan will be drawn up in conjunction with familiesand reflect their aspirations and needs for their child and for thefamily.

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• A holistic and multi-agency approach will be used by communitystaff to record the outcomes of assessments, reports and reviews,thereby avoiding the need for multiple procedures and recordforms. These records, which will include the Assessment of thechild’s and family’s needs, will be held by parents and shouldaccompany the child into different settings/agencies thusavoiding parents having to repeat information. (NB This mayrequire a change to existing professional practice around recordkeeping.)

• The core group including the named contact will meet withparents as required to review service plans but at a minimum ofevery six months. Copies of these plans will be made available tofamilies and all relevant service personnel. Parents will be able torequest a review at any time. These reviews could be done inconjunction with other required reviews, such as Looked AfterChildren reviews.

• Strategies for managing risks will be developed in conjunctionwith family carers and shared with all relevant personnel andagencies. These should balance safety with opportunities ofordinary living and be regularly reviewed.

• The children will have timely access to hospital and GPappointments.

• The necessary adaptations, equipment and supplies are availableto families on a timely and reliable basis.

• The child has access to educational and leisure activities.

• Carers will be informed of their right to have an assessmentundertaken of their needs as a carer.

• Carers will be informed about Direct Payments and assisted inmaking a decision about the appropriateness to them.

• Opportunities are provided for parents to have a break fromcaring.

• The emotional well-being of parents and siblings, and their qualityof life is a major focus of reviews and the provision of advice andsupport.


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HSC Trust

HSC Trust

Each family should be allocated a staff member who will act asthe main point of contact for the family and the co-ordinator ofservice inputs. The goal is to provide a co-ordinated approach tosupport and care. The co-ordinator will be the professional whohas most ongoing contact with families and will introduce themto other relevant services and act as a conduit of information forother services. Community children’s nurses may continue tofulfil this role (this may need to be made more explicit than atpresent).The person could also be from voluntary/statutoryprovision if more suited to role.

There may be scope to combine the role of co-ordinator withsome of the functions of care manager as in Adult Services. Forexample, there would be advantages in co-ordinators havingaccess to budgets that can be used to provide emergency shortbreak or augmented home supports on a short-term basis. Thisfunding could be channelled through nursing budgets asbank/relief staffing.

Record of Actions in Strand 2 (NB In this Strand, theactions are grouped into nine sub-strands).

A) KEY ACTIONS – Co-ordination of services

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HSC Trust

Communityco-ordinator



HSC TrustManagers/HSC Board

An up-to-date, electronic directory of services and supportsshould be prepared for each HSC area with contact details ofpersonnel. Copies or print-outs of this should be given to allfamilies and be made widely available to all professionals withwhom families are likely to come into contact.

Families are given the contact details of local support groups forparents and of young people’s advocacy groups.

A ‘service map’ should be created for each individual child andfamily and shared with all services and persons who have aninvolvement with them. Names and contact details should beprovided of all those professionals and agencies included in themap.

Opportunities should be provided for wider family members suchas grandparents to be involved in training and planning for thechild, e.g. through family-group, case conference.

Annual audits are undertaken of the ICP records to identifyimprovements to services and their co-ordination. Summaryreports should be sent to the Regional HSC Board for onwardreferral to DHSSPS.

A. Key actions – Co-ordination of services cont’d

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Comments/Notes on Co-ordination of Services:


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HSC Trust

HSC Trust

CommunityNursing/Acute

CommunityNursing/Acute

Each child/family should be allocated to one nursing team whoco-ordinates all inputs from nursing services in the community.(Presently a variety of nurses may be involved with the one childand family.) This nurse will liaise with the family health visitor.

A funded out-of-hours, on-call service (e.g. up to 10.00 pm) bycommunity nurses for children with complex physical healthneeds should be provided throughout Northern Ireland. HSCTrusts should assess whether it is required in their area.

Opportunities should be made available to nurses within acuteand community settings (e.g. CNLD, district nurses) to developadditional knowledge and competencies in working with childrenwho have complex physical health needs, and in supporting theirfamilies.

All nurses should be inducted and mentored in the provision ofnursing services to the children to whom they have beenallocated, including relief and bank staff. A robust training planneeds to be in place involving acute hospital staff if appropriate.Evidence-based practice should be followed, e.g. contained inrelevant care pathways for the particular condition if available2.

B. Key actions – Nursing and other personal support services

2 The Contact a Family organisation has a useful directory of rare conditions that can assistpractitioners in accessing information in a family-friendly format.http://www.cafamily.org.uk/about.html

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Comments/Notes on Nursing and other personal support services


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HSC Trust

HSC Trust

HSC Trust

HSC Trust

Hospital clinics should synchronise their appointment systemsas far as possible, so that families make a minimum number ofvisits to hospitals/clinics. For example, when multipleappointments are required, these are offered for the same day.Personal Identifiers should make this easier to achieve.

Transport pick-ups in rural areas to take children to hospitalsshould be appropriately timed.

Systems are in place to ensure that children and young peoplewho find it hard to wait, do not have to stay unduly at outpatientclinics, general practice surgeries or child development centres.Where appropriate, double booking times or first/lastappointment times are available for disabled children.

Privacy is ensured when staff are obtaining confidentialinformation about the child and family or when they conveynews that may be distressing to families.

C. Key actions – Access to Hospital and Community Clinics

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HSC Trust

Schools

HSC Trust

Facilities for giving personal care in privacy are available in alllocations in health, social care and education services that areused by families with a child who has personal/health careneeds.

Access to hospital services is regularly audited and improved, inpartnership with disabled children and their parents.

C. Key actions – Access to Hospital and Community Clinics


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Comments/Note on Access to Hospital and Community Clinics:

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HSC Trust

HSC Trust

AmbulanceService

Communitystaff

Children and young people with complex physical health careneeds who are prone to health crises should have open accessto paediatric wards where they are known forassessment/admission (if beds are available), or they are seenurgently on request in A&E departments and GP practices; e.g. a‘Fast Track’ card should be given to these families (e.g. CraigavonArea Hospital use these cards).

A standardized record of all the child’s care needs is preparedthat can be given to the hospital staff on admission.

Ambulance control should maintain a record of the child and thehospital to which he/she should be taken in an emergency.

Contact is maintained between community staff and thechild/family, e.g. through healthcare assistants working with thechild in the hospital and giving parents a break.

D. Key actions – Readmissions to Hospital


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Comments/Notes on Readmissions to Hospital:

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HSC Trust

Therapists

Therapist

Therapists

Therapeutic interventions are agreed and overseen byappropriately trained paediatric therapists.

Parents or carers, children and young people are active partnersin decisions about rehabilitation or therapy services, with agreedgoals for what it is intended to achieve and how they can help.

Therapy is delivered in the most appropriate setting, which mayinclude the home if this suits the child or young person; or wherechildren and young people attend educational settings it isoffered within that setting, and strategies are developed withteachers who support the child's full learning experience.Otherwise therapy appointments are offered outside of schoolhours to ensure a minimum absence from school.

Protocols are agreed for the delivery of interventions by teachersand learning assistants.

E. Key actions – Access to therapy services


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AHPManagers

Reviews are undertaken of local therapy services in order to:

a) Promote self-referral, simplifying the care pathway, and reduceexcessive waits that may affect a child’s development;

b) Improve administrative systems and processes for referral anddischarge, and the effectiveness of outcomes of differenttherapeutic regimes, such as group sessions, and

c) Ensure that the supply of timely therapy services is sufficientand resourced to meet the needs of children and youngpeople who require it, based on assessed needs. This willinvolve increased capacity to ensure that all children andyoung people attending early education settings andmainstream or special schools have equal access to therapy.

E. Key actions – Access to therapy services

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Therapy service – additional action steps Details of Action taken with dates Reasons for deviation

Notes on access to specific therapeutic services


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Comments/Notes on Access to thearpy services:

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HSC Trust

HSC Trust

HSC Trust

HSC Trust/Partneragencies

HSC Trust

Consideration of housing, community equipment and wheelchairneeds is included in the overall planning of community servicesfor children and their families. Multi-agency partnerships are inplace to facilitate this.

Equipment and assistive technology is tailored to the individualneeds of the child and their future development. (NB Theseshould not be means-tested.) These should be provided on atimely basis.

Parents and other carers are given training and support in theuse of the equipment and assistive technology, including who tocontact in an emergency and out-of-hours.

The children are able to use/access the equipment and assistivetechnology they need in all places they typically spend time (e.g.school, home, short-term care settings, and leisure settings).

Deliveries of bulky health equipment and supplies are sufficientlyfrequent so that families are not required to store large amountsin the family home. Local emergency stocks of healthequipment/supplies are obtainable 24 hours a day.

F. Key actions – Access to Housing adaptations and Equipment


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Comments/Notes on Access to Housing adaptations and Equipment:

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HSC Trust

Namedcontact HSCTrust

CommunityNursing/Schools

HSC Trust

Namedcontact HSCTrust

The child’s co-ordinator (or CCN) is involved in planningeducational placements and in the statementing process. Anynecessary equipment should be available in school.

The child’s class teacher and/or support assistant, along withthe school nurse if there is one, should be considered membersof the core team of professionals and should be involved in thedevelopment and review of a common support plan for the childand family.

Written protocols around transporting the children to/from schooland for dealing with medical emergencies should be developedby community health personnel and school staff. Inductiontraining is provided in their use.

HSC Trusts and Education need to work in partnership withregards to training and supervision of Additional SpecialClassroom support who provide care to the child while in theschool setting.

Funding arrangements are in place to provide additional supportto the family during school holidays or when the child is at homefor periods of time due to illness etc.

G. Key actions – Access to Education


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Comments/Notes on Access to Education:

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Social Worker

Social Worker

Social Worker

HSC Trust

HSC Trust

An assessment is undertaken of the child/young person’s needfor short breaks and their preferences for the form these take.

An assessment of Carer’s needs is undertaken and regularlyreviewed. This should include the need for short breaks.Negotiation may be required to reconcile the wishes of youngpeople and family carers.

Families are informed about Direct Payments and how they canbe used to provide breaks from caring.

Families should be informed of all the short break optionsoffered by statutory and voluntary agencies. A choice of shortbreaks should be offered to families, including domiciliarysupport in the family home, or the child being looked afteroutside the family home.

Consideration should be given to the formal use of wider familymembers (who are competent to care for the child) in theprovision of short break care for which they would receivepayment.

H. Key actions – Short break Provision


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HSC Trust

HSC Trust

HSC Trust

Staff working in existing or planned short break services shouldreceive training in the care for children with complex physicalhealthcare needs and ongoing support from nursing and AHPsinvolved with the child.

Young people and parents of children with conditions from whichthey are likely to die before adulthood should be provided withinformation on the NI Children’s Hospice and the services itprovides. The decision to avail of such services should bethrough choice of the child/young person and parents.

The nominated social worker convenes regular LAC reviews ofchildren in receipt of care outside of the family home. Thesemeeting should provide an opportunity to review the short breakneeds of families.

H. Key actions – Short break Provision

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Comments/Notes on Short break Provision :


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Serviceproviders

Nursing team

Nursing team

Nursing team

All services contributing to the child’s care will regularly assessthe risks to the child and to others in the context of their service.Risk management plans will be developed, agreed with the child(where appropriate) and with their parents and the outcomesincluded in the care plan. These plans will be shared with allagencies.

The nursing assessment tool, developed for assessing complexphysical healthcare needs, acts as one vehicle for the multi-professional identification of risks associated with the child’shealth care needs.

For all risks identified within the nursing assessment tool, child-specific risk management protocols should be established andimplemented. These will be shared with family and all personnelin all services involved in the support and care of the child.

An environmental risk assessment is undertaken and completedas part of the discharge planning process from hospital andregularly reviewed.

I. Key actions on managing risk


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Multidisciplinaryteam

Multidisciplinaryteam

At multidisciplinary discharge planning meetings, risks over andabove health related risks should be identified, and riskmanagement strategies implemented that are specific to thechild and family.

Risk management arrangements should be reviewed at regularintervals as part of any review.

I. Key actions on managing risk cont’d

NB The Dignity of Risk handbook published by the Shared CareNetwork has been devised and developed jointly by the Council forDisabled Children and Shared Care Network. It gives an overview ofHealth and Safety issues incorporating a rights based approach,includes the latest information on key areas of risk and providesguidelines and examples of good practice. Price: £30.00 (inc. p&p)ISBN 1-904787-22-3 (2004)

See also Jeanne Carlin’s (2005) book ‘Including me: Managingcomplex health needs in schools and early years setting’. London:Council for Disabled Children.

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Comments/Notes on managing risk

Managing transitions toAdult Service

Strand 3:

Planned Date of Transfer

Strand 3: Managing transitionsto Adult Service

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Every child and family should have an agreed transfer plan toadult services in both acute hospital and community services, andno loss of needed service should be experienced as a result of thetransfer.



• Planning for the transfer should commence around the youngperson’s 14th birthday or earlier as required. Families needsupport and reassurance as they prepare for change and as theywork through it.

• A ‘transitional care nurse’ is appointed in community services toassist with the preparation for change.

• Adult services in acute and community settings should be notifiedat this time about the pending transfer and appropriate staffinvited to attend futures planning meetings.

• In the acute sector, a hand-over meeting should take placebetween the two medical specialists – children and adult - theyoung person and the family. Ideally one lead consultant will benamed if there are two or more consultants involved with thechild. Likewise a transitional care nurse from the children’s wardwill be identified to liaise with adult wards.

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• The young person and family will be given the opportunity tofamiliarise themselves with the adult ward and nursing staff.

• Ideally one named contact will be identified from adult services inthe community.

• The named contact for the young person and family fromchildren’s services will convene a futures planning group for theyoung person which will include representatives from adultservices – such as therapy, social work, day centre as anticipated.Prior to the transfer, they will meet at least annually to review thetransition plan.

• The group from HSC will liaise with their counterparts ineducation to co-ordinate transition planning. One commonTransition Plan will be prepared.

• Clear lines of communication should be agreed between thefamily and adult community services; family and hospital; hospitaland adult community services.

• HSC Trusts will anticipate the budgets that are required to providecontinuity of service provision for assessed needs when the youngperson transfers from Children to Adult Services. The families willnot be wait-listed for services that they continue to need.


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AcuteHospitals

AcuteHospitals

HSC Trusts

Within acute hospitals, a common age of transfer is introducedacross medical specialisms for the transfer of children withcomplex physical healthcare needs to adult services, preferablyaround 18 years of age.

Within acute hospitals, procedures should be put in place to planfor the transfer of children with complex physical health needs toadult medical and nursing services. This could include:

• A named transition nurse from the Children’s ward.

• A hand-over meeting taking place between the consultantdoctors, the young person and the family.

• A visit to the adult ward to which the young person would beadmitted.

In community services, a transitional care nurse is appointed toco-ordinate the transfers from children to adult services. S/hewill act as the main point for other team members in eachservice.


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Namedcontact

Adult servicesHSC Trusts

HSC Trusts

HSC Trusts

Adult services

The family’s named contact in children’s services will beresponsible for convening the transition planning meetings withthe young person and family, and for maintaining contact withtransition planning within education.

An accessible information leaflet should be made available toyoung people and families that details the adult service optionsand contact persons.

If possible there should be continuity of service provision into theadult years, such as healthcare assistants within home, familyplacement providers, direct payments. This will require adultservices to budget in advance for these needs.

Likewise the costs of nursing, therapy, short breaks and otherprovision needs to be budgeted in advance within adult servicebudgets.

Appropriate short breaks should be planned by adult serviceswell in advance of the person requiring them.



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End of Life NeedsStrand 4:

Strand 4: End ofLife Needs

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Every child and family should be helped to decide on an end oflife plan and should be provided with care and support to achievethis as closely as possible.



• Children and families should be supported in their choices andgoals for quality of life to the end.

• Professionals should be open and honest with families when theapproach to the end of life is recognised.

• Joint planning with families and relevant professionals shouldtake place as soon as possible.

• A written plan of care should be agreed including decisions aboutmethods of resuscitation. The Emergency services should beinformed. Care plans should be reviewed and altered to takeaccount of changes.

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• There should be 24-hour access to pain and symptom controlincluding access to medication. Those managing the control ofsymptoms should be suitably qualified and experienced.

• Short break options with medical and nursing input will beavailable to family carers.

• Emotional and spiritual support should be available to the childand the carers.

• Parents should feel in control of events after death and should beenabled to make their own choices, e.g. care of the body andfuneral arrangements.

• The needs of siblings and grandparents should be consideredand included at the time of death and afterwards.

• Bereavement support should be offered for as long as the familyneeds.

NB: The content for this Strand is largely taken from the CarePathway produced by ACT (2004). Further suggestions are welcome.


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Core Team

HSC Staff

HSC Trusts

A plan for end of life care should be documented with the familyand young person. This will include their needs and wishes. Thismay have to be done urgently if the child condition deterioratesrapidly but at other times it can be done in advance once aterminal phase is recognised or in response to a family’sexpressed concerns.

A small core team of key professionals will be identified tosupport the family and child. These persons will be selected fromthose with an involvement with the child and family (in statutoryand voluntary services). The team needs to be open and honestwith the family about the probability that the child’s life isnearing an end.

Someone on the team or known to the team (e.g. palliative carenurse) has the specialised skills and knowledge to support thefamily in approaching the discussion of death and opening thepossibility to the child or young person in order that theycontribute actively to the plans.


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HSC Trusts

HSC Trusts

HSC Trusts

HSC Trusts

The plan will cover a Personal Resuscitation Plan that outlinesthe emergency treatment to be used, e.g. by ambulance crewsand local A&E Departments. Options around organ donationshould be explored and explanations given about post mortems.Parental and child decisions around these issues should berespected.

Written information should be provided to the family about theprocedures and entitlements following death; to includeregistering the death; procedures required for cremation, use offuneral directors who are members of accredited bodies, adviceon benefits and entitlements.

The family and the young person will be enabled to choose theenvironments in which end-of-life care is provided. In Hospice orHospital settings, family members should have 24 hour access.

The family and team will have 24 hour access to paediatricpalliative care specialists and other qualified nursing staff andpaediatricians so that symptoms and pain can be controlled*and unnecessary admissions to hospital avoided.


* Royal College of Nursing. The Recognition and Assessment of Acute Pain in Children:Implementation Guide. London: RCN, 2001


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Core Team

Core Team

NamedContact

Decisions around the removal of life prolonging treatmentsmust be taken in full consultation with the child (if appropriate)and the family and the time provided for them to come to adecision.

Around the time of death, the child and family will be given thenecessary privacy and space. Professionals should be sensitiveto their needs and take their cue from them. The family’scultural and religious beliefs should be respected. Thequestions and concerns of siblings should be addressed.

All those professionally involved with the child should beinformed about the death. The named contact may do this onthe family’s behalf if they wish it. This includes the GP, socialworker, school, AHPs, short break service and hospital staff. Itis important that any department or service expecting futurecontact with the child are informed so that further letters arenot sent out.


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Core Team

HSC Trusts

Members of the core team should maintain contact with thefamily to offer co-ordinated bereavement support through theagency best suited to their needs. Particular care of siblings isneeded. Assistance with dealing with secondary losses could beprovided, such as loss of friendships, financial hardships,physical ill-health.

Professionals who have been closely involved with the care of thedying child and family will have access to emotional andpsychological support.



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Royal College of Nursing. (2001) The Recognition and Assessment ofAcute Pain in Children: Implementation Guide. London: RCN.

Royal College of Paediatrics and Child Health. (1997) Withholding orwithdrawing life saving treatment in children: a framework forpractice. London: RCPCH.

Talbot, K. (2002) What forever means after the death of a child.London: Brunner-Routledge.

NB The Children’s Palliative Care Reflective Model of Supervisioncan be a useful tool for supporting all those professionals involvedwith the care of the dying child.

Useful References

Notes

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Produced by

Department of Health, Social Services & Public Safety,Castle BuildingsBelfast BT4 3SQ

Telephone: (028) 9052 0271

Textphone: (028) 9052 7668

www.dhsspsni.gov.uk

May 2009

Ref 35/2008

integrated care pathway for children and young people with complex physical healthcare ...€¦ ·...

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