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Scottish Diaphragmatic Hernia

Clinical Network

Mid-Year Report for National Services Division

April 2012 – September 2012

Mr Gregor Walker Hugh Kennedy

Clinical Lead Network Manager

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Contents Page No

1. Executive Summary 2

2. Introduction 3

3. Aims/Purpose of Network 3

4. Plans for the Future 4

5. Network governance 5

6. Workplan and Progress over Reporting Period 9

Appendix 1: Network membership Appendix 2: Report on clinical audit indicators Appendix 3: Finance

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1. Executive Summary

The period April 2012 – September 2012 has been a successful time for the Scottish

Diaphragmatic Hernia Clinical Network (SDHCN). The majority of network standards and

guidelines have now been agreed and published, a database produced and ready for data

collection and a Study Day has been organised. Care and information leaflets for

professionals and parents have also been finalised and are ready for publishing.

This Mid-Year workplan report details the progress and development of the Network in the

period April 2012 – September 2012.

12BManaged Clinical Networks

Managed Clinical Networks (MCNs) were first introduced in the Acute Services Review in

1998. The Scottish Executive (now Government) then issued a series of guidance documents

on MCNs (NHS HDL (2002) 69 “Promoting the Development of Managed Clinical Networks in

NHS Scotland”). These documents defined MCNs as:

Linked groups of health professionals and organisations from primary, secondary and tertiary

care, working in a co-ordinated manner, unconstrained by existing professional and health

board boundaries, to ensure equitable provision of high quality clinically effective services

throughout Scotland.

In addition they set out a list of core principles to which all MCNs must adhere. This was

reiterated in the latest guidance issued, HDL (2007) 21 “Strengthening the Role of Managed

Clinical Networks”. As well as confirming the commitment from the Government to the

development of MCNs, this document emphasised the key role that MCNs should play in the

planning and commissioning process, in delivering change and in involving service users.

13BScottish Diaphragmatic Hernia Clinical Network

The NMCN is intended to encompass the diagnosis (preferably antenatal), medical and

surgical treatment and long-term follow up of children born with congenital diaphragmatic

hernia. This condition requires the input of a tertiary centre but many aspects of care can be

managed locally.

Mothers to be with an antenatal diagnosis of Congenital Diaphragmatic Hernia (CDH) should

be offered the most comprehensive and up to date counselling to allow them to plan their

pregnancy and delivery in a Unit with appropriately experienced clinicians. Though surgery is

only undertaken in three Specialist Paediatric Surgical Units in Scotland, local teams will

provide much of the later care for patients close to their own homes. It is desirable that all

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health professionals, parents/carers and patients themselves have equitable and evidence

based treatment plans. This will be facilitated by a NMCN approach.

Key Network aims

• To ensure equity of access to a standardised, high quality care pathway for mother and

baby across Scotland (covering antenatal, perinatal, surgery and long-term follow-up).

• To deliver standardised pathways supporting care delivered as close to home as

clinically possible.

• To develop a service model that is embedded in multidisciplinary working, combined

and integrated care delivery and focused community engagement.

• To collect data to evaluate the service delivery model against standard national clinical

governance checks and benchmark against UK and international performance

measures.

• To introduce a formalised management infrastructure that will support the co-ordinated

strategic long-term planning for future service delivery of DH services (nationally and

regionally)

2. Introduction

This paper has been prepared for the six-monthly review meeting between the National

Services Division and the Scottish Diaphragmatic Hernia Clinical Network (SDHCN). The

paper provides context and progress information on the network in the period April 2012 to

September 2012.

3 Aims/Purpose of the Network

The overall role of SDHCN is to optimise long-term clinical outcome in CDH by:

• Promoting recognition of CDH at Fetal Anomaly Scan (FAS).

• Early access to written information on CDH and specialist multidisciplinary counselling

once antenatal diagnosis is made.

• Developing an appropriate antenatal, delivery and post-natal plan for each fetus with

CDH, based on the antenatal findings and taking into account the mother’s preference.

• Linking clinical personnel who are involved in patient management.

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• Producing an appropriate individualised follow-up plan for each survivor after hospital

discharge, based on clinical need and geographical issues.

• Easy collection of comprehensive data on affected cases through a national dataset to

benchmark with national and international figures.

• Provision of opportunity for clinical development of staff.

• Facilitate research and audit.

4.Plans for the Future

The Network members have agreed new objectives for 2012/2013, building on the previous

year’s workplan objectives. They were as follows:-

• Circulate the following clinical information guidelines: -

o Antenatal

o Inpatient

o Follow-up

• Identify areas for audit and develop protocols for information collection

• Identify and collect an agreed minimum dataset

• Publicise quality standards

• Audit the quality indicators of the agreed standards

• Collect data for clinical management, further research and entry into the international

diaphragmatic hernia database

• Implement a data collection tool

• Facilitate a families group to fully engage with and take on the views of service users

• Repeat the annual educational event

• Fully develop the NES community of practice educational resource on the Managed

Knowledge Network

• Fully develop the website

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• Develop communications and engagement mechanisms to ensure that members of all

maternity hospitals are aware of network pathways (and so are also able to support the

network's audit)

• Develop and agree individualised care pathways for patients with congenital

diaphragmatic hernia

5. Network Governance

Network Function, Structure and Accountability

SDHCN is organised around the three Paediatric Tertiary Centres in Scotland – Aberdeen,

Glasgow and Edinburgh.

The membership of the Network is included as Appendix 1 in this report.

15BSDHCN Steering Group

The purpose of the SDHCN Steering Group is to support and steer the development of the

Network and the services it encompasses. This includes the development of guidelines,

developing education/training opportunities for clinical staff and provides leadership and peer

support for the local teams in the three centres. Steering Group members also have a key

role in ensuring two-way communication between the Network and local teams of clinicians.

The Steering Group is accountable to National Services Division and the Health Boards for:

� Developing a strategic vision for the Network

� Developing strategic alliances for the Network to support and promote its work

� Ensuring the Network meets its agreed objectives

� Supporting the Network Management Team (Core Group)

� Accounting for performance against the National Services Division Service Level

Agreement

The Network encourages active service user representation, with involvement in activities

such as the Steering Group meeting, assisting with the production of the information leaflets,

commenting on documents produced by the Network and giving their opinions via surveys.

16BNetwork Management Team/ Core Group

The Network Management Team/ Core Group is made up of the SDHCN Clinical Lead,

SDHCN Manager, SDHCN Administrator and MCN Department Manager. The Clinical Lead is

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accountable to the Steering Group for ensuring consistent clinical leadership of the Network

and its services and is ultimately accountable for the MCN.

On a day to day basis the SDHCN Manager and Administrator are responsible for the

operational management of the Network. The SDHCN Manager ensures the efficient

organisation of the steering group and sub-group meetings and ensures there is adequate

administrative support for the Steering Group, sub-groups and related business, and maintains

the communication strategy with the newsletter and website. The MCN Department Manager

provides management support to the Clinical Lead and Manager and is responsible for the

project and performance management of the Network and its finance.

6. Workplan and Progress 2011/2012

Full details of the network’s progress towards meeting these priorities are in the work plan

(Please refer to - Work Plan). An overview of this progress is as follows:-

Long-Term Follow Up Guidelines:-

The workgroup has developed guidelines based on the American Academy of Paediatrics

(AAP) guidelines for CDH follow up. These guidelines also include sections on

Neurodevelopmental follow-up and Audiology. These have been reviewed and agreed by

network members and have now been published on the network website.

In-Patient Guidelines:-

The workgroup has developed guidelines that will offer guiding principles for management of

ventilation, manipulation of pulmonary vascular reactivity and timing of surgery. These have

been reviewed and agreed by network members and have now been published on the network

website.

Antenatal Guidelines:-

The workgroup has developed guidelines that will offer antenatal evaluation and management

of diaphragmatic hernia. These are currently being reviewed and the final version will be

published on the network website and also presented on the Study Day in November.

Standards and Quality Indicators:-

Eight standards have been developed by the workgroup and have been circulated and agreed

and signed off by the network. These standards encompass clinical care, as well as education,

data collection and audit and patient information. Each of these standards has at least one

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quality indicator attached to it. These standards are available on Appendix 2. They are also on

the SDHCN Website.

Care Pathways:-

The network has developed a Postnatal Care Pathway for Neonates with diaphragmatic hernia

in Scotland. Different stages of this pathway are linked to relevant standards form the

‘Standards and Quality Indicators’ document that has been published (see above). This

pathway has been reviewed by the network and a final document is ready to be published on

the network website.

Patient Information:-

Two parent information leaflets - Antenatal and Postnatal - have been developed by the

network and have now been agreed and signed-off. These leaflets include clinical information

about the condition, including diagnosis, management, surgery and long term follow-up in

addition to counselling information .The leaflets will also have links to the Voluntary sector.

They have been through the MCN ‘FILES’ process and will now be published on the network

website. There are plans to obtain audit the value of these forms to families using feedback

from families.

Roadshows:-

TThhee nneettwwoorrkk iiss ppllaannnniinngg aa sseerriieess ooff rrooaaddsshhoowwss llaattee 22001122,, eeaarrllyy 22001133.. TThhee ppuurrppoossee ooff tthheessee

wwoouulldd bbee ttoo pprreesseenntt aanndd ggiivvee bbaassiicc ttrraaiinniinngg oonn tthhee ddaattaabbaassee bbuutt aallssoo ttoo rraaiissee aawwaarreenneessss ooff tthhee

nneettwwoorrkk,, wweebbssiittee,, gguuiiddeelliinneess,, ppaattiieenntt iinnffoorrmmaattiioonn ffoorrmmss eettcc.. TThheessee rrooaaddsshhoowwss aarree ppaarrtt ooff tthhee

nneettwwoorrkkss eennggaaggeemmeenntt ssttrraatteeggyy tthhaatt wwaass iinn tthhee wwoorrkkppllaann 22001122//22001133.. TThhee ttaarrggeett aauuddiieennccee

wwoouulldd bbee OObbsstteettrriiccss aanndd NNeeoonnaattoollooggyy..

Education:-

The network has organised a Study Day which will be held in the Lecture Theatre in Queen

Mother’s Hospital RHSC Glasgow in November 2012. The event has a good mix of scientific

and practical topics with a strong emphasis on antenatal and neonatal care and management

of diaphragmatic hernia. The voluntary group cdh.uk is also presenting on the day and a

number of families have agreed to attend. This event will also support communications and

engagement mechanisms by displaying posters sshhoowwiinngg gguuiiddeelliinneess,, ssttaannddaarrddss aanndd ppaattiieenntt

iinnffoorrmmaattiioonn lleeaafflleettss tthhaatt ccaann bbee ppeerruusseedd aanndd ddiissccuusssseedd dduurriinngg lluunncchh.

The event will be evaluated.

The network is then planning a national UK event to be held in Glasgow for 2013.

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Data Collection and Audit:-

The SDHCN Data Collection Subgroup had identified 59 fields that the network considered as

‘minimum core data’ that need to be collected. This made the Clinical Audit System (CAS) not

suitable for the network to use simply because it could not collect all the information the

network required. The network has therefore progressed the development of a Microsoft

Access database to hold this volume of information. Options around hosting this database

and having it available on a website to allow it to be populated on-line by all centres across

Scotland were looked at and proved too costly.

An alternative option has been agreed between the network and NSD whereby an electronic

form will be used to populate the database that will be hosted by NSD. This database will be

off-line so that all centres will input data via the electronic forms. These forms will be posted to

a central mailbox where they will be uploaded to the database by a dedicated Data Manager.

The electronic forms have been developed for individual clinicians to fill in data appropriate to

their area of expertise. These forms will be hosted by SHOW. Presently, the database is

completed and readied for clinical use and the website to host the forms is almost ready to go

live. Clinicians will receive a pdf file of the completed form for clinical recording purposes.

Communication and Engagement Strategy:-

TThhee nneettwwoorrkk iiss ccoommmmiitttteedd ttoo ddeevveellooppiinngg ccoommmmuunniiccaattiioonnss aanndd eennggaaggeemmeenntt mmeecchhaanniissmmss ttoo

eennssuurree tthhaatt mmeemmbbeerrss ooff aallll mmaatteerrnniittyy hhoossppiittaallss aarree aawwaarree ooff nneettwwoorrkk ppaatthhwwaayyss,, ssttaannddaarrddss aanndd

gguuiiddeelliinneess aanndd tthhaatt aallll ffaammiilliieess aaffffeecctteedd bbyy ddiiaapphhrraaggmmaattiicc hheerrnniiaa aarree aawwaarree ooff ppaattiieenntt

iinnffoorrmmaattiioonn lleeaafflleettss.. TThhee nneettwwoorrkk ppllaannss ttoo ddoo tthhiiss tthhrroouugghh rrooaaddsshhoowwss,, bbyy ddeevveellooppmmeenntt ooff tthhee

SSDDHHCCNN wweebbssiittee ((wwwwww..ssddhhccnn..ssccoott..nnhhss..uukk)) aanndd bbyy uuttiilliissiinngg tthhee NNEESS CCoommmmuunniittiieess ooff PPrraaccttiiccee

rreessoouurrccee oonn tthhee MMaannaaggeedd KKnnoowwlleeddggee NNeettwwoorrkk..

9

SSCCOOTTTTIISSHH DDIIAAPPHHRRAAGGMMAATTIICC HHEERRNNIIAA

MMAANNAAGGEEDD CCLLIINNIICCAALL NNEETTWWOORRKK WWOORRKKPPLLAANN 22001122--1133

NNeettwwoorrkk AAiimmss

•• TToo pprroommoottee sseerrvviiccee ddeelliivveerryy aatt tthhee mmoosstt llooccaall ppooiinntt ooff ccoonnttaacctt ssuuppppoorrtteedd bbyy aaggrreeeedd cclliinniiccaall ssttaannddaarrddss aanndd sseerrvviiccee mmooddeell

•• TToo ffaacciilliittaattee eeffffeeccttiivvee sseerrvviiccee iinntteerrffaacceess aanndd ssuuppppoorrtt ggoooodd pprraaccttiiccee iinn mmuullttiiddiisscciipplliinnaarryy aanndd iinntteerraaggeennccyy wwoorrkkiinngg iinn tthhee eessttaabblliisshhmmeenntt ooff aa NNMMCCNN aanndd tthhee sseerrvviiccee ddeelliivveerryy aassssoocciiaatteedd wwiitthh iitt..

•• TToo ffaacciilliittaattee tthhee vvaarriioouuss ssttrraannddss ooff uusseerr iinnvvoollvveemmeenntt iinn sseerrvviiccee ddeelliivveerryy aanndd ffuuttuurree ppllaannnniinngg ooff sseerrvviicceess ((iinncclluuddiinngg ddeettaaiilleedd ppuubblliicc iinnvvoollvveemmeenntt ffrraammeewwoorrkk)) aass iinnddiiccaatteedd iinn HHDDLL MMCCNN gguuiiddeelliinneess aanndd ootthheerr aassssoocciiaatteedd MMCCNN bbeesstt pprraaccttiiccee ddooccuummeennttaattiioonn..

•• TToo pprroovviiddee eeffffeeccttiivvee ggoovveerrnnaannccee ffrraammeewwoorrkk ffoorr aallll ssttrraannddss ooff cclliinniiccaall pprraaccttiiccee iinncclluuddiinngg iinnddiiccaattoorrss ooff iimmpprroovveedd cclliinniiccaall eeffffeeccttiivveenneessss aanndd rreesseeaarrcchh aanndd ddeevveellooppmmeenntt pprraaccttiicceess tthhrroouugghh eessttaabblliisshhmmeenntt ooff tthhee nneettwwoorrkk..

RRAAGG ssttaattuuss kkeeyy

RRAAGG ssttaattuuss DDeessccrriippttiioonn

RREEDD ((RR)) LLiittttllee//nnoo pprrooggrreessss bbeeeenn mmaaddee ttoo ddaattee ttoo aacchhiieevviinngg nneettwwoorrkk oobbjjeeccttiivvee//ssttaannddaarrdd

AAMMBBEERR ((AA)) SSiiggnniiffiiccaanntt pprrooggrreessss bbeeeenn mmaaddee ttoo ddaattee ttoo aacchhiieevviinngg nneettwwoorrkk oobbjjeeccttiivvee//ssttaannddaarrdd,, hhoowweevveerr ffuurrtthheerr wwoorrkk iiss rreeqquuiirreedd ttoo ffuullllyy aacchhiieevvee tthhee nneettwwoorrkk oobbjjeeccttiivvee

GGRREEEENN ((GG)) TThhee nneettwwoorrkk hhaass bbeeeenn ssuucccceessssffuull iinn aacchhiieevviinngg tthhee nneettwwoorrkk oobbjjeeccttiivvee//ssttaannddaarrdd

10

OObbjjeeccttiivvee PPllaannnneedd ssttaarrtt// eenndd ddaatteess

DDeessccrriippttiioonn ooff pprrooggrreessss ttoowwaarrddss mmeeeettiinngg oobbjjeeccttiivvee

OOuuttccoommee// eevviiddeennccee RRAAGG ssttaattuuss

PPAATTIIEENNTT CCEENNTTEERREEDD:: PPrroovviiddiinngg ccaarree tthhaatt iiss rreessppoonnssiivvee ttoo iinnddiivviidduuaall ppeerrssoonnaall pprreeffeerreenncceess,, nneeeeddss aanndd vvaalluueess aanndd aassssuurriinngg tthhaatt ppaattiieenntt vvaalluueess gguuiiddee aallll cclliinniiccaall ddeecciissiioonnss

PPaarreenntt//PPaattiieenntt IInnvvoollvveemmeenntt

SSttaannddaarrdd 11,, 22,, 55 && 88

•• EEnnssuurree aallll cchhiillddrreenn wwiitthh DDHH aanndd tthheeiirr ppaarreennttss//ccaarreerrss hhaavvee eeqquuiittaabbllee aacccceessss ttoo iinnffoorrmmaattiioonn aabboouutt tthheeiirr ccoonnddiittiioonn ttoo aallllooww tthheemm ttoo ccoonnttrriibbuuttee ttoo ddeecciissiioonnss aabboouutt tthheeiirr ccaarree aanndd tthhee ddeevveellooppmmeenntt ooff DDHH sseerrvviicceess

•• EEnnccoouurraaggee aanndd ffaacciilliittaattee tthhee iinnvvoollvveemmeenntt ooff ffaammiilliieess// ppaarreennttss iinn tthhee nneettwwoorrkk aanndd eennggaaggee tthheemm iinn sseerrvviiccee iimmpprroovveemmeenntt..

•• OOrrggaanniissee aa PPaarreennttss FFoorruumm

MMaayy 22001122--SSeepp 22001122

MMaayy 22001122 -- oonnggooiinngg

AApprriill 22001111--

oonnggooiinngg

oo UUppddaattee aanndd ppuubblliisshh nneewwsslleetttteerr ffoorr 22001122//22001133 –– AAiimm ttoo ffiinnaalliissee bbyy ttiimmee ooff eedduuccaattiioonn mmeeeettiinngg iinn NNoovveemmbbeerr 22001122

oo DDiissttrriibbuuttee ppaarreenntt iinnffoo lleeaafflleettss ((AAnntteennaattaall aanndd PPoossttnnaattaall)).. AAuuddiitt tthhee uussee ooff tthheessee iinnffoorrmmaattiioonn lleeaafflleettss aanndd rreeqquueesstt ffeeeeddbbaacckk..

oo PPrreevviioouuss aatttteemmppttss aatt eennggaaggiinngg ppaarreennttss hhaavvee nnoott bbeeeenn ssuucccceessssffuull.. WWiillll ddiissccuussss tthhiiss wwiitthh iinnddiivviidduuaall ppaarreennttss aatt tthhee MMTTDD DDHH cclliinniicc iinn GGllaassggooww.. GGWW ttoo ccoonnttaacctt ppaarreennttss tthhaatt aallrreeaaddyy eexxpprreesssseedd aann iinntteerreesstt..

NNeewwsslleetttteerr ppuubblliisshheedd oonn nneettwwoorrkk wweebbssiittee

BBootthh lleeaafflleettss ccoommpplleetteedd aanndd oonn nneettwwoorrkk wweebbssiittee.. PPllaann ttoo aauuddiitt

NNeeeedd ttoo sseett uupp ppaarreennttss mmeeeettiinngg..

GGoooodd rreepprreesseennttaattiioonn aatt ffoorrtthhccoommiinngg SSttuuddyy DDaayy

GG

AA

AA

11

SSAAFFEE:: AAvvooiiddiinngg iinnjjuurriieess ttoo ppaattiieennttss ffrroomm ccaarree tthhaatt iiss iinntteennddeedd ttoo hheellpp tthheemm

SSttaannddaarrddss aanndd QQuuaalliittyy IInnddiiccaattoorrss

SSttaannddaarrddss 33 && 44

•• DDiissttrriibbuuttee aanndd PPrreesseenntt aa sseett ooff SSttaannddaarrddss aanndd GGuuiiddeelliinneess ttoo ccoovveerr tthhee ffoolllloowwiinngg cclliinniiccaall ppaatthhwwaayyss::--

IInnppaattiieenntt

AAnntteennaattaall

FFoollllooww--uupp

•• DDeevveelloopp aanndd iimmpplleemmeenntt aa rraannggee ooff cclliinniiccaall qquuaalliittyy iinnddiiccaattoorrss ffrroomm tthhee ssttaannddaarrddss ttoo ssuuppppoorrtt aauuddiitt ooff ppeerrffoorrmmaannccee aaggaaiinnsstt ssttaannddaarrddss..

AApprriill 22001111--oonnggooiinngg


oo NNeettwwoorrkk hhaass aallrreeaaddyy ddeevveellooppeedd GGuuiiddeelliinneess ffoorr IInn--PPaattiieenntt CCaarree

oo AAnntteennaattaall GGuuiiddeelliinneess rreeqquuiirree rreevviissiioonn aanndd ddiissttrriibbuuttiioonn

oo NNeettwwoorrkk hhaass ddeevveellooppeedd LLoonngg TTeerrmm FFoollllooww--uupp gguuiiddeelliinneess iinncclluuddiinngg aauuddiioollooggyy aanndd nneeuurrooddeevveellooppmmeennttaall gguuiiddeelliinneess..

oo NNeettwwoorrkk hhaass ddeevveellooppeedd eeiigghhtt ssttaannddaarrddss ooff ccaarree tthhaatt hhaavvee bbeeeenn rreevviieewweedd aanndd aapppprroovveedd bbyy tthhee nneettwwoorrkk.. TThheessee ssttaannddaarrddss eeaacchh hhaavvee aatt lleeaasstt oonnee qquuaalliittyy iinnddiiccaattoorr ttoo mmeeaassuurree aaggaaiinnsstt tthheessee ssttaannddaarrddss.. TThheessee hhaavvee bbeeeenn aaggrreeeedd aanndd ssiiggnneedd--ooffff bbyy tthhee nneettwwoorrkk.. AA ccooppyy hhaass bbeeeenn aattttaacchheedd ((AAppppeennddiixx 22))

AAggrreeeedd aanndd ssiiggnneedd--ooffff.. OOnn wweebbssiittee

DDrraafftt vveerrssiioonn ccuurrrreennttllyy oouutt ffoorr rreevviieeww.. FFiinnaall vveerrssiioonn ttoo bbee pprreesseenntteedd aatt SSttuuddyy DDaayy.. WWiillll tthheenn ppllaaccee oonn nneettwwoorrkk wweebbssiittee..

AAggrreeeedd aanndd ssiiggnneedd--ooffff.. OOnn wweebbssiittee

AAsssseessss qquuaalliittyy ooff ddaattaa ccoolllleeccttiioonn ((sseeee iinn EEffffiicciieenntt))

GG

AA

GG

AA

12

EEFFFFEECCTTIIVVEE:: PPrroovviiddiinngg sseerrvviicceess bbaasseedd oonn sscciieennttiiffiicc kknnoowwlleeddggee

EEdduuccaattiioonn && TTrraaiinniinngg

SSttaannddaarrdd 66 && 77

TThheerree wwiillll bbee cceennttrraallllyy ffuunnddeedd mmuullttii--ddiisscciipplliinnaarryy ttrraaiinniinngg ddaayyss tthhaatt aarree ffuullllyy eevvaalluuaatteedd ((mmaakkiinngg uussee ooff tteelleemmeeddiicciinnee aanndd tteelleeccoonnffeerreenncciinngg)) bbaasseedd oonn aaggrreeeedd ssttaannddaarrddss ddeetteerrmmiinneedd bbyy aa nnaattiioonnaall ttrraaiinniinngg nneeeeddss aannaallyyssiiss aanndd pprrootteecctteedd ttiimmee ffoorr cclliinniicciiaannss ttoo ppaarrttiicciippaattee..

OOrrggaanniissee aanndd hhoolldd aann AAnnnnuuaall EEdduuccaattiioonnaall EEvveenntt

OOrrggaanniissee aanndd ppllaann ““nnaattiioonnaall”” EEdduuccaattiioonnaall EEvveenntt ffoorr 22001133

NNoovv 22001122

AApprriill 22001122 -- oonnggooiinngg

DDaattee aaggrreeeedd ffoorr 22nndd NNoovveemmbbeerr 22001122..

SSttuuddyy DDaayy oorrggaanniisseedd ffoorr QQuueeeenn MMootthheerr’’ss LLeeccttuurree TThheeaattrree,, GGllaassggooww

VVeennuuee ttoo bbee aarrrraannggeedd

SSttuuddyy DDaayy oorrggaanniisseedd,, ffiinnaall pprrooggrraammmmee aaggrreeeedd.. WWiillll bbee eevvaalluuaatteedd

AA

AA

EEFFFFIICCIIEENNTT:: AAvvooiiddiinngg wwaassttee,, iinncclluuddiinngg wwaassttee ooff eeqquuiippmmeenntt,, ssuupppplliieess,, iiddeeaass,, aanndd eenneerrggyy

SSttaannddaarrdd 77

AAggrreeee ddaattaa ccoolllleeccttiioonn,, aauuddiitt aanndd rreesseeaarrcchh --ttoo pprroovviiddee aa bbaassiiss ffoorr ffuurrtthheerr sseerrvviiccee iimmpprroovveemmeenntt aanndd iinn mmoonniittoorriinngg cclliinniiccaall oouuttccoommeess

MMaayy 22001122 -- oo DDaattaabbaassee pprroodduucceedd aanndd aavvaaiillaabbllee ffoorr lliivvee iinnppuuttttiinngg ooff ddaattaa.. MMiinniimmuumm CCoorree DDaattaasseett aaggrreeeedd,, qquuaalliittyy iinnddiiccaattoorrss aaggrreeeedd

oo DDaattaa ccoolllleecctteedd aanndd ssttaannddaarrddss aacchhiieevveedd wwiillll bbee aauuddiitteedd wwhheerree aapppplliiccaabbllee

oo DDaattaa,, wwhheenn ccoolllleecctteedd,, wwiillll bbee uusseedd ffoorr cclliinniiccaall mmaannaaggeemmeenntt,, ffuurrtthheerr rreesseeaarrcchh aanndd eennttrryy iinnttoo tthhee iinntteerrnnaattiioonnaall DDHH ddaattaabbaassee

DDaattaabbaassee pprroodduucceedd..

DDaattaabbaassee wwiillll bbee rroolllleedd--oouutt tthhrroouugghhoouutt cceennttrreess nnaattiioonnaallllyy

GG

AA

13

EEQQUUIITTAABBLLEE:: PPrroovviiddiinngg ccaarree tthhaatt ddooeess nnoott vvaarryy iinn qquuaalliittyy bbeeccaauussee ooff ppeerrssoonnaall cchhaarraacctteerriissttiiccss ssuucchh aass ggeennddeerr,, eetthhnniicciittyy,, ggeeooggrraapphhiicc llooccaattiioonn oorr ssoocciioo--eeccoonnoommiicc ssttaattuuss

SSttaannddaarrdd 11,,22 33,,44,,55 && 88

CClliinniiccaall –– DDeelliivveerriinngg DDHH cclliinniiccaall nneettwwoorrkk ccaarree

•• CClliinniiccaall ccaarree wwiillll bbee ppllaannnneedd ttoo bbee ddeelliivveerreedd aass llooccaallllyy aass ppoossssiibbllee,, ssuuppppoorrtteedd bbyy ootthheerr cceennttrreess vviiaa ccoo--oorrddiinnaatteedd,, iinntteeggrraatteedd ccaarree ppllaannnniinngg.. TThhiiss ccaarree wwiillll bbee ssuuppppoorrtteedd bbyy aaggrreeeedd ssttaannddaarrddss

•• DDeevveelloopp aanndd aaggrreeee ccaarree ppaatthhwwaayyss ffoorr ppeeooppllee wwiitthh ddiiaapphhrraaggmmaattiicc hheerrnniiaa ssuuppppoorrtteedd bbyy aaggrreeeedd ppuubblliisshheedd ssttaannddaarrddss ooff ccaarree

•• DDeevveelloopp ccoommmmuunniiccaattiioonn ssttrraatteeggyy,, iiddeennttiiffyyiinngg ssttaakkeehhoollddeerrss aanndd wwaayyss ooff eennggaaggeemmeenntt,, ii..ee.. nneewwsslleetttteerrss,, wweebbssiittee

•• DDeevveelloopp ccoommmmuunniiccaattiioonnss aanndd eennggaaggeemmeenntt mmeecchhaanniissmmss ttoo eennssuurree tthhaatt mmeemmbbeerrss ooff aallll mmaatteerrnniittyy hhoossppiittaallss aarree aawwaarree ooff nneettwwoorrkk ppaatthhwwaayyss


JJuunnee 22001122 --

JJuunnee 22001122--

JJuunnee 22001122--

JJuunnee 22001122 --

oo EEiigghhtt ssttaannddaarrddss ooff ccaarree hhaavvee bbeeeenn rreevviieewweedd aanndd aapppprroovveedd bbyy tthhee nneettwwoorrkk aalloonngg wwiitthh qquuaalliittyy iinnddiiccaattoorr ttoo mmeeaassuurree aaggaaiinnsstt tthheessee ssttaannddaarrddss.. OOnnggooiinngg ccoolllleeccttiioonn ooff tthhee ddaattaasseett wwiillll hhiigghhlliigghhtt iiff tthheessee qquuaalliittyy iinnddiiccaattoorrss aarree rroobbuusstt..

oo CCaarree ppaatthhwwaayyss ttoo bbee ddeevveellooppeedd aanndd ddiissttrriibbuutteedd ttoo nneettwwoorrkk ffoorr ccoonnssiiddeerraattiioonn

22001111//1122 NNeewwsslleetttteerr ccuurrrreennttllyy uunnddeerr ddeevveellooppmmeenntt

WWeebbssiittee aanndd MMKKNN ccuurrrreennttllyy uunnddeerr ddeevveellooppmmeenntt.. BBootthh wwiillll bbee uusseedd ttoo ccoommmmuunniiccaattee aanndd eennggaaggee wwiitthh ssttaakkeehhoollddeerrss iinncclluuddiinngg mmeemmbbeerrss ooff aallll mmaatteerrnniittyy hhoossppiittaallss aanndd ffaammiilliieess.. TThhiiss wwiillll bbee ddoonnee tthhrroouugghh ddeevveellooppiinngg NNEESS ccoommmmuunniittyy ooff pprraaccttiiccee eedduuccaattiioonnaall rreessoouurrccee oonn tthhee MMKKNN aanndd bbyy ppllaacciinngg gguuiiddeelliinneess aanndd ppaattiieenntt iinnffoorrmmaattiioonn lleeaafflleettss oonn tthhee wweebbssiittee..

PPllaann ttoo aaddddrreessss tthhiiss dduurriinngg rrooaaddsshhoowwss

SSttaannddaarrddss ddeevveellooppeedd,, ddaattaa ccoolllleeccttiioonn ccoommmmeenncceedd

PPoossttnnaattaall CCaarree PPaatthhwwaayy ddeevveellooppeedd aanndd ssiiggnneedd--ooffff

NNeewwsslleetttteerr ccoommpplleetteedd aanndd oonn nneettwwoorrkk wweebbssiittee..

WWeebbssiittee ddeevveellooppeedd,, ccuurrrreennttllyy bbeeiinngg uuppddaatteedd..

RRooaaddsshhoowwss ttoo bbee aarrrraannggeedd ffoorr llaattee 22001122

AA

AA

GG

AA

AA

14

TTIIMMEELLYY:: RReedduucciinngg wwaaiittss aanndd ssoommeettiimmeess hhaarrmmffuull ddeellaayyss ffoorr bbootthh tthhoossee wwhhoo rreecceeiivvee ccaarree aanndd tthhoossee wwhhoo ggiivvee ccaarree

SSttaannddaarrdd 11 && 33

NNaattiioonnaallllyy aaggrreeeedd gguuiiddeelliinneess aanndd pprroottooccoollss iiss aa kkeeyy ccoommppoonneenntt ffoorr tthhee nneettwwoorrkk..

AApprr 22001111--MMaarrcchh 22001133

QQuuaalliittyy AAssssuurraannccee aanndd ssttaannddaarrddss aanndd oonnggooiinngg ddaattaa ccoolllleeccttiioonn wwiillll iiddeennttiiffyy aannyy ddeellaayyss iinn aasssseessssmmeenntt//ttrreeaattmmeenntt..

AA

1

Appendix 1

SDHCN MEMBERSHIP April 2012

Sub-Groups

Aberdeen Data Collection Inpatient Guidelines

Kalous Peter Cons Neonatologist RACH Graham Tydeman (Chair) Fraser Munro (Chair)

Patel Yatin Cons Paediatric Surgeon RACH Ben Stenson Ben Stenson

Edinburgh Carl Davis Jonathan Coutts

Stenson Ben Cons Neonatologist RHSC Jan Leslie Jillian McFadzean

Munro Fraser Cons Paediatric Surgeon RHSC Margaret Evans Petr Kalous

McFadzean Jillian Cons in Paediatric Anaesthesia and Intensive Care RHSC Sandra Whitelaw Richard Thompson

Hacking Belinda RHSC Morag Liddell Gregor Walker

Cooper Sarah Cons Obstetrician RHSC

Urquhart Don RHSC Long-term follow up Antenatal Guidelines

Cunningham Steve Judith Simpson (Chair) Alan Cameron

Evans Margaret Pathology Amanda McCabe

McCabe Amanda Cons Paediatric Surgeon RHSC Don Urquhart Patient Information leaflet

Tayside Jonathan McCormick Gregor Walker (Chair)

McCabe Amanda Cons Paediatric Surgeon Ninewells Morag Liddell Carl Davis

McCormick Jonathan Ninewells Lyndsey Hunter

Leslie Jan Obstetric ultrasound Ninewells Trevor Richens

Glasgow Kerry Kasem

Coutts Jonathan Cons Neonatologist RHSC Steve Cunningham

Walker Gregor Cons Neonatalogist and Paediatric Surgeon RHSC

Kasem Kerry Consultant Neonatal Medicine PRMH

Liddell Morag Neonatal Intensive Care Coordinator RHSC

Richens Trevor Cons Paediatric Cardiologist RHSC

Simpson Judith Cons Neonatologist RHSC

Whitelaw Sandra Specialist Midwife Fetal Medicine SGH

Cameron Allan Cons Obstetrician SGH

Hunter Lyndsey Cardiology Registrar RHSC

Davis Carl Cons Neonatal and Paediatric Surgeon RHSC

Appendix 1

2

Fife

Tydeman Graham Cons Obstetrician Kirkcaldy

3

Appendix 2

The background

No specific standards exist for the management of Congenital Diaphragmatic Hernia (CDH), although guidelines for neonatal management are readily available. Two Cochrane reviews pertain to the management of CDH (iNO and late vs early surgery).

The generic Standards for MCN include the following

Standard 1: Organisation – Management Arrangements and Accountability

Standard 2: Clinical – Delivering CDH clinical network care

Standard 3: Multidisciplinary working

Standard 4: Staff education and Training

Standard 5: Audit, Monitoring, Research and Development

Standard 6: Patient Focus and Public Partnership

Most other MCN have developed at least 5-6 standards.

Individually developed standards should:

o have a sound evidence base

o focus on clinical issues

o directly relate to the objectives of the MCN

o be clear and measurable

o follow the patient pathway, and

o be consistent with other MCNs of the same topic across Scotland

From the generic standards, I suggest that we should have at least one standard from the clinical subgroups (generic standard 2), and one standard from each of the categories 3-6.

Suggested standards for SDHCN:

Standard 1 Clinical – Antenatal Care

Standard 2 Clinical – Counselling

Standard 3 Clinical – In patient management

Standard 4 Clinical – Follow-up

Standard 5 Multidisciplinary working

Standard 6 Staff Education

Standard 7 Audit & monitoring

Standard 8 Patient information

4

Standard 1: Clinical (Antenatal Care)

Standard Statement 1:

Following identification of a congenital diaphragmatic hernia (CDH) on booking scan or fetal anomaly scan (FAS), the expectant mother will be offered a further detailed examination at a specialist fetal medicine service within 2-5 working days.

Rationale

At present, the best available prognostic antenatal criteria are based on liver position, lung head ratio and fetal echocardiography.

Time interval to referral is based Fetal Anomaly Screening Programme (FASP) guidelines.

Reference:

o http://fetalanomaly.screening.nhs.uk/

o Jani JC, Benachi A, Nicolaides KH, et al. Prenatal prediction of neonatal morbidity in survivors with congenital diaphragmatic hernia: a multicenter study. Ultrasound in Obstetrics & Gynecology;33(1):64-9, 2009

o Jani J, Cannie M, Sonigo P, et al. Value of prenatal magnetic resonance imaging in the prediction of postnatal outcome in fetuses with diaphragmatic hernia. Ultrasound in Obstetrics & Gynecology;32(6):793-9, 2008

Essential Criteria

1.1 With the introduction of routine anomaly scans, the expectation is that around 60% of patients will be identified antenatally.

1.2 A minimum dataset for antenatal scans has been agreed by the SDHMCN.

1.3 Data on fetal anatomical and physiological parameters are collated in a location that is accessible for staff involved in counselling, perinatal and postnatal treatment.

Indicator of Standard

1 Referred to Specialist Fetal Medicine Unit (Y/N)

5

Standard 2: Clinical (Antenatal Counselling)


When a CDH has been diagnosed antenatally, families will be offered multidisciplinary counselling. Ideally, counselling should include obstetricians, neonatologists, and neonatal surgeons but not necessarily all at one visit.

Rationale

To ensure that families are fully informed of the likely peri- and postnatal management possibilities.

Reference:

o Aite L, Trucchi A, Nahom A, Casaccia G, Zaccara A, Giorlandino C, Bagolan P. Antenatal diagnosis of diaphragmatic hernia: parents' emotional and cognitive reactions. Journal of Pediatric Surgery;39(2):174-8, 2004

Essential Criteria

2.1 An information leaflet that has been designed and endorsed through the SDHMCN will be offered to the families in conjunction with counselling.

2.2 Counselling should ideally be planned to occur during two separate sessions in the second and third trimester.


2 Counselled by Obstetrician/Neonatologist/Surgeon (Name, Date)

6

Standard 3: Clinical (Inpatient Management)


Neonates born outwith specialist centres should be discussed with the relevant specialist centre within 2 hours of diagnosis.

Rationale

To ensure that recommended management principles are employed from outset and to encourage discussion regarding optimal timing of transfer

Reference:

o SDHCN Steering Group opinion of best practice.

Essential Criteria

3.1 Each specialist centre should have a designated pathway for contact and discussion

3.2 The Neonatal Transport Service should be contacted by the referring hospital following discussion of the eligibility and appropriateness of transfer


3 Time to Referral (measured in “Birth Details”)

7

Standard 4: Clinical (Inpatient Management)


Newborns with CDH will be managed according to agreed guidelines that have been ratified by the SDHCN

Rationale

Survival from CDH has been shown to improve with adoption of neonatal management guidelines.

Reference:

o Antonoff MB, Hustead VA, Groth SS, Schmeling DJ. Protocolized management of infants with congenital diaphragmatic hernia: effect on survival. Journal of Pediatric Surgery;46(1):39-46, 2011

o Bagolan P, Casaccia G, Crescenzi F, Nahom A, Trucchi A, Giorlandino C. Impact of a current treatment protocol on outcome of high-risk congenital diaphragmatic hernia. Journal of Pediatric Surgery;39(3):313-8, 2004

Essential Criteria

4.1 Inpatient management guidelines, produced by the SDHMN, offer guiding principles for management of ventilation, manipulation of pulmonary vascular reactivity and timing of surgery

4.2 Principles of management will be available on the website

4.3 Aspects of management will be discussed at educational study days to ensure information is current

Indicators of Standard

4a Repair done (Y/N)

4b If no repair done, reason why not

4c Maximum Peak Inspiratory Pressure on IMV

4d Highest and lowest pCO2 in first 24 hours

8

Standard 5: Multidisciplinary Working & Follow-up


Outpatient follow-up will be conducted to an agreed protocol

Rationale

Children who survive CDH are known to have long-term morbidity, with some aspects only becoming apparent at a later stage

Reference:

o Gischler SJ, Mazer P, Duivenvoorden HJ, van Dijk M, Bax NM, Hazebroek FW, Tibboel D. Interdisciplinary structural follow-up of surgical newborns: a prospective evaluation. Journal of Pediatric Surgery;44(7):1382-9, 2009

o Lally KP, Engle W. Postdischarge follow-up of infants with congenital diaphragmatic hernia. Pediatrics;121(3):627-32, 2008

Essential Criteria

5.1 Specific needs should be assessed for individual patients with emphasis on nutritional, respiratory and developmental outcome

5.2 Multiple health care practitioners may be involved in ongoing care and these personnel should be aware of the potential morbidity in CDH

5.3 Local follow-up should be encouraged if adequate resources are available to offer a streamlined service


5a Record of different specialities that have reviewed in out-patients

5b Post-discharge Hearing screening

9

Standard 6: Staff Education


The Network will provide regular education for staff involved in managing patients with CDH and each specialist centre will be represented and will encourage and facilitate staff to attend.

Telehealth links will be utilised to facilitate this where appropriate.

Rationale

Ensure staff are aware of current management options and outcome data

Reference:

o http://www.sdhcn.nhs.uk

o http://www.sctt.nhs.uk/

Essential Criteria

6.1 The Network will arrange yearly educational days with locations to be rotated to encourage attendance from all centres

6.2 Topics covered will include presentations that will focus on each discipline involved in the care of families and patients with CDH

6.3 Educational days will be advertised in all paediatric and maternity units with adequate notice


6 Network to record date of education day, topics and attendance (each centre)

10

Standard 7: Audit & Monitoring


The network will record activity, management and outcome of patients with CDH

Rationale

A national database will provide a greater understanding of the aetiology, demographics, management strategies and outcome for CDH in Scotland.

Reference:

o Doyle NM, Lally KP. The CDH Study Group and advances in the clinical care of the patient with congenital diaphragmatic hernia. Seminars in Perinatology;28(3):174-84, 2004

o Ontario Congenital Anomalies Study Group. Apparent truth about congenital diaphragmatic hernia: a population-based database is needed to establish benchmarking for clinical outcomes for CDH. Journal of Pediatric Surgery;39(5):661-5, 2004

Essential Criteria

7.1 Completion of SDHCN core dataset for CDH by each centre

7.2 Regular distribution of data during staff education days, website and newsletters


7 Network completion rate of core dataset

11

Standard 8: Patient Information


An information leaflet will distributed to parents of children with CDH (including prospective parents) with details of possible clinical expectations and links/contact details for further information and support.

Rationale

Parents will be provided with an information leaflet that covers antenatal and post-natal management possibilities to reinforce/augment information given at counselling, during in-patient stay and following discharge (or death)

Reference:

o Aite L, Trucchi A, Nahom A, Casaccia G, Zaccara A, Giorlandino C, Bagolan P. Antenatal diagnosis of diaphragmatic hernia: parents' emotional and cognitive reactions. Journal of Pediatric Surgery;39(2):174-8, 2004

o Weiner EA, Billamay S, Partridge JC, Martinez AM. Antenatal education for expectant mothers results in sustained improvement in knowledge of newborn care. Journal of Perinatology;31(2):92-7, 2011

o Keatinge D, Stevenson K, Fitzgerald M. Parents' perceptions and needs of children's hospital discharge information. International Journal of Nursing Practice;15(4):341-7, 2009

Essential Criteria

8.1 SDHCN has produced written information covering antenatal and postnatal management

8.2 The leaflet is also be available as a document on the website

8.3 The leaflet will be reviewed every 2 years to ensure accurate contemporaneous information is included


8a Parents offered Information leaflet antenatally (in “Birth details”)

8b Parents offered Information leaflet after birth (in “Outcome-Discharge”)

12

Summary of Standard Statements


Following identification of a congenital diaphragmatic hernia (CDH) on booking scan or fetal anomaly scan (FAS), the expectant mother will be offered a further detailed examination at a specialist fetal medicine service within 2-5 working days.


When a CDH has been diagnosed antenatally, families will be offered multidisciplinary counselling. Ideally, counselling should include obstetricians, neonatologists, and neonatal surgeons but not necessarily all at one visit.


Neonates born outwith specialist centres should be discussed with the relevant specialist centre within 2 hours of diagnosis


Newborns with CDH will be managed according to agreed guidelines that have been ratified by the SDHMCN


Outpatient follow-up will be conducted to an agreed protocol


The Network will provide regular education for staff involved in managing patients with CDH and each specialist centre will be represented and will encourage and facilitate staff to attend. Telehealth links will be utilised to facilitate this where appropriate.


The network will record activity, management and outcome of patients with CDH


An information leaflet will distributed to parents of children with CDH (including prospective parents) with details of possible clinical expectations and links/contact details for further information and support.

13

Appendix 3

3BFinancial Report

SDHCN receives an annual budgetary allocation of £5000 from NSD to support the Network

running costs. The following is a breakdown of the expenditure of the budget for April 2012 –

September 2012.

Description Cost £

Equipment 0

Stationary 0

Hotel Services 0

Hire of Rooms for Meetings 0

Travel/Conferences 0

Total 0

scottish diaphragmatic hernia clinical network · the network has developed a postnatal care...

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