scottish diaphragmatic hernia clinical network · 13b scottish diaphragmatic hernia clinical...

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Scottish Diaphragmatic Hernia

Clinical Network

Annual Report for National Services Division

April 2014 – March 2015

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 6

Appendix 1: Network membership Appendix 2: Standards for the Management of Diaphragmatic Hernia including report on clinical indicators. Appendix 3: Examples of Feedback from Education Event Appendix 4: Finance Report

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1. Executive Summary

The period April 2014 – March 2015 has been a successful time for the Scottish

Diaphragmatic Hernia Clinical Network (SDHCN). All of the network standards and guidelines

produced have now been agreed and published, and are available on the networks website

and the Managed Knowledge Network (MKN). We have now begun to gather data, identifying

live-born cases and antenatal cases through networking with other centres. We have also

began to audit the use of some of the guidelines and pathways. Finally, a successful national

UK event has taken place in October 2014. Plans are now in place to audit the usefulness of

care and information leaflets for professionals and parents.

This Annual workplan report details the progress and development of the Network in the

period April 2014 – March 2015.

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

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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

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 annual 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 2014 to March

2015.

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.

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• 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.

• 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 2015/2016, building on the previous

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

• Continue to audit the use of the following clinical information guidelines: -

o Antenatal

o Inpatient

o Follow-up

• Continue to audit the use of the following care pathways: -

o Antenatal

o Postnatal

• Audit the quality indicators of the agreed standards

• Audit the use of and views on the Patient Information forms that have been circulated.

• Identify areas for audit and develop protocols for information collection

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

diaphragmatic hernia database

• Implement a data collection tool

• Repeat the annual educational event

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

Knowledge Network

• Fully develop the website

• 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)

• Undertake presentation of network educational packages at local sites around Scotland.

This will focus on antenatal, postnatal and follow-up in addition to rraaiissiinngg aawwaarreenneessss ooff

tthhee nneettwwoorrkk,, wweebbssiittee,, gguuiiddeelliinneess,, ppaattiieenntt iinnffoorrmmaattiioonn ffoorrmmss eettcc

• 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

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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 Programme Support Officer and Senior Programme Manager. The

Clinical Lead is 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 Programme Support Officer 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 Senior Programme 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 2014/2015

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:-

Audit of Guidelines/Care Pathways:-

The network has begun to audit the use of the Antenatal guidelines and Antenatal Care

Pathway around Scotland.

Patient Information:-

The network has now begun auditing the two parent information leaflets - Antenatal and

Postnatal – developed last year, circulated to clinicians and distributed to families. The focus is

on use and usefulness to families. Any feedback will be collated and used to improve services.

Education:-

The network held a successful national event at the Edinburgh Conference Centre in October

2014. This event concentrated mainly on case presentation and discussion for all Scottish

cases over the last 2 years. There were also speakers on antenatal, inpatient and follow-up

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management. A summary of evaluation feedback from the event is available from the network

office with an example of the feedback shown in Appendix 3.

The network is planning another event for 2015/2016.This event will be for clinicians and

families and the network has linked with the UK national charity, CDH-UK who will be heavily

involved in the event.

A standardised education package has been developed by the network for presentation

covering antenatal, post-natal and follow-up, in addition to raising awareness of the network,

website, guidelines, patient information forms etc. These will be presented locally around the

country.

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 originally progressed the development of a Microsoft Access

database to hold this volume of information, with electronic on-line forms filled in by local

clinicians around Scotland populating the database.

Unfortunately, there have been a number of problems with the technical aspects of hosting

this database and the network has now begun negotiations for a UK-wide Registry.

The network has however, used alternative methodology during 2014-2015 to collect data.

Identifying cases post-natally is "reasonably" straightforward because they will be treated at

only 3 hospitals in Scotland (the children's hospitals in Aberdeen, Edinburgh and Glasgow),

and case identification has been achieved by emails from the Clinical Lead to Network

members in the tertiary centres. These data have been collated by Mr Carl Davis to the

access database locally, and a summary of the data is available in Appendix 2. The more

difficult task is prospectively identifying pregnancies where this diagnosis is made, particularly

if mothers/families decide not to continue with the pregnancy. The network has agreed that to

capture antenatal data there would have to be a named person in each maternity unit across

the country. These individuals have been identified and contacted to arrange a national

network of antenatal reporters.

Representatives from the Network met with CDH-UK in May 2014 to discuss funding a UK

Registry. CDH-UK has identified development of a national registry as a key aim for the charity

and has considerable research funds to support this. The database developed by the SDHCN

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is being used as a template for developing this UK-wide registry. Further meetings have taken

place in 2014 and 2015 with corporate organisations to develop this registry. CDH-UK have

completed a UK national survey to establish clinicians views on such a registry and the

majority view was for a detailed database with collection of ongoing follow-up data.

Representatives from the SDHCN continue to be closely involved in the organisation of this.

Communication and Engagement Strategy:-

The network is committed to developing communication and engagement mechanisms to

ensure that members of all maternity hospitals are aware of network pathways, standards and

guidelines and that all families affected by diaphragmatic hernia are aware of patient

information leaflets. The network initially planned to do this roadshows but decided that

producing an education package for local clinicians to present locally was a more effective

way of achieving this objective. Other ways will be through development of the SDHCN

website ((wwwwww..ssddhhccnn..ssccoott..nnhhss..uukk)) and by utilising the NES Communities of Practice resource

on the Managed Knowledge Network which the network has begun to use.

Members of the SDHCN were involved in the MMBRACE national collabrorative’s perinatal

confidential enquiry into CDH which was reported in December 2014. The SDHCN has

commented on the recommendations of the report. Of note, the SDHCN clinical pathways

were reported as an example of good practice in the “Key Findings” of the report

(https://www.npeu.ox.ac.uk/downloads/files/mbrrace-

uk/reports/Perinatal%20CDH%20Report%202014%20Full.pdf ).

Patient engagement has also been facilitated with Network Members attending a CDH-UK

sponsored family day in Glasgow, in August 2014. The Clinical Lead delivered a presentation

on the SDHCN to the group. There are good links with the CDH-UK charity, and SDHCN

members continue to engage with CDH-UK to promote awareness of CDH nationally.

1

SSCCOOTTTTIISSHH DDIIAAPPHHRRAAGGMMAATTIICC HHEERRNNIIAA

MMAANNAAGGEEDD CCLLIINNIICCAALL NNEETTWWOORRKK WWOORRKKPPLLAANN 22001144--1155

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

2

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 22001144--OOcctt 22001144

MMaayy 22001122 -- oonnggooiinngg

AApprriill 22001111--

oonnggooiinngg

oo UUppddaattee aanndd ppuubblliisshh nneewwsslleetttteerr ffoorr 22001144//22001155 –– AAiimm ttoo ffiinnaalliissee bbyy OOccttoobbeerr 22001144

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..

oo PPrreesseennttaattiioonn ttoo CCDDHH--UUKK ffaammiilliieess ggrroouupp iinn AAuugg 22001144 bbyy CClliinniiccaall LLeeaadd.. AAllll ffaammiilliieess iinnvviitteedd ttoo eennggaaggee wwiitthh NNeettwwoorrkk..

22001144//22001155 NNeewwsslleetttteerr nnooww ddeevveellooppeedd aanndd ppuubblliisshheedd oonn wweebbssiittee 22001144//1155..

PPaattiieenntt IInnffoo lleeaafflleettss oonn wweebbssiittee aanndd ddiissttrriibbuutteedd ttoo ssiitteess tthhrroouugghhoouutt SSccoottllaanndd--nneettwwoorrkk hhaavvee ddeevveellooppeedd ffeeeeddbbaacckk qquueessttiioonnnnaaiirree ttoo aauuddiitt uusseeffuullnneessss ooff lleeaafflleettss..

WWoorrkk iinn pprrooggrreessss.. CCDDHH--UUKK hhaavvee ssuuggggeesstteedd tthheerree iiss nnoo nneeeedd ffoorr aa sseeppaarraattee SSccoottttiisshh ggrroouupp

GG

AA

AA

3

OObbjjeeccttiivvee PPllaannnneedd ssttaarrtt// eenndd ddaatteess

DDeessccrriippttiioonn ooff pprrooggrreessss ttoowwaarrddss mmeeeettiinngg oobbjjeeccttiivvee

OOuuttccoommee// eevviiddeennccee RRAAGG ssttaattuuss

oo DDiissccuussssiioonn wwiitthh CCDDHH--UUKK rree hhaavviinngg lliinnkkss wwiitthh SSccoottttiisshh ffaammiilliieess

SSttrraatteeggyy wwiillll iinncclluuddee::--

ii))RRee--iissssuuee ooff ‘‘ggeettttiinngg iinnvvoollvveedd lleeaafflleettss’’ aatt cclliinniiccss..

iiii)) EEdduuccaattiioonn EEvveenntt ppllaannnneedd ffoorr AAuuttuummnn 22001155..--pprrooggrraammmmee wwiillll bbee ttaaiilloorreedd ffoorr bbootthh pprrooffeessssiioonnaallss aanndd ffaammiilliieess wwiitthh CCDDHH--UUKK aallssoo iinnvvoollvveedd iinn eevveenntt..

FFaammiillyy pprrooggrraammmmee wwiillll iinncclluuddee ddiissccuussssiioonnss wwiitthh bbootthh ffaammiilliieess aanndd CCDDHH--UUKK aabboouutt nneettwwoorrkk iinnvvoollvveemmeenntt aanndd ccrreeaattiinngg SSccoottttiisshh ppaarreennttss ffoorruumm lliinnkkeedd ttoo nneettwwoorrkk..

iiiiii))ggeett ffeeeeddbbaacckk ffrroomm

ffaammiilliieess rreeggaarrddiinngg ppaattiieenntt iinnffoorrmmaattiioonn lleeaafflleett qquueessttiioonnnnaaiirreess tthhaatt hhaavvee bbeeeenn iissssuueedd aatt cclliinniiccss..

AA

4

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

SSttaannddaarrddss aanndd QQuuaalliittyy IInnddiiccaattoorrss

SSttaannddaarrddss 33 && 44

•• DDiissttrriibbuuttee aanndd AAuuddiitt 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 AAnntteennaattaall

oo IInn--PPaattiieenntt

oo 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..

HHaavvee aallll bbeeeenn ssiiggnneedd--ooffff aanndd ppuubblliisshheedd oonn tthhee wweebbssiittee--hhaavvee bbeegguunn ttoo aauuddiitt aawwaarreenneessss aanndd uussee ooff aanntteennaattaall gguuiiddeelliinneess ((55 ssiitteess hhaavvee rreessppoonnddeedd)) aanndd ppllaann ttoo aauuddiitt ootthheerrss..--EEvviiddeennccee aavvaaiillaabbllee ffrroomm nneettwwoorrkk ooffffiiccee

HHaass bbeeeenn cciirrccuullaatteedd,, rreevviieewweedd aanndd aaggrreeeedd.. PPoosstt--nnaattaall ccaasseess iiddeennttiiffiieedd -- ssttaannddaarrddss aasssseesssseedd rreellaatteedd ttoo tthheessee ((aavvaaiillaabbllee ffrroomm CClliinniiccaall LLeeaadd))

AA

AA

5

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 ppllaann ““NNaattiioonnaall”” EEdduuccaattiioonnaall EEvveenntt ffoorr 22001144

OOcctt 22001144

EEvveenntt hheelldd oonn 3311sstt OOccttoobbeerr 22001144 aatt CCoonnffeerreennccee CCeennttrree EEddiinnbbuurrgghh..

SSuucccceessssffuull eevveenntt hheelldd EEvvaalluuaattiioonn aavvaaiillaabbllee ffrroomm nneettwwoorrkk ooffffiiccee

GG

6

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 ––

oonnggooiinngg

oo CCaassee IIddeennttiiffiiccaattiioonn ffoorr lliivvee--bboorrnn ccaasseess tthhrroouugghh nneettwwoorrkkiinngg wwiitthh ootthheerr cceennttrreess.. DDiissccuussssiioonn ooff llaasstt 22 yyeeaarrss lliivvee--bboorrnn ppaattiieennttss ccaasseess aatt SSttuuddyy DDaayy

oo FFoorrmmaall ddaattaabbaassee ddeessiiggnneedd aanndd aavvaaiillaabbllee ffoorr lliivvee ccoollllaattiioonn ooff ddaattaa ((iinncclluuddiinngg aanntteennaattaall ccaasseess)).. MMiinniimmuumm CCoorree DDaattaasseett aaggrreeeedd.. QQuuaalliittyy iinnddiiccaattoorrss aaggrreeeedd

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

DDaattaa aavvaaiillaabbllee ffrroomm CClliinniiccaall LLeeaadd

AAwwaaiittiinngg UUKK wwiiddee rreeggiissttrryy

DDaattaabbaassee hhaass nnoott bbeeeenn rroolllleedd oouutt dduuee ttoo nneeggoottiiaattiioonnss ffoorr UUKK--wwiiddee RReeggiissttrryy??

GG

AA

RR

7

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

•• DDiissttrriibbuuttee aanndd aauuddiitt aaggrreeeedd 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,, pprreesseennttaattiioonnss..


JJuunnee 22001122 ––

oonnggooiinngg

JJuunnee 22001122--

JJuunnee 22001122--

oonnggooiinngg

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 PPoossttnnaattaall CCaarree ppaatthhwwaayy ddeevveellooppeedd,, aaggrreeeedd && ssiiggnneedd--ooffff

oo AAnntteennaattaall CCaarree PPaatthhwwaayy ddeevveellooppeedd,, aaggrreeeedd && ssiiggnneedd--ooffff

oo AAnntteennaattaall CCaarree RReeccoorrdd ddeevveellooppeedd aaggrreeeedd && ssiiggnneedd--ooffff

22001144//1155 NNeewwsslleetttteerr ddeevveellooppeedd aanndd aaggrreeeedd..

WWeebbssiittee aanndd MMKKNN ccuurrrreennttllyy uunnddeerr ddeevveellooppmmeenntt.. BBootthh wwiillll bbee uusseedd ttoo ccoommmmuunniiccaattee aanndd eennggaaggee wwiitthh ssttaakkeehhoollddeerrss iinncclluuddiinngg mmeemmbbeerrss ooff aallll mmaatteerrnniittyy hhoossppiittaallss aanndd ffaammiilliieess.. NNEESS ccoommmmuunniittyy ooff pprraaccttiiccee eedduuccaattiioonnaall rreessoouurrccee oonn tthhee MMKKNN hhaass aallssoo bbeeeenn ddeevveellooppeedd.. GGuuiiddeelliinneess,, ccaarree ppaatthhwwaayyss aanndd ppaattiieenntt iinnffoorrmmaattiioonn lleeaafflleettss

SSttaannddaarrddss aasssseesssseedd aaggaaiinnsstt lliivvee bboorrnn ppaattiieenntt ddaattaa

AAllll tthhrreeee ddooccuummeennttss SSiiggnneedd--ooffff aanndd oonn wweebbssiittee--bbeegguunn ttoo aauuddiitt aanntteennaattaall ddooccuummeennttss--ppllaannss ttoo aauuddiitt ppoossttnnaattaall.. EEvviiddeennccee AAvvaaiillaabbllee ffrroomm NNeettwwoorrkk OOffffiiccee..

NNeewwsslleetttteerr rreessuurrrreecctteedd

WWeebbssiittee ddeevveellooppeedd,, NNeewwsslleetttteerr,, ppaattiieenntt iinnffoorrmmaattiioonn lleeaafflleettss,, ssttaannddaarrddss,, gguuiiddeelliinneess aanndd ccaarree ppaatthhwwaayyss aallll aaggrreeeedd ccuurrrreennttllyy oonn

AA

AA

GG

GG

8

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

AApprriill 22001144 -- oonnggooiinngg

aavvaaiillaabbllee oonn bbootthh..

EEdduuccaattiioonnaall ppaacckkaaggeess ffooccuussiinngg oonn aanntteennaattaall,, ppoossttnnaattaall aanndd ffoollllooww--uupp aass wweellll aass rraaiissiinngg aawwaarreenneessss ooff nneettwwoorrkk uunnddeerr ddeevveellooppmmeenntt..

wweebbssiittee aanndd MMKKNN..

..

PPrreesseennttaattiioonn ttoo nneeoonnaattaall MMCCNN DDeecc 22001133.. LLooccaall pprreesseennttaattiioonnss ttoo bbee ddeelliivveerreedd bbyy iiddeennttiiffiieedd ““cchhaammppiioonnss””

AA

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 22001133--MMaarrcchh 22001144

QQuuaalliittyy AAssssuurraannccee aanndd ssttaannddaarrddss aanndd oonnggooiinngg ddaattaa ccoolllleeccttiioonn wwiillll iiddeennttiiffyy aannyy iinneeqquuaalliittyy ooff ccaarree

AA

9

Appendix 1 SDHCN MEMBERSHIP April 2015

Aberdeen Sub-Groups

Kalous Peter Cons Neonatologist RACH Data Collection Inpatient Guidelines

Patel Yatin Cons Paediatric Surgeon RACH Graham Tydeman (Chair) Fraser Munro (Chair)

Edinburgh Ben Stenson Ben Stenson

Stenson Ben Cons Neonatologist RHSC Carl Davis Jonathan Coutts

Munro Fraser Cons Paediatric Surgeon RHSC Jan Leslie Jillian McFadzean

McFadzean Jillian Cons in Paediatric Anaesthesia and Intensive Care RHSC Margaret Evans Petr Kalous

Hacking Belinda RHSC Sandra Whitelaw Richard Thompson

Cooper Sarah Cons Obstetrician RHSC Morag Liddell Gregor Walker

Urquhart Don RHSC

Cunningham Steve Consultant Respiratory Paediatrician RHSC Long-term follow up Antenatal Guidelines

Evans Margaret Pathology RHSC Judith Simpson (Chair) Alan Cameron

McCabe Amanda Cons Paediatric Surgeon RHSC Amanda McCabe

Tayside Don Urquhart Patient Information leaflet

McCabe Amanda Cons Paediatric Surgeon Ninewells Jonathan McCormick Gregor Walker (Chair)

McCormick Jonathan Consultant Respiratory Paediatrician Ninewells Morag Liddell Carl Davis

Leslie Jan Obstetric ultrasound Ninewells Lyndsey Hunter

Glasgow Kerry Kasem

Coutts Jonathan Cons Neonatologist RHSC Steve Cunningham

Walker Gregor Cons Neonatal and General Paediatric Surgeon RHSC

Kasem Kerry Consultant Neonatal Medicine PRMH

Liddell Morag Neonatal Intensive Care Coordinator RHSC

Simpson Judith Cons Neonatologist RHSC

Whitelaw Sandra Specialist Midwife Fetal Medicine SGH

Cameron Allan Consultant Obstetrician SGH

Wu Pensee Specialist Registrar in Fetal Medicine RHSC

Davis Carl Cons Neonatal and General Paediatric Surgeon RHSC

Patel Neil Cons Neonatologist RHSC

Fife

Tydeman Graham Cons Obstetrician Kirkcaldy

Appendix 1

10

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

11

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)

12

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)

13

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”)

14

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

15

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

16

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)

17

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

18

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”)

19

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.

21

Appendix 4

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 2014 –

March 2015.

Description Cost £

Equipment

Stationary

Hotel Services

Hire of Rooms for Meetings 1740

Travel/Conferences

Total 1740

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