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Scottish Diaphragmatic Hernia

Clinical Network

Annual Report for National Services Division

April 2013 – March 2014

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 2013 – March 2014 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 successful national UK event has taken place in September 2013. Care and

information leaflets for professionals and parents have also been finalised and published.

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

period April 2013 – March 2014.

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 annual 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 2013 to

March 2014.

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.

4

• 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 2014/2015, building on the previous

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

• Circulate and audit the use of the following clinical information guidelines: -

o Antenatal

o Inpatient

o Follow-up

• Circulate and audit the use of the following care pathways: -

o Antenatal

o Postnatal

• 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

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

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• Repeat the annual educational event

• 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)

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� 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

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 2013/2014

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. The Clinical Lead

presented these guidelines to the Scottish Paediatric Respiratory Interest Group (SPRING) in

December 2013.

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

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website. The Clinical Lead has presented these at national meetings to neonatal groups

throughout 2013.

Antenatal Guidelines:-

The workgroup has developed guidelines that will offer guiding principles for antenatal

evaluation and management of diaphragmatic hernia. These have been reviewed and agreed

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

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

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

published 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 comments reflected in a final document which

has been agreed, signed-off and published on the network website.

The network has also developed an Antenatal Care Pathway for women whose unborn baby

has been diagnosed with diaphragmatic hernia. Again, 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 comments

reflected in a final document which has been agreed, signed-off and published on the network

website.

Finally, the network has developed an Antenatal Care Record to record Antenatal

Management of congenital diaphragmatic hernia, to facilitate thorough and accurate data

collection for pregnancies affected by diaphragmatic hernia. This has also been reviewed by

the network and comments reflected in a final document which has been agreed, signed-off

and 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

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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 have now been published on the

network website and circulated to network centres for distribution. Two versions appear on the

website – one for downloading/printing, and another for on-line viewing. There are plans to

audit the value of these forms to families using feedback from families.

Roadshows:-

The network originally planned a series of roadshows late 2013. The purpose of these would

be to present and give basic training on the database but also to raise awareness of the

network, website, guidelines, patient information forms etc. These roadshows were to be part

of the network’s engagement strategy that was in the workplan 2012/2013. The main intended

target audience was Obstetrics and Neonatology. The Clinical Lead has presented the

SDHCN guidelines and standards at neonatal network meetings throughout 2013 which were

teleconferenced to units throughout the country.

The network has however reconsidered the strategy of a “travelling roadshow” and is now

preparing for local specialists to present at their local sites. A standardised education package

would be developed by the network for presentation covering antenatal, post-natal and follow-

up. Standard presentations have been emailed to different members of the steering group for

editing.

Education:-

The network has recently held a successful national UK event at the Crowne Plaza hotel in

Glasgow on September 25th 2013. This event was held in conjunction with the Fetal Anomaly

Screening Program CDH Workgroup from England & Wales. International speakers attended

and a summary of evaluation feedback from the event is available from the network office.

The network is planning a Scottish event for 2014/2015.This event will be for clinicians and will

concentrate mainly on case presentation and discussion for all Scottish cases over the last 2

years. Another event is proposed for specialist midwives that will encompass education for all

fetal anomaly presenting to neonatal/paediatric surgery, not just diaphragmatic hernia.

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

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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 was then considered whereby an electronic form will be used to populate

the database that will be hosted by NSD. This database would 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. The aim of for these forms to 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. Following submission of the form, a pdf will be available for the local team to include in

the clinical record.

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

this database. 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 included as an Appendix. 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. An exercise is currently in place to identify these individuals.

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

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

planned in July 2014 with corporate organisations to develop this registry.

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

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

on the Managed Knowledge Network. The Lead Clinician presented the work of the network at

the Immediate Management of Congenital Anomalies Study Day in May 2013, the Neonatal

MCN Education Day in November 2013, and a SPRING Teleconference in December 2013.

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

sponsored family day in August 2013. The Clinical Lead delivered a presentation on the

SDHCN follow-up principles 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.

A further CDH-UK family day in planned in Glasgow for July 2014.

1

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RRAAGG ssttaattuuss kkeeyy

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

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2

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OOuuttccoommee// eevviiddeennccee RRAAGG ssttaattuuss

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PPaarreenntt//PPaattiieenntt IInnvvoollvveemmeenntt

SSttaannddaarrdd 11,, 22,, 55 && 88

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

•• OOrrggaanniissee aa PPaarreennttss FFoorruumm

MMaayy 22001133--OOcctt 22001133

MMaayy 22001122 -- oonnggooiinngg

AApprriill 22001111--

oonnggooiinngg

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oo WWiillll ddiissccuussss tthhiiss wwiitthh iinnddiivviidduuaall ppaarreennttss aatt tthhee MMTTDD DDHH cclliinniicc iinn GGllaassggooww.. GGWW ttoo ccoonnttaacctt ppaarreennttss tthhaatt aallrreeaaddyy eexxpprreesssseedd aann iinntteerreesstt..

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WWoorrkk iinn pprrooggrreessss

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RR

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3

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SSttaannddaarrddss aanndd QQuuaalliittyy IInnddiiccaattoorrss

SSttaannddaarrddss 33 && 44

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IInnppaattiieenntt

AAnntteennaattaall

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AApprriill 22001111--oonnggooiinngg


oo AAnntteennaattaall

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GG

GG

4

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EEdduuccaattiioonn && TTrraaiinniinngg

SSttaannddaarrdd 66 && 77

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

SSeepptt 22001133

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SSuucccceessssffuull eevveenntt hheelldd EEvvaalluuaattiioonn aavvaaiillaabbllee ffrroomm nneettwwoorrkk ooffffiiccee

GG

5

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 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

AAcccceessss DDaattaabbaassee pprroodduucceedd--oonn--lliinnee ffoorrmmss ??..

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

GG

AA

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


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..

SSttaannddaarrddss ddeevveellooppeedd,, ddaattaa ccoolllleeccttiioonn wwiillll ccoommmmeenncceedd

AA

6

•• 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 ,, rrooaaddsshhoowwss

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

JJuunnee 22001122 ––

oonnggooiinngg

JJuunnee 22001122--

JJuunnee 22001122--

oonnggooiinngg

JJuunnee 22001122 ––

oonnggooiinngg

oo PPoossttnnaattaall CCaarree ppaatthhwwaayy ddeevveellooppeedd ,, aaggrreeeedd aanndd ssiiggnneedd--ooffff

oo AAnntteennaattaall CCaarree PPaatthhwwaayy ddeevveellooppeedd,,

aaggrreeeedd aanndd ssiiggnneedd--ooffff

oo AAnntteennaattaall CCaarree RReeccoorrdd ddeevveellooppeedd

aaggrreeeedd aanndd ssiiggnneedd--ooffff

22001111//1122 NNeewwsslleetttteerr ddeevveellooppeedd aanndd aaggrreeeedd,, 22001133//22001144 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

AAllll tthhrreeee ddooccuummeennttss SSiiggnneedd--ooffff aanndd oonn wweebbssiittee

NNeewwsslleetttteerr rreessuurrrreecctteedd

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

MMKKNN wwoorrkk--iinn--pprrooggrreessss..

RRooaaddsshhoowwss nnooww rreeppllaaccee bbyy llooccaall cclliinniicciiaannss pprreesseennttiinngg nneettwwoorrkk eedduuccaattiioonn ppaacckkaaggee llooccaallllyy.. TThhiiss iiss ppllaannnneedd ffoorr 22001144//22001155

GG

AA

GG

AA

AA

7

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 ddeellaayyss iinn aasssseessssmmeenntt//ttrreeaattmmeenntt..

AA

8

Appendix 1 SDHCN MEMBERSHIP April 2013

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

9

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

10

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)

11

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)

12

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”)

13

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

14

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

15

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)

16

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

17

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”)

18

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.

19

Details below show recent data collected relating to outcomes of babies diagnosed with

a diaphragmatic hernia between May 2013 and May 2014.

Baby

ID

Date

Birth

Health

Board

Antenatally

Diagnosed?

NameRef

Unit

TxSpecialist

Unit?

Repair

Done

Surv

Death

UnitSurg/

ECMO

26

27-

May-

13

Not known No Edinburgh Yes Surv Edinburgh

27 17-Jul-

13 Not known No Edinburgh Yes Surv Edinburgh

29 04-

Nov-13 Not known No Edinburgh Yes Surv Edinburgh

28 08-

Nov-13 Not known No Edinburgh Yes Surv Edinburgh

30 23-

Dec-13 Not known No Edinburgh Yes Surv Edinburgh

35 01-Apr-

14

England &

Wales Yes Nottingham Yes Surv Glasgow

20 19-

Sep-13

Dumfries &

Galloway Yes Glasgow Yes Died Glasgow

25

28-

May-

14

England &

Wales Yes Nottingham Yes Surv Glasgow

34 05-

Feb-14 Grampian Yes Glasgow Yes Died Glasgow

17

13-

May-

13

England &

Wales Not known

Royal

Victoria

Infirmary,

Newcastle

Yes Surv Glasgow

23 18-Jul-

13 Highland Yes Aberdeen No Died Aberdeen

24 02-Jun-

14 Fife Yes Glasgow Yes Yes Surv Glasgow

18 10-Jul-

13 Lanarkshire Yes Glasgow Yes Yes Surv Glasgow

21 09-Jan-

14 Highland Yes Glasgow Yes Yes Surv Glasgow

16

08-

May-

13

Lanarkshire Yes Glasgow Yes Yes Died Glasgow

36

26-

May-

14

NHS GG&C Yes Glasgow Yes No Died Glasgow

37 18-Apr-

14

England &

Wales Yes Glasgow Yes Yes Surv Glasgow

13 01-

Mar-13 Borders Yes Glasgow Yes Yes Surv Glasgow

15 02-Apr-

13 Forth Valley No Glasgow Yes Yes Surv Glasgow

20

Baby

ID

Date

Birth

Health

Board

Antenatally

Diagnosed?

NameRef

Unit

TxSpecialist

Unit?

Repair

Done

Surv

Death

UnitSurg/

ECMO

19 01-Jun-

13 NHS GG&C No Glasgow Yes Surv Glasgow

22 31-

Mar-14 Grampian Yes Aberdeen Yes Surv Aberdeen

14 10-

Mar-13 NHS GG&C No Glasgow Yes Yes Surv Glasgow

21

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 2013 –

March 2014.

Description Cost £

Equipment 0

Stationary 91

Hotel Services 48

Hire of Rooms for Meetings 0

Travel/Conferences 0

Total 139

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