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Scottish Diaphragmatic Hernia Clinical

Network

ANNUAL REPORT 2015/16

Lead Clinician: Mr Gregor Walker

Programme Manager: Hugh Kennedy

Scottish Diaphragmatic Hernia Clinical Network (SDHCN): Annual report

2

Contents

Executive summary ............................................................................................................................................ 3

Introduction......................................................................................................................................................... 4

Aim/ Purpose/ Mission Statement of network.................................................................................................... 4

Report against Workplan.................................................................................................................................... 5

Plans for the year ahead .................................................................................................................................. 10

Network governance ........................................................................................................................................ 11

Detailed Description of Progress over Reporting Period................................................................................. 12

Workplan 2016/2017 ........................................................................................................................................ 18

Appendix 1: Network membership .................................................................................................................. 22

Appendix 2: Finance ........................................................................................................................................ 24


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Executive summary This report provides an overview of the Scottish Diaphragmatic Hernia Clinical Network’s Network’s key achievements in the financial year from 1st April 2015 to 31st March 2016 and plans for the forthcoming financial year. Key achievements include the delivery of a multi-disciplinary programme of healthcare; professional education in diaphragmatic hernia; collection of some useful data on all Scottish cases referred to one of the three specialist units and collecting some limited feedback from families on the patient information leaflets. The network also has the distinction of being recognised in the Mothers and Babies –Reducing Risk through Audit and Confidential Enquiries across the UK (MBRRACE-UK) report published in December 2014. One of the key findings of this study was that they reported that the SDHCN clinical pathways were examples of good practice. This was against their findings that in most parts of the UK

services were not patient centred.

Plans for 2016/17 include undertaking a stakeholder analysis and review of its communication and engagement strategy, developing its data collection methodology so that more quality indicators can be measured, initiating patient/parent engagement and continuing to deliver education.


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Introduction The Scottish Diaphragmatic Hernia Clinical Network (SDHCN) was designated as a national managed

clinical network in 2008.

The NMCN encompasses 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. The network facilitates consistency to ensure that all health professionals, parents/carers and

patients themselves have equitable and evidence based treatment plans.

To date the NMCN has undertaken work to create pathways and guidelines for the management of CDH at antenatal, inpatient and follow up stages. Parent information leaflets have been developed to ensure all parents get appropriate information at antenatal and postnatal stages. The network has developed a website to share information about CDH and all materials developed by the network are available here to professionals and families. The network has also developed and published 8 evidence based standards of best practice, aligned to different stages of the patient pathway. Each of these standards has a measurable quality indicator.

Aim/ Purpose/ Mission Statement /Designation objectives of network The overall role of SDHCN is to optimise long term clinical outcomes in CDH by:

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

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).

Developing an appropriate antenatal, delivery and postnatal plan for each fetus with CDH, based on

the antenatal findings and taking into account the mother’s preference.

To deliver standardised pathways supporting care delivered as close to home as clinically possible

To collect data to evaluate the service delivery model against national clinical governance checks

and benchmark against UK and international performance measures.

To introduce a formalised management infrastructure that will support the coordinated strategic long term planning for future service delivery of DH services (nationally and regionally)

Identify training needs and facilitate the design, development and delivery of education and training both for clinicians directly involved in the treatment of mothers and babies with CDH.


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Report against Workplan Data

There were 20 births in this reporting period with a confirmed diagnosis of CDH known to the Network (reporting period Nov 2014 to December 2015). This information is collected through the review of all CDH cases presented at the annual educational meeting and represents the number of cases referred to one of the three specialist units. However, to date we have not been able to access the information required to ascertain if these cases represent all confirmed diagnosis in Scotland during this period as there is currently

no national register available.

Of the 20 births, 12 were diagnosed antenatally and 7 of these were diagnosed outwith a specialist centre. The network’s antenatal guideline recommends that where this happens the case should be discussed with a specialist centre within 5 days of diagnosis and then the woman offered referral to that centre for management of the pregnancy and birth. Review of all of these cases shows that this standard was met

(100%). The majority of this management was in Glasgow. The table below breaks down this information.


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Of the 8 births diagnosed postnatally, 50% were born outwith a specialist centre. The network sets a standard that these cases should be discussed with the relevant specialist centre within 2 hours of diagnosis. A review of the 4 babies born outwith specialist centres shows that in all 4 cases this standard was met (100%). There were also 2 births which had a late diagnosis. The table below breaks down this

information.


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Patient Survival Rate

As at the end of the reporting period, there was a 100% survival rate to discharge however one patient still remains in hospital in Glasgow.

Three babies were given surfactant which the SDHCN in-patient guidelines do not recommend. In all three cases the babies were born out with a specialist centre. This anomaly will be followed up and investigated by the network as part of the 2016/2017 workplan. These babies were born at 36, 39 and 40 weeks

gestation.

The table below depicts the surgical information for the network.

Data collection for CDH has been challenging and has to date been captured through the review of cases at the annual education event. Going forward, the network plans to use the existing Badger neonatal system to capture some basic information supported by the Information Management Service within the

National Network Management Service and working in collaboration with the regional neonatal networks.

The capture of information about any fetus identified with a CDH antenatally is even more difficult as the condition is rare and health professionals may encounter very few. It is critical that prospective parents are given appropriate information and counselling at this stage as recommended by both the antenatal guideline and pathway developed for professionals and the information leaflet for parents. A review of information held by ISD on terminations of pregnancies over the last 5 years identified that there were a small number of terminations with CDH. The reasons for these terminations are currently unknown and it is also not known what the whether these families were given appropriate information and counselling and this is what the Network would wish to address. The Network will look to explore the development of a surveillance type system to be alerted to any identified cases and ensure the prospective parents are given

the appropriate advice.


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Professional Education

The Network held a successful national education event at the Teacher Building in Glasgow in November 2015. The morning session included speakers on antenatal, inpatient and follow up management. The afternoon session concentrated on case presentation and discussion for all Scottish cases of CDH over the previous two years. A further event is planned for 2016. A summary of the evaluation from the report is

shown below:-

The event was attended by 63 people, 52 feedback forms were completed (83%). The feedback received

was split into the professional groups below.

As seen above, the delegates were a good mix of different disciplines and overall, the majority felt that there was no bias or conflict of interest evident in the course.

Delegates were asked to rate each component on a scale of 1(poor) – 5(excellent).

The relevance of this CPD activity to the delegate’s educational needs and the overall quality of education were thought to be of a high standard with each element being rated in the top two fields by over 85% as

evidenced in the charts below.

Opinion of the venue was favourable. This was reflected in the general comments with reference made to

good central location and catering.


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Relevance of Educational Needs

Overall Quality of Education offered

Additional feedback regarding the speakers was received:

Excellent day. All speakers highly knowledgeable. Thanks.

Educational and entertaining.

Most informative. Very educational and set at a good level.

Mr Walker was an excellent host for the day.

Interesting topics.

Very good speakers. Easy to listen to interesting content.

Only 2% felt that the stated learning aims/objectives of the course were not met, 81% deemed the printed learning aims/objectives to be met with 17% failing to provide an answer. The following comments were made:

Information and knowledge gained today will be useful and some can certainly be integrated into my

practice. However, mostly I will be involved antenatally at ultrasound.

Some topics too detailed for nursing.

Very informative day and have gained lots of knowledge and evidence based care.


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A general comment on how helpful the CDH leaflet is for counselling patients, thank you and a plea:

it would be helpful to have information leaflets online for the other conditions discussed to ensure

consistency of information given to the parents during the counselling process.

Guideline/Pathway Review

A survey has been conducted to review the awareness of and use of the antenatal guidelines and pathways previously developed by the network. Although a few boards did not respond, the overall results of this

have been positive with a summary of findings below.

Health board/ Site Awareness Diagnosis

Referral (past 5 years)

Forth Valley N Y Y

Fife Y Y Y

Ayrshire Y Y Y

Inverness N Y Y

Dundee Y Y Y

Lanarkshire N Y Y

Glasgow Y Y Y

Edinburgh Y Y Y

The table above depicts that despite 3 health boards not having an awareness of the pathway they are still working within the guidelines that have been set out within it for diagnosis and referral. The network plans to address the lack of awareness of the antenatal guideline with the remaining boards as part of the

engagement with antenatal services in the 2016/17 workplan.

Plans for the year ahead

The Network has identified a number of priority areas for 2016/17:

Reviewing network organisation. In 2016/17, the Network plans to undertake a stakeholder

analysis and review its communications and engagement to ensure that it is structured to be able to effectively deliver its objectives and workplan. Engagement is challenging as CDH makes up a small part of health professionals case load so the network will explore further working in partnership with

the regional neonatal networks as part of this process.

Data collection. The Network plans to explore what data can be collected through existing

systems such as Badger to help report against the standards identified. Identifying all foetal diagnoses with CDH is challenging but important to ensure that all prospective parents are given the appropriate advice and support. The Network will explore the use of a surveillance type system as

an alert to any cases identified and ensure the right support is given.

Patient/ Parent Engagement. Recognising the importance of patients and parents views driving

the work of the Network, there are plans to undertake a clinic questionnaire to identify what is important to them at key stages through their journey. This will enable the Network to identify and progress any areas for improvement. The Network has links to CDH-UK and will work with them on further on engagement opportunities. The voluntary group are planning a Scottish event in August

2016 which will give the network an opportunity to engage with both CDH-UK and Scottish families.

Education. The Network plans to hold another annual study day which will comprise of didactic talks and peer review of CDH cases in Scotland over the previous year. The Network will also work with the neonatal networks to identify opportunities to build CDH education into their wider

programme of neonatal education.


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Service model review. Building on the information captured through engagement with families,

data collection and review of adverse events, the Network will review the service model to ensure

that it is optimal.

A more detailed report is supplied in the Workplan 2016-2017 shown after the 2015/2016 workplan.

Network governance The SDHCN has established core governance structures to ensure it operates as a nationally commissioned MCN in line with the Scottish Government’s core principles for MCN’s and delivers on its agreed aims and objectives. This has included the development and ratification of a new service level agreement for 2015-2017; as well as terms of reference. SDHCN is organised around three Paediatric Tertiary Centres in Scotland-Aberdeen, Glasgow and Edinburgh but has multi-disciplinary membership from

all Scottish services.

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


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Detailed Description of Progress over Reporting Period

SSCCOOTTTTIISSHH DDIIAAPPHHRRAAGGMMAATTIICC HHEERRNNIIAA

MMAANN AAGGEEDD CCLLIINNIICCAALL NNEETTWWOORRKK WWOORRKKPPLLAANN 22001155--1166

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 mmuullttiiddiisscciipplliinnaarr yy 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 ffuu llllyy aacchhiieevvee

tthhee nneettwwoorrkk oobbjjeeccttiivvee

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


13

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 aa llllooww tthheemm ttoo ccoonnttrriibbuuttee ttoo ddeecciissiioonnss

aabboouutt tthheeiirr ccaarree aanndd tthhee ddeevveellooppmmeenntt ooff DDHH sseerrvviicceess

EEnnccoouurraaggee aanndd ffaacciilliittaattee tthhee iinnvvoollvveemmeenntt ooff ffaammiilliieess//

MMaayy 22001155--

MMaarrcchh 22001166

MMaayy 22001155 --

oonnggooiinngg

oo UUppddaattee aanndd ppuubblliisshh nneewwsslleetttteerr ffoorr

22001155//22001166

oo AAuuddii tt tthhee uussee ooff ppaattiieenntt iinnffoorrmmaattiioonn

lleeaafflleettss.. QQuueessttiioonnnnaaiirreess hhaavvee bbeeeenn

ddiissttrriibbuutteedd bbuutt oonnllyy aa ssmmaallll nnuummbbeerr ooff

rreessppoonnsseess hhaavvee bbeeeenn rreecceeiivveedd..

oo PPrreevviioouuss aatttteemmppttss aatt eennggaaggiinngg ppaarreennttss

22001155//22001166

NNeewwsslleetttteerr nnooww ddeevveellooppeedd aanndd

ppuubblliisshheedd oonn

wweebbssiittee 22001155//1166..

PPaattiieenntt IInnffoo lleeaafflleettss

oonn wweebbssiittee aanndd

ddiissttrriibbuutteedd ttoo ssiitteess tthhrroouugghhoouutt SSccoottllaanndd--

nneettwwoorrkk hhaavvee

ddeevveellooppeedd ffeeeeddbbaacckk

qquueessttiioonnnnaaiirree ttoo

aauuddiitt uusseeffuullnneessss ooff

lleeaafflleettss.. FFeeeeddbbaacckk ttoo

ddaattee aavvaaiillaabbllee ffrroomm

nneettwwoorrkk ooffffiiccee

SSoommee ffeeeeddbbaacckk ffrroomm

‘‘ggeettttiinngg iinnvvoollvveedd ‘‘

BB

AA

AA


14

OObbjjeeccttiivvee PPllaannnneedd

ssttaarrtt// eenndd

ddaatteess

DDeessccrriippttiioonn ooff pprrooggrreessss ttoowwaarrddss

mmeeeettiinngg oobbjjeeccttiivvee OOuuttccoommee// eevviiddeennccee RRAAGG

ssttaattuuss

ppaarreennttss iinn tthhee nneettwwoorrkk aanndd eennggaaggee tthheemm iinn sseerrvviiccee

iimmpprroovveemmeenntt..

OOrrggaanniissee aa PPaarreennttss FFoorruumm

AApprriill 22001111--

oonnggooiinngg

hhaavvee hhaadd lliimmiitteedd ssuucccceessss..

lleeaafflleettss.. PPllaann ttoo uussee

ffeeeeddbbaacckk ttoo sstteeeerriinngg

ggrroouupp oonn ppaatt iieenntt

vviieewwss ffoorr

iinnccoorrppoorraattiinngg iinnttoo

wwoorrkk ppllaann..

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

SSttaannddaarrddss aanndd QQuuaalliittyy IInnddiiccaattoorrss

SSttaannddaarrddss 33 && 44

AAuuddiitt aa sseett ooff SSttaannddaarrddss aanndd GGuuiiddeelliinneess ttoo ccoovveerr tthhee

ffoolllloowwiinngg cclliinniiccaall ppaatthhwwaayyss::--

IInnppaattiieenntt

AAnntteennaattaall

FFoollllooww--uupp


oonnggooiinngg

oo AAnntteennaattaall

oo IInn--PPaattiieenntt

oo LLoonngg TTeerrmm FFoollllooww--uupp gguuiiddeelliinneess

((iinncclluuddiinngg aauuddiioollooggyy aanndd

nneeuurrooddeevveellooppmmeennttaall gguuiiddeelliinneess))..

HHaavvee aa llll bbeeeenn ssiiggnneedd--ooffff

aanndd ppuubbll iisshheedd oonn tthhee

wweebbssiittee--hhaavvee bbeegguunn ttoo

aauuddiitt aawwaarreenneessss aanndd

uussee ooff aanntteennaattaall gguuiiddeelliinneess ((88 ssiitteess hhaavvee

rreessppoonnddeedd)) aanndd ppllaann ttoo

aauuddiitt ootthheerrss..--EEvviiddeennccee

aavvaaiillaabbllee iinn mmaaiinn bbooddyy

ooff rreeppoorrtt..

GG


15

EEFFFFEECCTTIIVVEE:: PPrroovviiddiinngg sseerrvviicceess bbaasseedd oonn sscciieennttiiffiicc kknnoowwlleeddggee

EEdduuccaattiioonn && TTrraaiinniinngg

SSttaannddaarrdd 66 && 77

TThheerree wwii llll bbee cceennttrraall llyy ffuunnddeedd mmuullttii--ddiisscciipplliinnaarryy

ttrraaiinniinngg ddaayyss tthhaatt aarree ffuullllyy eevvaalluuaatteedd ((mmaakkiinngg uussee ooff

tteelleemmeeddiicciinnee aanndd ttee lleeccoonnffeerreenncciinngg)) bbaasseedd oonn aaggrreeeedd

ssttaannddaarrddss ddeetteerrmmiinneedd bbyy aa nnaattiioonnaall ttrraa iinniinngg nneeeeddss

aannaallyyssiiss aanndd pprrootteecctteedd ttiimmee ffoorr cclliinniicciiaannss ttoo ppaarrttiicc iippaattee..

OOrrggaanniissee aanndd ppllaann ““NNaattiioonnaall ”” EEdduuccaattiioonnaall EEvveenntt ffoorr

22001155

NNoovv 22001155

EEvveenntt hheelldd oonn 66tthh

NNoovveemmbbeerr 22001155 aatt

TTeeaacchheerrss BBuuiillddiinngg GGllaassggooww..

SSuucccceessssffuull eevveenntt hheelldd

EEvvaalluuaattiioonn aavvaaiillaabbllee iinn

mmaaiinn bbooddyy ooff rreeppoorrtt ..

BB


16

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 22001155 ––

oonnggooiinngg

oo CCaassee IIddeennttiiff iiccaattiioonn ffoorr ll iivvee--bboorrnn ccaasseess tthhrroouugghh nneettwwoorrkkiinngg wwiitthh ootthheerr cceennttrreess..

DDiissccuussssiioonn ooff llaasstt 22 yyeeaarrss lliivvee--bboorrnn

ppaattiieennttss ccaasseess aatt SSttuuddyy DDaayy

oo DDaattaa,, wwhheenn ccoolllleecctteedd,, wwiillll bbee uusseedd ffoorr

cclliinniiccaall mmaannaaggeemmeenntt,, ffuurrtthheerr rreesseeaarrcchh

aanndd eennttrryy iinnttoo tthhee iinntteerrnnaatt iioonnaall DD HH ddaattaabbaassee

DDaattaa aavvaaiillaabbllee iinn mmaaiinn bbooddyy ooff rreeppoorrtt..

SSoommee ddaattaa hhaass bbeeeenn

ccoolllleecctteedd mmaannuuaallllyy

aanndd tthhee NNeettwwoorrkk iiss

eexxpplloorriinngg nneeww ooppttiioonnss ffoorr ddaattaa ccaappttuurree iinn

22001166//1177..

BB

AA

EEQQUUIITTAABBLLEE:: PPrroovviiddiinngg ccaarree tthhaatt ddooeess nnoott vvaarryy iinn qquuaalliitt yy 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 ddeell iivveerreedd aass llooccaallllyy

aass ppoossssiibbllee,, ssuuppppoorrtteedd bbyy ootthheerr cceennttrreess vviiaa ccoo--

oorrddiinnaatteedd,, iinntteeggrraatteedd ccaarree ppllaannnniinngg.. TThhiiss ccaarree wwiill ll bbee

ssuuppppoorrtteedd bbyy aaggrreeeedd ssttaannddaarrddss


oonnggooiinngg

oo EEiigghhtt ssttaannddaarrddss ooff ccaarree hhaavvee bbeeeenn

rreevviieewweedd aanndd aapppprroovveedd bbyy tthhee

nneettwwoorrkk aalloonngg wwiitthh qquuaall iittyy iinnddiiccaattoorr ttoo

mmeeaassuurree aaggaaiinnsstt tthheessee ssttaannddaarrddss..

OOnnggooiinngg ccoolllleeccttiioonn ooff tthhee ddaattaasseett wwiillll

SSoommee ssttaannddaarrddss

aasssseesssseedd aaggaaiinnsstt lliivvee

bboorrnn ppaattiieenntt ddaattaa ((mmaaiinn

bbooddyy ooff rreeppoorrtt))..

IISSDD MMaatteerrnnii ttyy ddaattaa aallssoo

AA


17

DDiissttrriibbuuttee aanndd aauuddiitt aaggrreeeedd ccaarree ppaatthhwwaayyss ffoorr ppeeooppllee wwiitthh dd iiaapphhrraaggmmaattiicc hheerrnniiaa ssuuppppoorrtteedd bbyy aaggrreeeedd

ppuubblliisshheedd ssttaannddaarrddss ooff ccaarree

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

nneewwsslleetttteerrss,, wweebbssiittee,, pprreesseennttaatt iioonnss..

DDeevveelloopp ccoommmmuunniiccaattiioonnss aanndd eennggaaggeemmeenntt

mmeecchhaanniissmmss ttoo eennssuurree tthhaatt mmeemmbbeerrss ooff aallll mmaatteerrnniittyy

hhoossppiittaallss aarree aawwaarree ooff nneettwwoorrkk ppaatthhwwaayyss

AApprriill 22001155 ––

oonnggooiinngg


oonnggooiinngg


oonnggooiinngg

hhiigghhlliigghhtt iiff tthheessee qquuaalliitt yy 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

22001155//1166 NNeewwsslleetttteerr ddeevveellooppeedd aanndd aaggrreeeedd..

WWeebbssiittee aanndd MMKKNN ccuurrrreennttllyy uunnddeerr

ddeevveellooppmmeenntt.. BBootthh wwii llll 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.. GGuuiiddeell iinneess,, ccaarree ppaatthhwwaayyss

aanndd ppaattiieenntt iinnffoorrmmaattiioonn lleeaafflleettss

aavvaaiillaabbllee oonn bbootthh..

EEdduuccaattiioonnaall ppaacckkaaggeess ffooccuussiinngg oonn

aanntteennaattaall,, ppoossttnnaattaall aanndd ffoollllooww--uupp aass wweellll aass rraaiissiinngg aawwaarreenneessss ooff nneettwwoorrkk

uunnddeerr ddeevveellooppmmeenntt..

hhaass bbeeeenn ccoolllleecctteedd..

((AAvvaaii llaabbllee ffrroomm nneettwwoorrkk

ooffffiiccee))

AAllll tthhrreeee ddooccuummeennttss SSiiggnneedd--ooffff aanndd oonn

wweebbssiittee--bbeegguunn ttoo aauuddiitt

aanntteennaattaall ddooccuummeennttss--

ppllaannss ttoo aauuddiitt ppoossttnnaattaall..

NNeewwsslleetttteerr rreessuurrrreecctteedd

WWeebbssiittee ddeevveellooppeedd,,

NNeewwsslleetttteerr,, ppaattiieenntt

iinnffoorrmmaattiioonn lleeaaff lleettss,,

ssttaannddaarrddss,, gguuiiddeelliinneess

aanndd ccaarree ppaatthhwwaayyss aallll aaggrreeeedd ccuurrrreennttllyy oonn

wweebbssiittee aanndd MMKKNN..

AAwwaarreenneessss hhaass bbeeeenn

rraaiisseedd iinn aa nnuummbbeerr ooff

bbooaarrddss bbuutt tthhee nneettwwoorrkk hhaass ssttiillll ttoo rreeaacchh ttaarrggeett

wwhhiicchh iiss aallll bbooaarrddss..

GG

BB

GG

AA


18

2016/2017 Workplan – Scottish Diaphragmatic Hernia Clinical Network

Objective

Number SMART Objective Linked

Dimensions of

Quality

Planned start/ end

dates

Detailed Plan Available

/ Owner

Description of progress towards meeting objective as at

31/03/2016

Outcome RAGB status

SDHCN-

2016-01 Data Collection

Measure agreed QI’s from published standards focusing on audit of :-

a)antenatal pathway

b)postnatal pathway

c)in-patient

management

Use of various data collection tools will be explored including badger net and on-line antenatal surveillance system.

3,4,5,6 01/04/2016 – 31/03/2017 Yes

Lead Clinician/Network

Manager/Data

Manager

QI’s that have begun to be

measured:-

Audit of outcome of neonates born outwith a specialist centre with a CDH and referred to a

specialist centre.

Evidence provided of continuous quality improvement (CQI) to ensure equity of access to a standardised, high quality care pathway for mother and baby across Scotland (covering antenatal, perinatal, surgery and follow-up).


19

Objective


Dimensions of

Quality

Planned start/ end

dates


/ Owner


31/03/2016

Outcome RAGB status

SDHCN-

2016-02

Hold an annual education event concentrating on a mixture of case presentation and discussion for all Scottish cases over the last year.

The Network will also work with the neonatal networks to identify opportunities to build CDH education into the wider programme of neonatal education.

2,3,5 01/04/2016 –

31/03/2017 Yes.


Manager

Staff delivering DH services have increased skills and

knowledge.

SDHCN-

2016-03

Ensure the Network is organised to be able to effectively deliver its objectives

through:

- Undertaking a

stakeholder

1,2 01/04/2016 – 31/03/2017

Yes


Manager

Network will have improved outcomes with members of all maternity hospitals being aware of antenatal guidelines and


20

Objective


Dimensions of

Quality

Planned start/ end

dates


/ Owner


31/03/2016

Outcome RAGB status

analysis

- Exploring better

ways of working

with regional

neonatal

networks

- Producing a

revised

communications

strategy

pathways and that all families affected by DH are aware of information leaflets and have involvement in the network so that they can influence service

improvement.

SDHCN-

2016- 04

The network will capture patient/ parent views to inform service improvement

through:

- Undertaking a clinic questionnaire to establish what is

Improvements to service delivery progressed from patient/ parent experience

findings


21

Objective


Dimensions of

Quality

Planned start/ end

dates


/ Owner


31/03/2016

Outcome RAGB status

important to

families

- Attending a CDH UK event to capture feed

back

SDHCN-

2016-05

Service model review- Building on information captured through engagement with families, data collection and review of adverse events, the Network will review the service model to ensure that it is optimal.

2,3,5 01/04/2016 –

31/03/2017 Yes.


Manager

Service model that meets stakeholders

needs.


22

Appendix 1: Network membership

SDHCN MEMBERSHIP April 2015

Aberdeen

Kalous Petr Cons Neonatologist RACH

Patel Yatin Cons Paediatric Surgeon RACH

Edinburgh

Stenson Ben Cons Neonatologist RHSC

Munro Fraser Cons Paediatric Surgeon RHSC

McFadzean Jillian

Cons in Paediatric Anaesthesia and Intensive Care RHSC

Hacking Belinda RHSC

Cooper Sarah Cons Obstetrician RHSC

Urquhart Don RHSC

Cunningham Steve Consultant Respiratory Paediatrician RHSC

Evans Margaret Pathology RHSC

McCabe Amanda Cons Paediatric Surgeon RHSC

Tayside

McCabe Amanda Cons Paediatric Surgeon Ninewells

McCormick Jonathan Consultant Respiratory Paediatrician Ninewells

Leslie Jan Obstetric ultrasound Ninewells

Glasgow

Coutts Jonathan Cons Neonatologist RHSC

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


23

Sub-Groups

Data Collection Inpatient Guidelines

Graham Tydeman (Chair) Fraser Munro (Chair)

Ben Stenson Ben Stenson

Carl Davis Jonathan Coutts

Jan Leslie Jillian McFadzean

Margaret Evans Petr Kalous

Sandra Whitelaw Richard Thompson

Morag Liddell Gregor Walker

Long-term follow up Antenatal Guidelines

Judith Simpson (Chair) Alan Cameron

Amanda McCabe

Don Urquhart Patient Information leaflet

Jonathan McCormick Gregor Walker (Chair)

Morag Liddell Carl Davis

Lyndsey Hunter

Kerry Kasem

Steve Cunningham


24

Appendix 2: Finance

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 2015 – March 2016.

Description Cost £

Hospitality Charges 45

Other Printing & Stationary 224

Hotel Services

Hire of Rooms for Meetings 3163

Travel/Conferences

Total 3432

The majority of the costs in this financial year were for the provision of the education event.

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