Women who become seriously ill in pregnancy; families of babies cared for in a neonatal unit; and women whose babies die in the second trimester often fall between the cracks of NHS services, due to the way services and pathways are set up. They become ‘Nobody’s Patient.’
April’s Edge Talk will give participants the opportunity to hear about the Nobody’s Patient project, which was sponsored by the NHS England Maternity Challenge Fund to improve care and experience for families who are typically seldom heard. The talk will describe why the project – part of the #MatExp social movement – was created. It will also detail how families and multidisciplinary staff came together during two pilot workshops at Kingston Hospital NHS Foundation Trust, and at St George’s Hospital NHS Foundation Trust to co-produce solutions to improve the care and experience for other families, and for the staff who care for them. Because nobody should feel like they are nobody’s patient.
This Edge Talk will be of interest not only to those involved in maternity services, but will also appeal to anyone working in engagement and coproduction, especially with groups who are typically labelled ‘seldom heard’, or ‘hard to reach’.
Edgetalks April 2017: Nobody's Patient: Improving Care and Experience in Maternity Services chat
1. Edge Talk: Nobody’s patient chat
fromKathrynPererato All Participants:
Hi everyone!Reallylookingforwardtothissessiontoday.
from@domcushnantwittermonitortoAll Participants:
Yeah me too.So veryimportantthatas a societywe getMaternity rightat everylevel,medicallyand
emotionally.
fromPaul WoodleytoAll Participants:
on manylevels
fromPaul WoodleytoAll Participants:
I can onlyhear youa bit,your connectionterrible!Doyouwantto dial in?
fromGill PhillipstoAll Participants:
Exciting!We have justhad a little runthroughourslidesandare goodto go! #MatExp #WhoseShose
#NobodysPatient#Edgetalks
from@domcushnantwittermonitortoAll Participants:
Brilliantlookingforwardtohearingyourreflections.
from@domcushnan twittermonitortoAll Participants:
The case studiesinthe reportthat Leighsharedwithme are encouraging
fromJanetto All Participants:
Hi all!Goodmorning.
from@domcushnantwittermonitortoAll Participants:
Good morning.Iam in Walsall today
fromCatherine MacLennanto All Participants:
Morningall I'm in Birmingham
fromPaul WoodleytoAll Participants:
Morningall from Coventry
from@domcushnantwittermonitortoAll Participants:
:)
fromGill PhillipstoAll Participants:
2. 2 minutestogo.Not quite enoughtime towatchFlo'sfab'round up' filmof #MatExp
#NobodyPatient:https://animoto.com/play/TVQpiZqWHBl5GEagz14RHg#EdgeTalks
https://animoto.com/play/TVQpiZqWHBl5GEagz14RHg
fromJanetto All Participants:
So muchis written aboutpoorexperiences - thisisgreatto hearwhat isworking.
from@domcushnantwittermonitortoAll Participants:
thankyou forbeingso vulnerable andsharing
fromJanetto All Participants:
Creatingthe conditionsforchange canbe fun - we can all learnfromthis.
fromKathrynPererato All Participants:
Reallyclear,compellingexplanationof thiswork.
fromTony Longbone toAll Panelists:
morningall,sorryI'm late
fromJanetto All Participants:
Great that youcouldjoinus Tony!
fromVictoriaMorgan to All Participants:
Hi,I'm Victoria,I provide qualityimprovementtrainingtomaternityservices. Sorryforjoiningabit
late.
fromTony Longbone toAll Participants:
morningVictoria,thanksforjoiningus ☺
fromKate DaviestoAll Participants:
UnfortunatelyIhave torun to a meetingat10, but justwantedtosay it's beenaprivilege tohear
Leighand Catherine share theirexperiencesandgreattohear aboutsuch a fantasticproject.
fromDeirdre Munro to All Participants:
Hi my name isDeirdre Munro,global village midwife - passionate andbiggestfanof matexp
fromDeirdre Munro to All Participants:
Gill LeighandCatherine youare amazingI wantto thank youso much forall you so,it meansso
much
fromDeirdre Munro to All Participants:
3. do
fromVictoriaMorgan to All Participants:
Anyone listeningtoLeighandCatherine todaycansee that listeningtoparentswhohave
experiencedbereavementisessentialif we are toimprove qualityinmaternityservices. Leighand
Catherine alsodemonstratethattheycancollaborate constructivelywithhealthcare staff. So
pleasedNobody'sPatienthasdemonstratedthis. We needthe NHSmaternitysurveyand
investigationprocesstocatchup! Victoria:-)
from@domcushnantwittermonitortoAll Participants:
thanksVictoria.Whatdo yousee as the barrierfor the investigationprocessfornotlistening?
fromKathrynPererato All Participants:
It strikesme thatthisis alsoa 'flow'issue - and that mightbe anotherwayof translatingthe
campaignsintothe system
fromKathrynPererato All Participants:
i.e.Gapsin provisionof care are alsogapsin understandingof care pathways
fromVictoriaMorgan to All Participants:
ThanksDom. I thinkfearis an issue - thatparentsmightnot be constructive orit istoo emotional
for them. Staff alsoneedthe tools(toengage parentswell) andtomanage theiremotionsaswell as
leadershipnationallytoencourage themtodothis(the NHSmaternityservicessurvey,F&Ftest
exclude bereavedparentssadly).
fromKathrynPererato All Participants:
Q: What is (should?) these campaignsbe doingtocollectthe quantitativedataongaps inprovision?
fromKathrynPererato All Participants:
PerhapscollaboratingwithaTrustimprovementteamtodo a small-scale PDSA cycle asaway of
gatheringdataon provisiongaps.
fromVictoriaMorgan to All Participants:
Hi Kathryn,improvementscience iscertainlyagoodwayof objectivelyselectingandareato change
and planningatestof change. Involvingparentsinthiswouldbe key. Victoria
fromVictoriaMorgan to All Participants:
The material isreallyamazing - havingcrowdsourcedmaterialsmake itreal. I alsolove thatthey
recognise the perspectivesof parents,staff andcommissioners.
fromVictoriaMorgan to All Participants:
So true Gill,the differentviewsare sucha powerful elementof the work.
4. fromJanetto All Participants:
We can learnfromsmall intense groupengagementtogetto the heart of issues.
fromVictoriaMorgan to All Participants:
"Gettingprofessionals,fromdifferentspecialities,inthe roomandgetthemtalkingabouthow to
improve care - oftenquite simple things - wasincrediblypowerful." Love this!
fromCatherine MacLennanto All Participants:
Thank youDeirdre
fromKathrynPererato All Participants:
Beautiful slides.
fromTony Longbone toAll Participants:
powerful sessionthatall HCPscan learnfrom
fromTony Longbone toAll Participants:
tellingmystoryonlyonce,suchan importantfactorin myspecialtyandsomethingwe needtogetto
gripswith
fromCatherine MacLennanto All Participants:
so true Tony,can be traumaticrelivingexperiencestime andtime againwithdifferentHCP'sgotto
be a betterwayto dothis
fromTony Longbone toAll Participants:
agreedCatherine
fromKathrynPererato All Participants:
Reallypowerful,thankyouforsharingyourknowledgeandexperiences
fromGill PhillipstoAll Participants:
"Powerful sessionthatall HCPscanlearnfrom" - thank youTony. Yes, ourkeymessagesgoway
beyondmaternityservices - te themesare similaratall Whose Shoesworkshops.We are all people -
we all want to have a voice,choice,goodinformation,compassionandtofeel supportedwithour
individualneedsandaspirations.
fromVictoriaMorgan to All Participants:
Hi Catherine/Tony - Ilovedthe Nobody'sPatientcase studyfromKingstonewheretheyhave afree
textbox on the maternitybookingformsomumscan putdownwhat theywantHCPs to know
fromTony Longbone toAll Participants:
5. so important,we have asimilartool whichcan findoutso muchbut isn'tbeingusedtoit's full
potential.IthinkMH serviceshave alotto learnaboutknowingthe person.
fromGill PhillipstoAll Participants:
Yes the Nobody'sPatient case studyfromKingstonwheretheyhave afree textbox hasmade a big
impact- starts conversationsfromaverydifferentplace,takingintoaccountwhatmattersto
individuals
fromVictoriaMorgan to All Participants:
ThanksTony & Gill
fromVictoriaMorgan to All Participants:
Veryimportantpoint - needfora supportnetworkaroundparentswhoare sharingverydifficult
timesof theirlives.
fromJanetto All Participants:
Policymakerswhouse hardto reach and seldomheardare notlisteningtothese importantstories
and social movementapproachestochanginghealthandcare.
fromVictoriaMorgan to All Participants:
So agree,Janet
fromKathrynPererato All Participants:
Thanksfor thissession.
fromJanetto All Panelists:
Thank youfor sucha powerful sessionandyourcall toaction.
fromTony Longbone toAll Participants:
thanksall great session,yourdoingbrilliantwork
fromVictoriaMorgan to All Participants:
Thank youfor organisinganamazingsession - particularlyCatherineandLeighfor sharingyour
stories.
fromJo HemmingtoAll Participants:
Thank youfor sharingyourstoriesandfor a great session
from@domcushnantwittermonitortoAll Participants:
thankyou verymuchas alwaysforyourpassionandwork
fromDeirdre Munro to All Participants:
6. thankyou everyone - fabulousedge talk
fromDeirdre Munro to All Participants:
veryemotional session