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Paediatric and transitional palliative care in Wales. Dr Richard Hain Lead Clinician, Welsh PPM Managed Clinical Network Sugar Implementation Children and Transition Stakeholders’ Conference 29 th September 2009. Paediatric and transitional palliative care in Wales

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Presentation Transcript
slide1

Paediatric and transitional palliative care in Wales

Dr Richard Hain

Lead Clinician, Welsh PPM Managed Clinical Network

Sugar Implementation Children and Transition

Stakeholders’ Conference 29th September 2009

slide2

Paediatric and transitional palliative care in Wales

Foundations, buildings and cement

Dr Richard Hain

Lead Clinician, Welsh PPM Managed Clinical Network

Sugar Implementation Children and Transition

Stakeholders’ Conference 29th September 2009

introduction
Introduction
  • Blueprint: what we are aiming for
  • Foundations: what SIG has already achieved
  • Cement: databases and communication
    • CaNISC
    • DicData
slide4

Child/young person

with LLC & family

Primary care

Community

paed nurses

Oncology

outreach

Other outreach

Special

Schools

Resources

Hospices

Hospital &

community

paeds

Specialist PPC

slide5

Child/young person

with LLC & family

Primary care

Community

paed nurses

Resources

Hospital &

community

paeds

C. 2009

Specialist PPC

slide6

Implementation

of

Sugar Report

Child/young person

with LLC & family

C. 2009

slide7

Implementation

of

Sugar Report

Child/young person

with LLC & family

Hospital &

community

paeds

C. 2009

slide8

Implementation

of

Sugar Report

Child/young person

with LLC & family

Hospital &

community

paeds

C. 2010

slide9

Implementation

of

Sugar Report

Child/young person

with LLC & family

C. 2010

Specialist PPC

slide10

Implementation

of

Sugar Report

Child/young person

with LLC & family

C. 2010

Specialist PPC

introduction1
Introduction
  • Blueprint: what we are aiming for
  • Foundations: what SIG has already achieved
introduction2
Introduction
  • Blueprint: what we are aiming for
  • Foundations: what SIG has already achieved
  • Cement: databases and communication
    • CaNISC
    • DicData
slide13

Royal Glamorgan

Princess of Wales

Nevill Hall

Velindre

Hospital

Y Bwthin Newydd

Holme Tower

Llandough

Royal Gwent Hospital

UHW

slide14

Betsi Cadwaladr

Hywel DDa

Powys

Children’s

Hospital

Ty Gobaith

Ty Hafan

Abertawe

Bro Morgannwg

Aneurin Bevan

Cwm Taf

canisc
CaNISC
  • Links local providers PPC with
    • Tertiary centre at Children’s Hospital
    • Each other
  • Data put in by clinicians in course of clinical record-keeping
  • Can be retrieved by any network centre
  • Over time, provides rich service development resource
canisc1
CaNISC
  • Needs some restructuring to accommodate children
    • Whom do we register ?
    • What data do we collect ?
  • Needs funding
canisc2
CaNISC
  • Needs some restructuring to accommodate children:
    • Whom do we register ? Diagnosis in Dictionary
    • What data do we collect ?
  • Needs funding
canisc3
CaNISC
  • Needs some restructuring to accommodate children:
    • Whom do we register ? Diagnosis in Dictionary
    • What data do we collect ? ACT dataset
  • Needs funding
canisc4
CaNISC
  • Needs some restructuring to accommodate children:
    • Whom do we register ? Diagnosis in Dictionary
    • What data do we collect ? ACT dataset
  • Needs funding SIG has funded first tranche
slide20

Betsi Cadwaladr

Hywel DDa

Powys

Children’s

Hospital

Ty Gobaith

Ty Hafan

Abertawe

Bro Morgannwg

Aneurin Bevan

Cwm Taf

slide21

Betsi Cadwaladr

Hywel DDa

Powys

Children’s

Hospital

Ty Gobaith

Ty Hafan

Abertawe

Bro Morgannwg

Aneurin Bevan

Cwm Taf

canisc5
CaNISC
  • Needs some restructuring to accommodate children:
    • Whom do we register ? Diagnosis in Dictionary
    • What data do we collect ? ACT dataset
  • Needs funding SIG has funded first tranche
canisc6
CaNISC
  • Needs some restructuring to accommodate children:
    • Whom do we register ? Diagnosis in Dictionary
    • What data do we collect ? ACT dataset
  • Needs funding SIG has funded first tranche
  • Does not replace incidence/prevalence/service research
canisc7
CaNISC
  • Needs some restructuring to accommodate children:
    • Whom do we register ? Diagnosis in Dictionary
    • What data do we collect ? ACT dataset
  • Needs funding SIG has funded first tranche
  • Does not replace incidence/prevalence/service research DicData
slide26

CaNISC

2010

2000

2020

slide27

DicData

2010

2000

2020

compared with canisc dicdata
Compared with CaNISC, DicData:
  • Will give some answers more quickly
  • Is more flexible (eg can interrogate other databases)

BUT:

  • Will still take some time
  • Relies on cohort data already gathered
  • Cannot give individual data; just analyses
are we further forward than in april
Are we further forward than in April ?

Yes ! We have funding for:

  • A managed clinical network
  • A better specialist foundation (especially community PPC nurses)
  • A better general paed WSI foundation
  • The prospect of a communication/service development tool in CaNISC