Northwest Children’s Advance Care Planning
Implementation Group
27th January 2015, NWTS Headquarters, Warrington
Minutes
Present
Name
Peter-Marc Fortune (chair)
Lynda Brook (minutes)
Gillian Moreton
Lucy Lees
Fauzia Paize
Liz Finnegan
Jane Hopewell
Lisa Kauffmann
Lis Meates
Rachel Taylor
Lesley Fellows
Becky Male
Diana Jellinek
Gillian Bevin
David Ireland
Anna Oddy
Apologies
Gaby Lipshen
Helen Leahey
Clare Grady Smith
Liz Catterall
Job title and organisation
Paediatric Intensivist Royal Manchester Children’s Hospital
Palliative Care Consultant, Alder Hey Children’s Hospital
Pennine Acute Trust
Pennine Acute Trust
Consultant Neonatologist Liverpool Women’s hospital
Brian House Children’s Hospice
Consultant Paediatrician, Blackpool Victoria Hospital
Consultant in Community Paediatrics and Palliative Care, Greater Manchester
Star Team Greater Manchester
Francis House Children’s Hospice
Hospice to home leader, Claire House Children’s Hospice
Shadowing Lesley Fellows
Consultant Community Paediatrician, Trafford (Pennine Care)
Director of Nursing, Francis House Children’s Hospice
Chief Executive, Francis House Children’s Hospice
Community Nursing Sister, Pennine Care
Consultant Paediatrician, Bolton
Bolton NHS Foundation Trust
Derian House Children’s hospice
Children's Community Nurse, Continuing Care Team, Bolton
Agenda item
Main discussion points
Welcome and
apologies
Minutes of the
previous meeting
Background
As above
Contact
Peter-Marc.Fortune@cmft.nhs.uk
Lynda.Brook@alderhey.nhs.uk
Gillian.Moreton@pat.nhs.uk
Lucy.Lees@pat.nhs.uk
Fauzia.Paise@lwh.nhs.uk
Elizabeth.finnigan@trinityhospice.co.uk
Dr.hopewell@bfwhospitals.nhs.uk
Lisa.Kauffmann@cmft.nhs.uk
Lis.Meates@cmft.nhs.uk
Rachel.Taylor@francishouse.org.uk
lfellows@claire-house.org.uk
Diana.Jellinek@nhs.net
Gill.Bevin@francishouse.org.uk
David.Ireland@francishouse.org.uk
Anna.Oddy@nhs.net
Gabi.Lipshen@boltonft.nhs.uk
Helen.Leahy@boltonft.nhs.uk
clare.gs@derianhouse.co.uk
Liz.Catterall@boltonft.nhs.uk
No minutes available for review

The background to the Unified Advance Care Plan and DNA-CPR Policy was outlined.
Unified Childrens
Advance Care Plan and DNA-CPR Policy briefing Apr 2015.doc
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Initially it was hoped that there would be a dedicated Neonatal Advance Care Plan document to be launched
Actions/ Outcomes
Owner/
timescale
Northwest Children’s Advance Care Planning
Implementation Group
27th January 2015, NWTS Headquarters, Warrington
Agenda item
Main discussion points

Advance Care Plan
document
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at the same time as the updated Collaborative Children and Young People’s Advance Care Plan. However
work has been delayed and a decision was made to proceed with the Children and Young People’s Advance
Care Plan. Locally it was agreed that this could be used for babies and that it would be acceptable to add
the word “baby” to the Advance Care Plan and policy across the Northwest.
Currently there is around 66% adoption in region for the adult policy and DNA-CPR document.
Implementation in other areas covered by the South Central model is up to 99%
The original South Central Children and Young People’s Advance Care Plan and Unified DNA-CPR policy
has been extensively reviewed and updated. This process has taken over 18 months. The latest versions
of the documents were circulated and discussed. It is hoped that these will be the final documents. The
intention is that once these have been ratified they will be implemented across the whole area covered by
the Children and Young Peoples Advance Care Plan Collaborative. Any additional changes will need to wait
until the next revision in 18 months to 2 years’ time (2017).
CYPACP Form Jan
2015 v1.1.pdf
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Advance Care Plan
presentation and
storage
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It was noted that the Alder Hey team had created an interim version of the Advance Care Plan document
from the Collaborative version issued in Autumn 2012 and incorporating the key features of the previous
Alder Hey Emergency Care Plan and LIFE form. These changes have been recognised the by the
Collaborative and provision has been made for extra information held in the Alder Hey plans through two
extra pages (4 sides) to be populated according to local requirements
There was some discussion regarding which particular logos were required locally. The NWAS logo can be
added to the front of the document but Peter-Marc explained that the NWAS Logo is not required as the
NWAS ambulance crews have been briefed about the Advance Care Plans and know to look out for them
It was agreed that the word “baby” could be added to the Northwest Advance Care Plan and supporting
policy document
There was some discussion about electronic versions of the documentation. Uptake for paper versus
electronic versions is variable across the Collaborative footprint. It was recognised that local IT systems
differ. Ideally the same document format would be used either as an editable PDF or Word document with
editing restrictions. However there may still need to be some local variations depending on local IT
provision
The main priority is that the document is instantly recognisable, easy to navigate, un-ambiguous and can be
used by treating clinicians in an emergency situation
The document should be printed out on lilac paper if at all possible. However some centres have struggled
to access suitable paper. The suggested alternative is that the Advance Care Plan is stored in a specific
purple folder in the patient’s home. For adults it is suggested that a “message in a bottle” stored in the
patients’ fridge can give details of where the Advance Care Plan is stored
Actions/ Outcomes
Fauzia to link with
neonatal group
Owner/
timescale
Northwest Children’s Advance Care Planning
Implementation Group
27th January 2015, NWTS Headquarters, Warrington
Agenda item
Main discussion points

Policy
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
Actions/ Outcomes
Owner/
timescale
Ensure all details of
the Northwest
training programme
are on the Website
Encourage people to
share links
Develop outline level
1 training
LB/P-MF
Apr 2015
All the teams and services present at the meeting said that they would be completing the form electronically
and then printing it off for signing and distribution. Therefore there was no call for a local handwritten
booklet
The Collaborative Children and Young People’s policy has also been revised and updated.
It was suggested that when this policy is being implemented within local teams and services some specific
wording should be added to ensure that the Policy is updated when the master document from the Children
and Young People’s Advance Care Planning Collaborative is revised or updated
CYPACP Policy Final
Jan 2015.pdf
Logo
Website
Guidance
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The policy is next due for review in 2017 in line with the Advance Care Planning document
New Children and Young People’s Advance Care Planning collaborative logo was welcomed as an
important unifying visual image and should reduce the need for lots of other logos
The website (www.cypacp.nhs.uk) will be live soon. All key documents will be available on the website
The aim is for the website to develop as a central resource for children’s advance care planning including
copies of key documents, a discussion forum etc
Children and Young People’s Advance Care Planning collaborative has produced leaflets and guidelines to
support Advance Care Planning and local implementation
CYPACP guide Jan CYPACP Parent Info
CYPACP Young
15.pdf
Final Jan 2015.pdf Person Guide Final Jan 2015.pdf
Implementation
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These should be useful to support the Northwest training programme
The aim is to make it easy for organisations to collaborate and implement the Unified Advance Care Plan
and DNA-CPR Policy. As there is no overarching body for approval this will need to be through clinical
governance in each organisation. Hopefully if the Advance Care Plan and policy are adopted by the Tertiary
Paediatric Units within the Northwest this will make it easier for the other organisations to implement the
policy
It is anticipated that each organisation that adopts the Unified Advance Care Plan and DNA-CPR Policy will
implement these as a complete package with no substantive changes to the content or format. However
some minor differences will be inevitable in view of local differences in policy format and the need to put the
host organisation logo on the local Advance Care Plan template
All Apr
2015
LB Apr
2015
Northwest Children’s Advance Care Planning
Implementation Group
27th January 2015, NWTS Headquarters, Warrington
Agenda item
Main discussion points


Local awareness
raising workshops

It was discussed that ideally each organisation or Zonal Network would have a register of Advance Care
Plans for children known to their organisation. This will facilitate updating and ensure that if there are any
changes that need to be made to the Advance Care Plans for patient safety or clinical governance reasons
the Plans can be recalled and amended.
Ultimately it was suggested that there would be a National central electronic database to store this
information
A half day introduction to Advance Care planning outlining what Advance Care Planning I, the opportunity to
review the documentation and an interactive demonstration introducing the concept of Advance Care
Planning to a family aimed at professionals caring for children with life threatening or life limiting conditions
Advance Care
Planning local awareness raising.docx
Training programme
Funding
Implementation
updates
Greater Manchester (Lisa Kauffmann)
 Workshops have already been held in Pennine Acute, Salford and Oldham
 Further workshops are planned
Merseyside and Cheshire (Lynda Brook)
 Workshops are in the early stages of planning at Warrington, Arrowe Park, Chester and Leighton
Lancashire and South Cumbria (Lynda Brook/ Jane Houghton temporary chairs)
 Workshops are likely to be set up once the Network is re-established
 Level 2 training courses will be on 24th March and 20th October at the ManCEL centre. Uptake is likely to
increase following Awareness-Raising workshops
 The Advance Life Support group will attend one of these courses to assess the programme with a view to
adopting it as part of their portfolio
 It is hoped that the level 3 training programme will be set up this year
 Organisations adopting the Unified Advance Care Plan and DNA-CPR policy will need to contribute around
£100 per year to pay for maintenance of the website. Alternatively this might be better funded on a Network
basis
 There was also discussion of an Advance Care Plan co-ordinator role. This has been essential for
implementation elsewhere in the UK and some areas have made funding for this type of role an essential
requirement for implementation. At Alder Hey this role has been taken on by the Palliative Care Team Coordinator but this is not formally commissioned or funded.
 The aim is to identify an Advance Care Planning Lead for each organisation across the Northwest. These
contact details will also be put on the website. Organisations present at the meeting fed back regarding their
local implementation
o Claire House commented on the new Advance Care Plan format. The aim is to get the policy
Actions/ Outcomes
Owner/
timescale
Northwest Children’s Advance Care Planning
Implementation Group
27th January 2015, NWTS Headquarters, Warrington
Agenda item
Main discussion points
through the hospice Clinical Governance committee
Pennine Acute are already using the previously circulated Advance Care Plan document. The policy
is currently going through Clinical Governance. There is a lot of local interest from doctors and
nurses
o Liverpool Women’s Hospital is yet to formally review the documentation. Fauzia will take it back to
the team for discussion
o Blackpool have a similar Advance Care Plan in use and don’t anticipate major problems adopting
the new format. The aim will be to take this to the management team within the hospice and then to
the hospital
o Francis House expressed anxiety about clinical governance. As the hospice has a young person’s
unit there may be a need to adapt the Advance Care Plan for the older age group or adopt the Adult
and Children’s documents simultaneously
o The Star team are using the previously circulated Advance Care Plan document and it is working
well. The challenge will be level 1 training. Trafford will get together with Pennine for this.
It was suggested that the next meeting should include more detailed discussion of level 1 training
Friday 24th April, 10:00 – 12:00 NWTS, Birchwood, Warrington
o
Any other business
Date and time of
next meeting
Actions/ Outcomes
Owner/
timescale