Supportive Care Legacy Document
June Toovey – March 2013
Introduction
This Legacy document will provide information on the work that has been undertaken by the YCN that
may be useful to support and inform the work of the SCN in the areas of Supportive care and the ongoing implementation of the NICE Improving Supportive and Palliative Care for Adults with Cancer
Guidance.
Supportive Care
Network Supportive Care Audit
A network work Supportive care audit has been agreed this is being used by MDTs as part of the peer
review internal validation cycle to demonstrate that supportive care is being delivered by the team.
The elements included in the audit are, Keyworker, Holistic Needs Assessment, notification of GP,
offering permanent record of consultation and offering patient information. (See link below)
SP Peer Review
Audit Tool - FINAL2011.doc
Trust and NSSG information about supportive care
The YCN produced supportive care reports in 2011 for the NSSGs and Acute Trusts which included
information from the CNS Census, Supportive care audits and results from the national cancer patient
survey. (See link below for the Acute Trust Report) NSSG reports are available via the YCN i Drive
contact philip.melling@nhs.net
DoH Ca Pt Survey
2010 YCN Trusts Feb 2011.pdf
Communication Skills
The YCN has coordinated the ‘Connected’ Advanced Communication Skills Training programme.
Over 800 professionals have been trained as part of the process.
10 facilitators have received accreditation with 8 continuing to deliver programmes.
Current facilitators delivering programmes and contact details are as follows:
Belinda Archer – Belinda.archer@leedsth.nhs.uk
Dr Jane Clark – jane.clark@leedsth.nhs.uk
Amanda Henderson – amanda.henderson@leedsth.nhs.uk
Helen Mullan – helen.mullan@leedsth.nhs.uk
Dr Uschi Hofmann – uschi.hofmann@cht.nhs.uk
Miranda Lane – Miranda.lane@bthft.nhs.uk
Dr Rob Lane – r.lane@leeds.ac.uk
Dr Emma Thomas – emma.thomas@leedsth.nhs.uk
Other accredited facilitators are
David Streatfield – d.g.streatfield@bradford.ac.uk
Nina Watson –nina.watson@me.com
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A sustainability plan for the programme has been agreed across the network (see work link below)
Advanced
Communication Skills Training sustainability April 2012.doc
Network reserve funding has been identified to enable the programme to continue in the interim with
Leeds Teaching Hospitals Trust identified to coordinate the programmes for across the network area.
Contact Krystina Kozlowska - Krystina.kozlowska@leedsth.nhs.uk for further information.
The Acute Trust Lead Cancer Nurses have led the ACST programme coordination of participants for
their localities.
Psychological care
The YCN have an active group of psycho oncologists from across the Network.
Contact - Sarah Catesby Consultant Clinical Psychologist Leeds Teaching Hospitals Trust
Sarah.Catesby@leedsth.nhs.uk
A network wide level 2 education programme has been developed and delivered for the last 3 years.
Information about the programme and the associated competency portfolio are available on the YCN
website:
http://www.ycn.nhs.uk/html/downloads/ycn-psychologygroup-level2trainingprogramme-summary.pdf
http://www.ycn.nhs.uk/html/downloads/ycn-psychologygroup-level2trainingprogramme-portfolio.pdf
Network reserve funding has been identified to support the on-going delivery of the above programme
in the interim period with Leeds Teaching Hospitals Trust identified to coordinate the programmes
across the network area. Contact Krystina Kozlowska - Krystina.kozlowska@leedsth.nhs.uk and
Sarah Catesby - Sarah.Catesby@leedsth.nhs.uk for further information.
A level 3 and 4 induction programme has been agreed (available on the YCN website) and is ready
for implementation across the network:
http://www.ycn.nhs.uk/html/downloads/ycn-psychologysupportlevel3and4inductionprogrammerecommendations-aug2012.pdf
A service specification for psychological care in cancer which incorporates the need for psycho sexual
care has been agreed and is available on the YCN website:
http://www.ycn.nhs.uk/html/downloads/ycn-psychologysupport-servicespecificationrecommendationsaug2012.pdf
The group have supported the development of the Managing the Stress of Cancer booklet and
relaxation CD. An electronic version of the booklet is available on the YCN website:
http://www.ycn.nhs.uk/html/downloads/ycn-patientinformation-managingthestressofcancerapr2012.pdf
The most recent mapping of level 2, 3 and 4 psychological care is included in the YCN psychology
group annual report for 2012:
http://www.ycn.nhs.uk/html/downloads/ycn-psychologygroup-annualreport2011-12.pdf
Psychosexual care
A series of workshops have been planned/delivered to support the delivery of psychosexual care. The
contact for future programmes if required is Sue Lennon - sue.lennon@btinternet.com.
Rehabilitation
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Specialist Allied Health Professionals have worked in collaboration with Clinical Nurse Specialists in
the Site specific specialist groups to support the work of the Network Site Specific Groups and Clinical
pathways.
Extensive work has been undertaken in parallel with national work on the development and
agreement of Rehabilitation pathways. National Pathways are expected in the next few months which
is anticipated could be adopted.
Recommendations for triggers to identify rehabilitation need and referral to rehabilitation services
have been developed to support the Holistic Needs Assessment. This will be available for local
adaptation and implementation.
Contact Nicky Byrne Macmillan Therapist and Team Leader Calderdale and Huddersfield Foundation
Trust - Nicola.Byrne@cht.nhs.uk
Complimentary Therapy
The network has an agreed complementary therapy criteria (available on the YCN Website), which is
used by cancer services across the network:
http://www.ycn.nhs.uk/html/downloads/ycn-supportive-complementarytherapycriteria-2012-14.pdf
The network has worked with Breast Cancer Haven based in Leeds to ensure all their complementary
therapists meet the YCN criteria thus enabling information regarding the Haven to be given to cancer
patients across the network Contacts for the Breast Cancer Haven are:
Caroline Hoffman - caroline.hoffman@thehaven.org.uk
Debra Horsman - debra.horsman@thehaven.org.uk
Holistic Needs Assessment
Agreement has been reached to use the Distress Thermometer as the Holistic Needs assessment
tool across the network. (Versions for use by the different Trusts across the network are available on
the YCN website): http://www.ycn.nhs.uk/html/publications/distressthermometer.php
The DT has been adapted by some cancer sites with additional aspects included (versions are
available on the YCN Website) http://www.ycn.nhs.uk/html/publications/distressthermometer.php.
A licence for using the DT across the network has been gained from the USA National
Comprehensive Cancer Network. This is valid until June 2013(see pdf file link below). Contact for
future licence renewal is: Nicole Fair - Fair@nccn.org
Toovey 61312
Distress.pdf
Guidelines for using the DT have been agreed and are available on the YCN website:
http://www.ycn.nhs.uk/html/downloads/ycn-distressthermometer-guidelines-2011.pdf
Guidelines for Holistic Needs Assessment across the network are available on the YCN website:
http://www.ycn.nhs.uk/html/downloads/ycn-holisticassessmentguidelines-2011-13.pdf
The Distress Thermometer tool implementation has been supported by the network Psychology group
and psychologists in localities across the network.
Local implementation is being led by the Trust Lead Cancer Nurses (see cancer nursing legacy
document for contact details).
The Holistic needs assessment is included in the network supportive care audit.
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Key Worker Role
The recommendations for the key worker role have been agreed across the network and are available
on the YCN Website:
http://www.ycn.nhs.uk/html/downloads/ycn_competenciesforkeyworkerrole2012-14.pdf.
The identification of the keyworker role was included as part of the network supportive care audit.
Patient Information
A large number of patient information materials have been developed for use across the network. The
first print run of resources was funded (expected to last 2 years) with electronic versions of the leaflets
available on the YCN website: http://www.ycn.nhs.uk/html/publications/information.php.
The booklets and leaflets are currently copy righted to the YCN. To maintain the consistency of the
content of the information developed f or use across the network it is suggested that any changes to
content need to be agreed by the relevant YCN Group. This may be the network Site Specific Group,
Cross Cutting Group or Lead Nurses Group and can be achieved through contact with the chair of the
group. The letter attached below provides permission to reproduce the information using the Trust
logo to replace the YCN logo.
Letter re information
materials copy right.dot
In the last 2 two years the original (editable) artwork has been created in Quark Xpress and is held by
Graphic Designer Yvonne Finn. Yvonne would be available to support the updating of any leaflets she
holds and charges an hourly fee for doing that work once these have been agreed by the relevant
group. Contact details for Yvonne are yfinn.design@yahoo.com.
In the last 2 years the YCN booklets developed have been printed by Dalesgate Press Ltd (contact
sales@dalesgatepress.entadsl.com)
Previous to this the Graphic work and printing was undertaken by Medical Illustration in Leeds
Teaching Hospitals Trust contact Jane Garrud Senior Medical Illustrator jane.garrud@leedsth.nhs.uk.
Information pathways for each cancer site were agreed with regular updating being undertaken by the
network site specific nursing groups. The pathways are available on the YCN website
http://www.ycn.nhs.uk/html/pathways/informationpathways.htm.
Information prescription pilots have been undertaken in 5 of the acute trusts across the network with a
paper based prescription being developed and tested for the majority of the cancer sites. For further
information contact Jane Archer Jane.Archer@york.nhs.uk.
See below the Information Prescriptions programme report:
Information
prescriptions Programme report Dec 2012.doc
See below examples of information prescriptions used during the pilots:
YCN_leeds_informati ycn-YORK-headandn FINAL IP Colorectal ycn-breast-patientinf Generic info pathway
on_prescription_late_effects_adults_May2012_v1.0.doc
eck-infoprescription-feb12.pdf
YORK PILOT August 2012.doc
opilot-leeds-july2012_1.doc
- V4 May 2012.doc
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An information resource file and cd rom is being developed to support the psychological aspects of
the Holistic needs assessment. For further information contact Jane Archer
Jane.Archer@york.nhs.uk.
It has been agreed that the Local Patient Information Centre Managers and Lead Cancer Nurses will
be responsible for on-going work.
Contact for further information Jane Archer Patient information manager York Teaching Hospitals
Foundation Trust - Jane.Archer@york.nhs.uk.
User Involvement
The network has had a WTE User Involvement Facilitator Colin Sloane – colin.sloane@ycn.nhs.uk.
Colin will be going through to the SCN in the role of User Facilitator and will be able to provide all
information required re work achieved for User Involvement, which includes the development of User
Involvement Guidelines and a User Involvement Strategy.
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The development of role descriptions for service users representing on Network groups and
committees.
The development of service specification for Patient Centred Care, Supportive Care and
Transitional and Self-Managed Care.
The development of user involvement guidelines:
user involvement
guidelines
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Role derscription
service user
service specification
patient centred care, supportive care and transitional self managed care
The development and maintenance of an active network User partnership group (UPG),
supported by an executive group and training and education for service users and health
professional.
A data base of service users will to be involved in different aspects of service user
involvement.
UPG members having active engagement in the development of network wide patient
information resources both in the production e.g. managing the stress of cancer and the
relaxation CD to support the booklet and the editing as part of the editorial panel.
Snap Questionnaire
Snap
Lung Project 2012.pdf Questionnaire.pdf
UPG member’s involvement in service and pathway development across the network
Members of the UPG are active members of Network Groups including NSSGs Nurses and
specialist groups and cross cutting groups e.g. chemotherapy, supportive care and
psychology.
UPG group initiating and supporting projects to improve supportive care for patients e.g. the
moving on project.(see project report below)
Moving - On Project
Report 2010.pdf
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The development of site specific patient experience surveys (based on a shortened version of
the National cancer patient survey) in Skin, Lung and chemotherapy.
Collating and feeding back results from network and national patient surveys to network
groups and localities across the network.
The development of a legacy document reflecting on ten years of user involvement in the
cancer network.
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YCN UPG Legacy
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Initiating an Equality and Diversity Project looking at the needs of people from Black and
Minority Ethnic backgrounds and people with Learning Disabilities:
ycn-inequalities-blackycn-inequalities-learnycn-inequalities-learn
andminorityethniccommunities-finalreport-dec2012.pdf
ingdisability-fullfinalreport-dec2012.pdf
ingdisability-easyread-finalreport-dec2012.pdf
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Further pieces of work and useful resources can be found on the Network website by
following this link http://www.ycn.nhs.uk/html/groups/user/index.htm.
Colin Sloane will be moving into the Strategic Clinical Network as the Patient and Public
Engagement Facilitator and can be contacted at colinsloane@nhs.net.
Survivorship
The network, with funding from Macmillan Cancer Support, had a survivorship programme manager
post. The post holder Lorraine Cooper – Lorraine.cooper@nhs.net will be going through to the SCN
and will be able to provide clarity as required.
The post supported the development of and sharing of good practice for survivorship across the
network.
A series of newsletters were developed to help share good practice across the network (see pdf link
below):
ycn-survivorshipnew
sletter03-aug2012.pdf
Survivorship
Development Plan - 1 Year on.pdf
The end of year report above provides further information.
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