Living With and Beyond Cancer
Implementing the personalised care agenda – new roles in the cancer workforce
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Session structure
1. Introduction (Lindsey Wilby)
2. Setting up a Cancer Care Coordinator-led HNA clinic (Jess Blandford)
3. The challenge of full implementation, and outcomes in practice (Mike Clinton)
4. Community provision of HNA (Suzanne Holt)
5. The patient’s perspective on eHNA (Patrick Fahy)
5. Q&A
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The NHS Long Term Plan: Personalised Care for Cancer Patients
3.64. By 2021, where appropriate every person diagnosed with cancer will
have access to personalised care, including needs assessment, a care plan and
health and wellbeing information and support.
This will be delivered in line with the NHS Comprehensive Model for
Personalised Care. This will empower people to manage their care and the
impact of their cancer, and maximise the potential of digital and community-
based support.
Over the next three years every patient with cancer will get a full assessment
of their needs, an individual care plan and information and support for their
wider health and wellbeing.
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• A holistic needs assessment (HNA) is a high-quality patient-led conversation which allows a person to identify concerns following a diagnosis of cancer, through treatment and beyond. The concerns may include emotional, physical, spiritual or practical issues.
• It can be completed on paper or electronically. Ideally it should be a self assessment, but some individuals may need support either from a heath or social care professional (H&SCP), friend or relative.
• Previously referred to under the umbrella term The Recovery Package, so you might hear reference to that.
• A HNA can provide the H&SCP with insight into patients enabling them to signpost to services that will support the patient to address their concerns.
• Where concerns are raised, a care and support plan should then be co-created between the H&SCP and
person with cancer. The care plan should identify patient priorities, and record specific actions that the person or the H&SCP will take to address the issues or concerns raised during the HNA. This may include self management techniques or referring on to other local support services.
• The care plan is held by the patient and can be shared with their GP or other H&SCPs (with consent).
Holistic Needs Assessment (HNA) and Care Planning: what is it?
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Greater Manchester Cancer
How? • Paper • Electronic – preferred (for saving, sharing, evidencing) Where? • Secondary Care/Clinic • Community/Home Who? • CNS, AHP • Cancer Support Worker/Cancer Care Co-ordinator • Macmillan Cancer Information Centre
When? At any point in the patient pathway, but we stipulate at a minimum: • Around the time of diagnosis • At the end of treatment
Holistic Needs Assessment – How, Where, Who, When?
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Progress: HNA implementation • Workforce (overstretched, esp. CNSs)
• RP Project Managers (Macmillan funded) in post in 8 out of 9 Trusts
• Cancer Support Workers already in some Trusts
• Community-based provision in some localities
• Funding (unlike other Cancer Alliances)
• Governance
• Implementation group (support, consultation, action and consistency)
• Steering group (leadership and direction)
• Working with others
• Working in partnership with Macmillan (resourcing of teams; support for eHNA training; eHNA data sharing)
• Shared learning and networking with regional and national teams
• User involvement
• PABC on steering group, implementation group, involved at Trust level, and at all LWBC events
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Progress: HNA data (GM including East Cheshire)
Quarter Diagnoses HNAs completed
Percentage (proxy)
(Previous quarter: Apr-Jun 2018)
(5191) (1305) (25)
July-Sept 2018 5351 2197 41
Oct-Dec 2018 5125 2665 52
Jan-Mar 2019 5321 2523 47
Apr-Jun 2019 6016 2717 45
TOTAL 21813 10102 46%
HNA Clinic
Cancer Care Coordinator
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The Team at Stockport
Macmillan Recovery Package project team:
Implementation Lead – Jess Blandford
Service User Involvement – Wendy Chapman
Cancer Care Coordinator – Carly Cooke (Urology)
Further Funding from Macmillan and GM transformation funds provided:
Senior Cancer Care Coordinator - Rachel Thurlow
Cancer Care Coordinators
• Sherine Simpson (Lung )
• Michelle Rowe (Haematology and Chemotherapy)
• Gwynneth Wilbourne (HPB and Upper GI)
• Louise Dorman (H&N and Gynae)
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Vision
‘For all cancer patients at Stockport NHS Foundation
Trust to be empowered to live their best lives’
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Mission
‘To engage, encourage, and educate patients; to equip them with the knowledge,
skills and support to effectively manage their lives
with cancer’
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Urology CCC HNA clinic - Set up
• Knowledge and skills training for CCC o eHNA training o Understanding the RP o Cancer Awareness o Consequences of treatment o Sage and Thyme o Motivational Interviewing o Shadowing o Mentor
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CCC HNA clinic - Set up
• Competency framework agreed with CNSs • Pathway mapping exercise to establish timing and referral
system • Collaboration with Beechwood to provide relaxed clinic space • IT resources – with remote access • PAS clinic slots • Pilot clinic at Beechwood • Second clinic at Trust to meet demand • Evaluation using patient experience survey coproduced with
service users
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Data
0
10
20
30
40
50
60
70
80
90
Q1 Q2 Q3
eHNA offered Care plans completed
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‘… encouraged by a sense of purpose that our meeting engendered I insisted on a consultation… whatever the outcome, thanks for giving me a push’
Patient Feedback
CNS Feedback
‘this clinic allows me to do my job fully. I can take time to talk to patients about their cancer knowing the holistic issues will be picked up by the CCC … patients open up more to the CCC because that is what the HNA appointment is all about … patients are getting a better service’
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Evaluation Survey
• The HNA is provided at the right time (approximately three weeks after diagnosis)
• Patients felt they were listened to, their concerns were understood and they received appropriate information
• Anxiety was reduced following the HNA by around 28%
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Anxiety
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68
70
72
74
76
78
80
82
con
fid
en
cce
Before HNA After HNA
Confidence to manage
What’s Next?
• Additional clinic at Blythe House Hospice • Embedding CCC role to deliver HNAs in other
tumour groups • Data analysis around value and time saved for
CNSs • Working with business managers to make the
new role sustainable
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The challenge of full
implementation, and
outcomes in practice
Macmillan Staff Nurse
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80,000 Locally 2010 Nationally 1.8 million
155,700 Locally 2030 Nationally 4 million
Increase of 75,700 patients LWBC locally
Public Health England’s local cancer intelligence tool indicates that for Greater Manchester and
East Cheshire the prevalence of those LWBC for up to 20 years after diagnosis is expected to
increase
Local Data
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“encourage nurses to acquire new skills and to embrace innovative ways
of managing cancer as a long-term condition
There could not be a more
appropriate time for nurses to take a greater role in driving this change”
(Macmillan UKON RCN 2014)
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Nursing by numbers
• 2016 there were 220,000 adult nurses in post • Trusts have increased posts by approximately 10% (30,000) in response to National
Quality Board guidance (2013). • 2012 - 2016 the NHS in England created 36,817 FTE new adult nursing posts only able to increase headcount by 11,814 FTE (5.7%)
• 6,000 nurses have been coded to Oncology • 3,088 WTE specialist cancer nursing posts (124 vacant) Macmillan census (2014) • Specialist cancer nurses who are over 50 years old has risen from 33% to 37%
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Not Active 40%
Active 60%
Percentage of CNS actively using HNA at 5 GM trusts
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Barriers to eHNA Implementation • Cultural resistance (Perception that CNS already undertake HNA via meaningful
conversations)
• IT skills and connectivity to systems Wi-Fi
• Lack of designated clinic time and space
• Unfamiliarity of NHS Long Term Plan and need to change clinical practice to meet system
reform
• Insufficient support administrative tasks
• Financial Tariff related to the implementation of eHNA, Health and Well-being clinic
events?
• IPAD Laptop access or use- use of paper tool resulting in minimal or no Care Plan
provided
• Complex Patient Pathways
• Concerns Checklist not appropriate
Developing the Cancer Workforce
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Phase 1: Delivering the cancer strategy to 2021
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There should be clear and supported
professional development pathways for a
nurse to become a cancer CNS.
Health Education England, NHS England,
Integrated Care Systems and Cancer
Alliances should work together to support
this at local level.
Succession Planning
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Macmillan Staff Nurse - Role • Implement the key elements of the recovery package under the supervision of the specialist
nurse
• Support people to access appropriate information and support, by sign-posting to a range
• of support services
• Take an approach which helps people to self manage where appropriate
• Deliver patient-centred, self-management support and education as necessary to noncomplex
• patients, including how to self-assess
• Support the delivery of patient and carer training and education
• Encourage and support active and healthy lifestyle choices
• Coach patients and carers to understand what signs, symptoms or situations to be aware
• of that would indicate concern
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Macmillan Staff Nurse L&D Local training at SRFT • Systems Training • eHNA Training Session • Psychology Clinical Supervision • End of Life Care – Intermediate • Sage and Thyme Communication Training • Enhanced Communication Skills • Oral Health Workshop • Advanced Care Planning & Communication
Skills • Oral Health Workshop • Psychology Level 2 Training • Chemotherapy Study Day • Mental Health First Aid Course
GM Regional Training/ Macmillan Training • CAN Move • Recovery Package L&D Networking Event • Macmillan National Conference • Macmillan E-HNA Training • Macmillan Cancer and Dementia Training • Macmillan Motivational interviewing 2 day • Macmillan Emotional Wellbeing • Care of Dying Adults in the Last Days of Life • GM Acute Oncology Nurse’s Forum • GM Fitter for Cancer Treatment Fitter for Life • GM LWBC My Patient has Cancer – How Can I Support Them? • GM Pathway Board Meeting/ Training Event • GMC Head and Neck Symposium • Macmillan grief, Loss and Bereavement Study Day • GM Cancer Conference 2018/19 • MSc Modules
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0
50
100
150
200
250
300
Initial Diagnosis Start of Treatment During Treatment End of Treatment Recurrence Follow Up Transfer to Palliative Palliative Care
297
25
143
43
27
264
19
6
248
41
74 73
6
211
10 8
Nu
mb
er
of
Pat
ien
ts
Comparison of eHNA by Pathway Stage
MSN % CNS & AHP %
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0
100
200
300
400
500
600
700
800
900
Status Expired Declined Concent Declined Not appropriate Pending Submitted In Progress Locked
824
137 114
3 3
150
18 36
362
671
140
86
5 0 30 25 34
357
Nu
mb
er
of
Pat
ien
ts
Comparison of MSN and CNS & AHP data for eHNA
MSN % CNS & AHP %
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207 203
152
143
127 120
114 112 109
97 96
85 85 81 80 79
75
0
50
100
150
200
250
No
. of
Pat
ien
ts
Concern
Top 17 patient concerns raised in eHNA n = 1439 (3468)
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Macmillan Staff Nurse Outcomes
• Implementing the key elements of the recovery package influencing the specialist nurse and
other staff in the department.
• Support people to access appropriate information and support, by sign-posting to a range of
support
• Increasing contact with patients at an early stage from diagnosis or start of treatment
• Increasing uptake of eHNA at follow ups and long term
• Increased the use of eHNA which helps people to self manage where appropriate
• Supporting the delivery of and follow up of eHNA from Health and Well being
• Supporting the delivery of patient and carer training and education through eHNA and HWB
• Coach patients and carers to understand the eHNA is a way of communicating concerns to
staff
• Increasing referral to support across GM including active and healthy lifestyle services
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Macmillan Staff Nurse the Future • Implement the key elements of the recovery package under the supervision of the specialist
nurse by embedding these roles into services
• Identify funding and tariffs to maintain the Macmillan Staff Nurse role and continue their
development
• Support Band 5 Staff Nurses within the existing trusts to think about this model of progression
to develop skills and provide an in house pathway for succession of the CNS workforce of the
future
• Continue to take an approach which helps people to self manage where appropriate
• Continue to deliver patient-centred, self-management support and education
• Support and continue to educate the existing workforce to see the long term benefits of
personalised care and support planning
• Encourage and support CNS’s to use eHNA as a patient led tool to identify un-met needs
Community Provision
Oldham Macmillan 1:1
Support Service
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Oldham Macmillan 1-1 Support Service
The Oldham 1-1 Support Service was 1 of 16 UK wide services launched in April 2013 as part of a
2 year pilot scheme, and were the only service to be commissioned in 2016.
The aim was to develop a community model of personalised care based on The Macmillan
Recovery Package.
Initially a face to face appointment is conducted to identify any issues and concerns
An individualised plan of care is produced in agreement with the patient and referrals on to
appropriate support services made as dictated and agreed with patient consent.
Ongoing support is provided by regular Follow up, which is usually via the telephone, but can be
face to face, it is all decided with the patient as per their preferences.
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The Team
The current team comprises of 4 staff members, two of whom
are registered nurses:
Macmillan 1:1 Team Leader - Susanne Holt (RGN)
Macmillan 1:1 Primary Care Nurse - Donna Dawson (RGN)
Macmillan 1:1 Cancer Support Worker - Jade Hughes
Macmillan 1:1 Clinical/ Clerical Support - Vacant
When are eHNA
assessments being
conducted *Around the time of diagnosis/ prior to
commencement of treatment (By the diagnosing trust
if possible, or elsewhere if circumstances dictate)
*At the end of treatment/ first review appointment
(By the trust responsible for the patients follow up care)
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Macmillan 1-1’s top 10 identified concerns
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Maintaining Patient-Centred Care • Utilise the community sectors to complete initial eHNA if applicable
• The community teams can adopt a much more flexible manner for eHNA assessment
and care planning, and can book in around hospital visits, in a setting and time to meet
the patients requirements putting emphasis on patient centred and holistic care.
• Collaborative working with other health and social care professionals to tailor the
appropriate care and emotional support to patients in the right place, at the right time
and by the right people
• Community teams can book in to complete a further eHNA assessment during
treatment to identify and reduce patient concerns and burdens.
• A routine 6month eHNA review conducted following on from the initial assessment.
• Specialist community support is provided along side the specialised hospital based
teams.
• Regular drop in clinics and information stalls held at local GP surgeries
• The community teams offer Health and wellbeing events for all patients
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On going community Support
The Macmillan 1-1 Support service are commissioned to
deliver 4 health and wellbeing events throughout the year.
Health and well being
To facilitate self management and
enable patients to live with and
beyond cancer.
To provide ongoing support in the
community and work collaboratively
with other community services and
sectors alongside the hospital
based teams to ensure holistic
patient centred evidence based
care is the fundamental driving
force for all patient interactions
The aim of ongoing support from The
Macmillan 1-1 Support Service
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The patient’s
perspective
of eHNA
Patrick Fahy, Person Affected by Cancer
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Q&A
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