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Living With and Beyond Cancer

Implementing the personalised care agenda – new roles in the cancer workforce

© Copyright Greater Manchester Cancer. All rights reserved.

@GM_Cancer I #GMCC2019

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


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.


• 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?

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?


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


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%

[email protected]


HNA Clinic

Cancer Care Coordinator



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)


Vision

‘For all cancer patients at Stockport NHS Foundation

Trust to be empowered to live their best lives’


Mission

‘To engage, encourage, and educate patients; to equip them with the knowledge,

skills and support to effectively manage their lives

with cancer’


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


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


Data

0

10

20

30

40

50

60

70

80

90

Q1 Q2 Q3

eHNA offered Care plans completed


‘… 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’


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%


Anxiety


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


The challenge of full

implementation, and

outcomes in practice

Macmillan Staff Nurse



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


“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)


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%


Not Active 40%

Active 60%

Percentage of CNS actively using HNA at 5 GM trusts


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


Phase 1: Delivering the cancer strategy to 2021


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


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


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


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 %


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 %


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)


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


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



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.


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)


Macmillan 1-1’s top 10 identified concerns


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


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


The patient’s

perspective

of eHNA

Patrick Fahy, Person Affected by Cancer


Q&A


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