Transforming Cancer Follow Up Programme: PIDNICaN/PHA/HSCB

Cancer Survivorship Programme

Transforming Cancer Follow Up

Project Initiation Document

January 2011

Document History
Version / Date / Comment
V1 / 13/01/11 / First Draft: Presented to Steering Group
V2 / 18/01/11 / Amended Version following Steering Group
V3 / 25/10/11 / Amended steering group membership

Table of Contents

1.IntroductionPage

1.1Purpose of Document………………………………………3

1.2Approval of Document………………………………………3

2.Background

2.1Increasing Number of Cancer Survivors……………………….3

2.2Issues with the Current System…………………………………3

2.3National Developments…………………………………………..4

2.4Emerging Principles………………………………………………5

2.5Local Endorsement……………………………………………….5

2.6Funding for NI Programme………………………………………5

3.Terms of Reference

3.1Aim………………………………………………………………….6

3.2Objectives………………………………………………………….6

3.3Desired Outcome………………………………………………….6

3.4Scope……………………………………………………………….6

4.Deliverables / Product...…………………………………… 7

5.Constraints.……………………………………………………….7

6.Assumptions………………………………………………………..8

7.Project Organisation…………………………………………...8

7.1 Project Structure…………………………………………………....8

7.2Role of Project Steering Group……………………………………9

7.3Steering Group Membership……………………………………..10

7.4Accountability………………………………………………………10

7.5Management Reports……………………………………………..10

8.Funding Arrangements

Pilot Projects……………………………………………………….11

Set Up Costs……………………………………………………….11

9.Evaluation

9.1 Service Evaluation…………………………………………………11

9.2 Clinical Outcomes………………………………………………….11

10.Interfaces………………………………………………………….12

11.Project Plan………………………………………………………13

1Introduction

1.1Purpose of Document

This Project Initiation Document (PID) sets out the Terms of Reference, Project Structure and Outline Plans for a two-year service improvement programme aimed at introducing and testing new models of cancer follow up across Northern Ireland, that will begin to transform how such services are delivered. This is a partnership arrangement between HSCB, PHA, NICaN and Macmillan Cancer Support. The programme development phase will commence in April 2011with full implementation of pilot projects in September 2011.

1.2Approval of Document

The PID will be formally approved and signed off by the project steering group. It will act as a basis to measure project processes and management against, as well as delivery of acceptable outcomes.

2 Background

2.1Increasing number of cancer survivors

Currently within Northern Ireland there are an estimated 55,000 cancer survivors, a figure that reaches two million when taken across the UK. This number is growing by around 3.2% per annum, which means, if current trends continue, by 2030 there could be over four million cancer survivors in the UK; with breast, prostate and colorectal cancers accounting for over half.

Until recently, cancer has been viewed in simple terms; either people are cured and get back to normal or else they will have terminal cancer and die. However the cancer landscape is changing and the picture emerging is a more complex one. While some still die within a year of diagnosis, advances in treatment mean that those with incurable cancer can live for years, and experience similar illness patterns to those with long-term conditions, with many suffering from complex co-morbidities.

Even for people considered cured, returning to normality is fraught with difficulties, as the consequences of the disease and treatment, impact not only physically but also on an individual’s psychological, financial and social functioning. The consequences of treatment can occur soon after treatment but serious effects can also be experienced years later.

2.2Issues with the current system

Across the UK there is a growing recognition that cancer follow up is not as effective as it could be. Despite cancer increasingly becoming a chronic disease the current follow up model is framed around acute illness. The emphasis is on surveillance and monitoring to detect recurrence, yet there is evidence that up to 70% of recurrence is picked up outside clinics.

The system as currently organised will be unable to either cope with the projected increase in the number of people living with cancer or address their rehabilitation and secondary prevention needs. As people with cancer live longer they have a much poorer health profile than the remainder of the population and are likely to become greater users of the health service; however, if appropriate rehabilitative measures were available co-morbidities could be significantly reduced.

Considerable duplication in follow up practice exists, with many patients being seen by their surgeon and oncologist. Since each outpatient appointment costs around £106 there is an evident waste of resource.

Inefficiencies are exacerbated by the fact that many appointments add little or no value for either the patient or the doctor - so called “empty appointments”.

There are indications that patients’ needs are not being adequately addressed nor are they getting the help they need to get their lives back on track. They report

  • Unmet information needs, feeling unprepared about what to expect after treatment, what to look out for, or whom they should contact.
  • Feelings of abandonment at the end of treatment as the safety net provided by treatment routine is suddenly gone, some describing after care services as an after thought.
  • A national survey found key issues of anxiety, depression, isolation, negative impacts on self-identity and self-image. Physical problems include fatigue, bowel problems, and loss of libido, impotence and infertility.
  • Clinics are so rushed patients do not have the time to discuss concerns. Studies show that patients are selective in raising health and well being issues, as there is a reluctance to waste the doctor’s time.
  • Clinic appointment times are rarely on schedule incurring lengthy waits for patients, with some travelling long distances for short consultations.

2.3National Developments

In other parts of the UK considerable attention is being paid to the aftercare needs of cancer survivors under the auspices of the National Cancer Survivorship Initiative (NCSI). This is a partnership between the Department of Health and Macmillan Cancer Support facilitated by NHS Improvement. The NCSI has been charged with improving the quality of service and quality of life for those living with and beyond cancer.

The idea of survivorship is taken to include anyone from the point of a cancer diagnosis onwards, and recognises the impact of cancer on the person physically, psychologically and socially

The NCSI has identified 5 key shifts that are essential to ensuring service provision is fit for the future. The key shifts are:

  • Cultural and attitudinal change from illness to focus on recovery, health and well-being
  • Improved information delivered in an appropriate format and manner
  • Individualised assessment and effective post treatment care plans
  • Tailored after-care pathways based on risk of future problems associated with cancer type, treatment and individual circumstances
  • Improved measurement through patient reported outcomes and experience measures.

The vision document can be found at

Over the past two years, test communities across England and Wales have been testing elements and models of future care and support that are focused on addressing the needs of those living with and beyond cancer. They have collected baseline information about current service delivery and issues with this delivery to inform the development of new models.

2.4Emerging Principles

From the pilot testing, principles for future practice have emerged which should be integral elements of all new cancer follow up models:

  • Risk Stratification: Patients should be risk stratified into an appropriate pathway of care based on their individual needs, and the needs arising from their tumour and the treatment they have received
  • Personalised care plans: These should be developed, and owned by the individual, which sets out how their needs will be met across care settings
  • Information to meet individual needs: This should be available in a format easily accessible by the patient and promotes confidence, choice and control
  • Care Coordination across care settings which ensures consistency of service delivery through appropriate service commissioning
  • Rapid access to appropriate health or care professional when problems arise

2.5Local Endorsement

At a NICaN workshop during 2009 for patients and carers, a key message heard was the need to radically improve aftercare services. In April 2010 professionals echoed this at a second NICaN workshop. In his opening remarks Chief Medical Officer Dr Michael McBride stated, “We need to move away from the current model of follow-up which focuses solely on physical symptoms and illness, to one that focuses on health and well-being. This requires flexible, accessible, risk based follow up models… personalised to the individuals’ needs, with the patient a key contributor to setting goals and agreeing plans”.

2.6Funding for NI Programme

Macmillan Cancer Support have secured funding to support a cancer service Improvement programme through pilot projects, which aims to begin the process of transforming the current hospital-based routine follow up system to one that is tailored more to the need of the individual whilst at the same time reducing demand on hospital outpatients.

3.Terms of Reference

3.1Aim

The overall aim of this two-year service improvement programme is to introduce and test new models of cancer follow up across Northern Ireland that will begin to transform how after care services are delivered. This will contribute to more efficient and effective service delivery, improve the patient experience and support the commissioning of future service provision.

3.2Objectives

Patient related objectives include:

  • A holistic assessment, treatment summary record and an agreed individualised pathway of care
  • Information tailored to their needs, provided in an appropriate format that:
  • Signposts them to services in support of self-management,
  • Offers a clear management plan and point of access back into the system if required
  • Provides guidance on life style changes to maximise health and well-being and supports people getting their lives back on track.
  • Includes information on the long-term effects of living with and beyond cancer
  • Better care coordination and an improved patient experience

Service related objectives include:

  • A reduction in the number of hospital follow up appointments
  • A reduction in the duplication of follow up between surgery and oncology
  • A reduction in inappropriate hospital admissions for those involved in the pilots
  • Better use made of skill mix initiatives in relation to cancer follow up to create a more efficient and effective service
  • The development of regionally agreed risk stratification protocols
  • Holistic assessment for all patients and direction into the most appropriate aftercare pathway
  • Care Coordination mechanisms and rapid access to services as required
  • Desired Outcome

Anticipated benefits from the programme include:

  • Improved patient satisfaction
  • Effective resource utilisation
  • Streamlined services

3.4Scope

This programme is applicable to cancer services within HSC Trusts and also to Primary Care. Given the widespread collaboration required to make it successful, it includes members of the voluntary sector, community groups, local councils and educational facilities who will work in partnership with Trusts and Primary Care to achieve the outcomes of the project. Evidence of integrated working is essential hence the requirement to process applications for funding through the current service providers (HSCS Trusts) Chief Executives’ Offices.

Since this is a two-year programme each pilot project must address the issue of service sustainability beyond the lifespan of the project.

The judging criteria outlined below illustrate the scope of individual project: Each project must:

  • Demonstrate cost effectiveness
  • Be cost neutral recurrently
  • Impact on significant numbers of patients
  • Be deliverable and replicable
  • Demonstrate a change in practice and not just additionality
  • Have clear measures for success including measures to show improvements in the quality of patient experience
  • Secure explicit support and or direct involvement from primary care
  • Describe criteria for patient selection to new aftercare pathways
  • Secure Trust Chief Executive support

4.Deliverables / Products

The overarching deliverable is a new model of follow up for risk stratified patients within each tumour site. However, elements of the programme include:

Project initiation document

  • Project plan
  • Selection of Pilot Projects
  • Recruitment of Macmillan Survivorship Service Improvement Manager
  • Interim progress reports to Steering Group
  • Stakeholder Learning Events
  • Experience of Care Questionnaires
  • Regionally agreed Risk Stratification Tools
  • Clearly identified aftercare pathways
  • Agreed holistic assessment tool
  • Agreed care plan record
  • Agreed patient information
  • Evidence of partnership working with voluntary and community services in the delivery of health and wellbeing programmes
  • Evidence of effectiveness of new approaches

5.Constraints

Time:The main constraint facing the programme is the short timescale. The Project Plan must take account of this. Monitoring of progress against agreed milestones must take place to ensure preparation and roll out are delivered in a timely fashion. Adopting learning from other parts of the UK will help to expedite development and implementation.

Funding:The number of applications received may exceed the Macmillan funding available. However restriction on the number of applications will limit the impact of service redesign. The judging panel will need to take account of this tension. The non-recurrent nature of funding also places significant restrictions on the nature and focus of bidding applications, since in many instances there are known gaps in the workforce which are perceived as critical to service transformation.

Service Capacity:Cancer services are presently under significant pressure with further growth anticipated year on year, and although the will to transform services appears to be there, the capacity to bring this about is limited. Service managers have flagged this up as a real concern.

Quality Assurance and Clinical Audit:Existing systems for the collection of clinical data and performance may need to be adapted to include additional information required by the Transforming Cancer Follow Up Programme.

6.Assumptions

The following assumptions are made:

  • That transforming cancer follow-up remains a strategic priority for the Health and Social Care Service and the programme is viable
  • There is commitment for the programme from all key stakeholders
  • The approach to tailored aftercare services being tested in England is of relevance to and is worth testing in Northern Ireland
  • Pump prime funding will provide the means to initiate radical change which can be sustained beyond the lifespan of the project in the absence of recurrent funding

7.Project Organisation

7.1Project Structure

This is a partnership arrangement between HSCB, PHA, NICaN and Macmillan Cancer Support.

A steering group, comprising key stakeholders, will oversee the programme of work. Steering Group meetings will take place quarterly as a minimum, but will ultimately be determined by the needs of the Project Plan. The Director of Commissioning, HSCB, will chair the Steering group.

A small project team, funded by Macmillan Cancer Support, comprises a Programme Lead (0.4 WTE Network Nurse Director); 1 WTE Survivorship Programme Manager (to be recruited); and 0.75WTE Administration Support (to be recruited). The Network Medical Director will provide medical leadership as required.

The project team will work closely with identified Trust teams, to develop collaborative working arrangements and provide support to ensure the success of the overall programme. Trusts will be expected to establish local steering groups withexecutive leadership, identified trust lead/s, clinical leadership and primary care / LCG involvement.

The extended project team will therefore comprise the Macmillan funded network posts and Trust cancer leads. Where possible the project team will utilise established groups to progress work for example Network Tumour Groups for regional protocol development.

Other working arrangements will be established as required to maximise regional support, share learning and monitor progress with the pilot projects.

7.2Role of Project Steering Group

The role of the steering group is to

  • Make decisions based on consensus
  • Approve the Project Initiation Document (PID)
  • Direct the programme, provide guidance and ensure adherence to the timed project plan
  • Review and approve the timed project plan and any changes to it
  • Review each completed stage of the programme and approve progress to the next stage, ensuring that all stages are delivered in line with the agreed programme plan, resources and timetable
  • Monitor and control the progress of the project at a strategic level
  • Ensure the programme meets agreed standards of quality, time and cost
  • Consult and communicate with all relevant professional groups and appropriate bodies regarding the development of the programme
  • Represent the programme within the HPSS and beyond
  • Provide assurance that all products have been delivered satisfactorily
  • Authorise project closure

7.3Steering Group Membership

Constituent / Name / Job Title / Organisation
Chair &Commissioner / Mr Dean Sullivan / Director of Commissioning / HSCB
Programme Lead / Mrs Liz Henderson / NICaN Nurse Director & Macmillan Survivorship Lead / NICaN
Co Chair Cancer Commissioning Group / Dr Miriam McCarthy / Consultant in Public Health / PHA
Programme Funder / Mrs Heather Monteverde / NI Regional Manager / Macmillan Cancer Support
Primary Care / Dr Margaret OBrien / Assistant Director Integrated Care / HSCB
Patient Perspective / Miss Ruth Smith / NICaN PPI Representative
Epidemiology / Clinical Audit / Dr Anna Gavin / Director NI Cancer Registry / NI Cancer Registry
Public Health Agency / Ms Janis McCullough / Nurse Consultant / PHA
Commissioning / Mrs Bridget Tourish / Services and Strategic Planning Senior Manager, Regional / HSCB
Cancer Network / TBC / NICaN Medical Director / NICaN
PMSID / Dr Windsor Murdoch / Primary Care Advisor to HSCB / HSCB
Primary Care Representative / Dr Johnny Browne / Macmillan GP Advisor NI / Macmillan
LCG representative / Mr Iain Deboys / Lead commissioner to Belfast LCG / Belfast LCG
Programme Manager / Ms Mary Jo Thompson / Macmillan Survivorship Programme Manager / NICaN

7.4Accountability

The chair of the Steering Group (Director of Commissioning HSCB) has overall accountability for the programme. The Macmillan funded Survivorship Programme Lead (NICaN Nurse Director) is accountable to the chair of the Steering Group. The Macmillan funded Survivorship Programme Manager (to be recruited) is accountable to the Macmillan Survivorship Programme Lead/NICaN Nurse Director.

Day to day work will be monitored and carried out by the Programme Manager. Any major deviation from the agreed project plan will be immediately reported to the project steering group.