From Cancer Plan to Cancer Reform Noёline Young Project

Noёline Young Project Manager

National Cancer Survivorship Initiative

From Cancer Plan to Cancer Reform • The Cancer Plan recognised that each year 200,000 people in England were diagnosed with cancer • Cancer is therefore one of the biggest causes of death in the country.

• The Cancer Reform Strategy (2007) defined further plans for improving NHS cancer care • A key recommendation was to create the “National Cancer Survivorship Initiative” (NCSI) with the aim of ”improving the services and support available for cancer survivors”.

• Two Million Reasons (2008) 2 million survivors of cancer in the UK (1.6 million people in England)

• 1 in 10 people over the age of 65 living with the disease.

• The National Cancer Survivorship Initiative (NCSI) was established 2008 to consider a range of approaches to survivorship care, tailored to meet individual patient’s needs • There were 7 workstreams including Assessment and Care Planning

The Assessment, Care Planning (ACP) and immediate post treatment workstream Four defined areas (subgroups) of work: »Assessment and Care Planning »Treatment Record Summary »Cancer Care Review »Immediate Post Treatment

Why Assess Patients Needs? “I feel like my whole life has been thrown up into the air, chopped in a million pieces and is now on the floor in front of me. How do I make sense of this? Where do I start?” in Jane Rankin (2008)

Why Assess Patients Needs? • Patients have reported that current routine follow-up appointments do not not meet their needs • Evidence suggests psychological, social, spiritual, financial and information needs that cancer survivors may have following their treatment are not meet by routine follow-up

Routine follow up appointments are not effective in terms of detection of recurrence. The majority of recurrences are detected either by patients themselves or on investigations which can be planned without a patient having to attend a clinic.

Resources are being wasted by providing services that are not fit for purpose Assessing and Care Planning with your patients will mean that their needs are addressed and resources are used appropriately

Thomas Jefferson 1743-1826

“It is a capital mistake to theorise before one has the data”

Timeline for The National Cancer Survivorship Initiative 2009 Development

2010 Testing

Emerging vision of care NCSI Vision document from NCSI Published - 5 key workstreams shifts

2011 Implementation Implementation of tested models of care

Piloting Models of Care and support

Ongoing improvement of care and support for cancer survivors

Gathering Evidence of benefits of new models of care

Establishment of long term survivorship research programme

Preparing principles of improved models of support for commissioners

Testing & Evaluating • Assessment and Care Planning • Cancer Care Review • Treatment Record Summary • Immediate Post Treatment

Adult Test Communities Phase 1 – 15 sites (2 in Wales) • Models of Care Phase 2 – 11 sites • Assessment and care planning • Treatment Record Summary

Tested Models ACP & TRS testing sites

System Enablers Customer Relationship Management System - Bristol

Patient information development sites: -Hillingdon -Christie -Hull -Mount Vernon

Survivorship Living Well Courses

Bristol Mount Vernon Hereford Ipswich Guys South of Tyne & Wear Clatterbridge Birmingham

Risk stratification: -Taunton

Community Support

Gloucester: Village Agents Medway Birmingham

Exercise / Rehabilitation

Sheffield Bournemouth Marie Curie Hospice

Telephone Management

Guys Birmingham Worcester Velindre Cancer Centre: Herceptin pathway

Workforce Development

Sheffield (HNA) Luton (oncology awareness) Mount Vernon (E learning re Benefits) Velindre Cancer Centre: Breathlessness pathway professional education package

Primary care led services

Luton Birmingham

Education Day/Session

Bristol Worcester Sheffield Christie (user engagement) Velindre Cancer Centre (Breathlessness pathway; self management

ACP Tools in Use • • • • •

ACP Framework self assessment tool Distress Thermometer* SPARC PEPSI COLA aide memoir Locally developed HNA tools

Care Plans - As part of assessment tool - Locally developed - Electronic versions

Success Factors

• Clinical Support • Focus on quality • Protected time to review systems and practice • Multi disciplinary approach • Patient involvement • Good baseline data – national and local • Sharing good practice • Enthusiasm for change

Learning so far • ACP post treatment is a key enabler for supported self management • Positive benefits – patients, staff • Assessment tools – simple, flexible, • Care plans • CNS resources – time, space, training • Identifying patients at the right point in journey • Treatment Record Summaries

Next steps

• ‘The Improvement Story so Far’ document – July 2010 • Economic Evaluation – pattern and cost of follow up • Proposed ‘pathways of care’ for commissioning – Autumn 2010 • Picker and Tribal evaluation reports – Sept/Oct 2010 • End of pilot stage report – Jan 2011

The Future • Competency training what is available and what can be delivered in 2011? • The use of electronic solutions • Management systems • Directory of Care • Patient Information • Exercise programmes • Education events

Useful Links for further Information www.nsci.org.uk www.improvement.nhs.uk/cancer www.dh.gov.uk