Di Riley Associate Director, Clinical Outcomes NCIN Commissioning Patient Centered Care & Improving Outcomes for People with Cancer Di Riley Associate Director, Clinical Outcomes NCIN

To cover: Improving Outcomes Long Term Conditions in Cancer Commissioning Patient Centred Services When commissioning need to understand the situation you are dealing with. Nos & types of cases, pathways, conflicting priorities, etc. Cancer changed from an acute to a chronic condition as survival improves & more people are living with cancer

National Cancer Intelligence Network? What are Outcomes Clinical v Patient Survival Quality of Life Stage of disease Return to normality Co-morbidity Treatment Toxicity & side effects Role of National Cancer Intelligence Network?

NCIN Goal Goal for NCIN: To develop the best cancer information service of any large country in the world Why? To provide feedback on performance to clinical teams To promote stronger commissioning To provide informed choice for patients To provide a unique opportunity for health services research i.e. To improve outcomes Build on current strengths of cancer registry system PCTs mandated for collection of defined datasets Collected via MDTs and sent to cancer registries

NCIS Example: Trends in one year cancer survival, breast cancer, females, England, 1985-2004 (five-year moving average) NCIN Publications Cancer Incidence by Ethnicity **June 2009** Cancer Incidence by Deprivation, England, 95-2004 **NEW** Cancer Prevalence (undertaken by Thames Cancer Registry) Cancer Incidence and Mortality by Cancer Network, UK, 2005 1 Year Survival Trends (incl. 1 year Survival by Cancer Network), Eng, 1985-2004

Improving Outcomes Public awareness Stage at diagnosis Co-morbidities at & after diagnosis Children and Young Peole ‘Outcomes Measures’ clinical patient reported International Benchmarking

Long Term Conditions: ....... A condition that cannot at present be cured, but can be controlled by medication and other therapies e.g. Diabetes Heart Disease Chronic obstructive pulmonary disease Over 15.4 million people in England with a LTC (~30%)

UK Population Between 1983 & 2008 % >65 and over, inc. from 15% to16%, an increase of 1.5 m people. By 2033, 23% of population will be >65 years of age nos people with a LTC will increase due to increasingly ageing population & unhealthy lifestyles By 2033, only 18% will be <16 years Population by age, UK, 1983, 2008 and 2033, ONS In 2008, median ages Women 40 years Men 38 years

Population aged 65+ years

Cancer Incidence Since 1977, incidence rate for cancer has increased in Great Britain, by 25% 14% increase in men 32% increase in women

Since 1977, incidence rate for cancer has increased in Great Britain, by 25% 14% increase in men 32% increase in women

Lung Cancer Incidence The lung cancer incidence rate is set to continue falling. Between 1975 and 2024 the lung cancer rate is projected to drop by more than one-third Lung cancer incidence increases with age and because we expect a higher number of older people in the UK population in the future, the numbers of lung cancer cases are set to increase even though the age-specific incidence rates are expected to drop.

Prostate Cancer Survival Beware PSA testing 5 year relative survival rates Increased by an average of 12% every 5 years between 1986 & 1999 42% to 65%

Breast Cancer Survival For women diagnosed with breast cancer in 2001-2006 (England) 5-year relative survival rates - 82% compared with only 52% thirty years earlier in 1971-75 CR-UK

Incidence and Mortality

UK Cancer Prevalence Breast (female) 550,000 Large bowel 250,000   UK 2008 estimates (based on diagnoses 1971-2004 applied to 2008 population; Thames Cancer Registry, 2008) Breast (female) 550,000 Large bowel 250,000 Prostate 215,000 Lung 65,000 Other 920,000 All cancers 2,000,000

So.....the implications! Ageing population Increasing presence of long term conditions Increasing risk of cancer Increasing cancer incidence Increased survival Reductions in mortality More living with cancer So, more people with LTC will also have cancer What about treatment effects?

Treatment Effects Treatment Long-term side effects Late side effects Chemotherapy Fatigue Menopausal symptoms Neuropathy Heart failure Kidney failure Infertility Liver problems Cataracts Infertility Liver problems Lung disease Osteoporosis Reduced lung capacity Second primary cancers Radiotherapy Fatigue Skin sensitivity Cataracts Cavities and tooth decay Heart problems Hypothyroidism Infertility Lung disease Intestinal problems Memory problems Second primary cancers Surgery Scars / Chronic pain Lymphoedema Long term side effects – side effects that start during Rx & linger for months/years, but most lessen or resolve with time Late effects of cancer treatment – apparent after Rx has ended – few months or years after

Commissioning considerations Long term conditions (Ageing population) Inc. cancer incidence Increasing survival Increasing prevalence Late effects Long term effects/conditions What drives Commissioning – cancer or condition?

Patient Centred Commissioning Strong cancer commissioning is vital to ensure: high quality services are delivered reflect needs of local populations reflect national priorities cost effective Responsibility for the implementation of most of this strategy will rest with Primary Care Trust (PCT) Boards as the statutory bodies responsible for commissioning the full range of services for their population within their allocated budgets.

Commissioning is Complex? Many types of cancer Many different care pathways Clinical teams in the community, DGHs and specialist centres. Some aspects require highly specialised commissioning at a national or SHA level. Other aspects overlap with non-cancer services (diagnostics & ?LTC) and commissioned at a more local level.

An example? A known cancer patient visits GP with breathlessness Refer back to oncology team? Refer to a cardiologist? Refer to a respiratory physician? Commissioners view: Commission patient pathways Underlying cause identified and treated Establish a ‘MDT breathlessness clinic’ Cancer MDT involved

The Cancer Commissioning Toolkit (CCT) Is a web tool – can access from anywhere You will be given passwords – Richard to discuss This is what you will see when you arrive - 23

Programme Budgeting

Sets out the key issues and questions for commissioners for: Cancer Commissioning Guidance was launched in January 2009 as a ‘sister’ product to the CCT Sets out the key issues and questions for commissioners for: Assessing health needs Reviewing services Monitoring performance Service specifications Easy to use format Interactive Quick links

Each section of the Cancer Commissioning Guidance contains Key Questions for commissioners – and where to find the answers

Patient Centred Care Late Effects Long Term Conditions Long Term Effects Holistic Needs Pat. Reported Outcomes Rehabilitation Services Survivorship

Commissioning considerations Long term conditions (Ageing population) Inc. cancer incidence Increasing survival Increasing prevalence Late effects Long term effects/conditions What drives Commissioning – Patient Pathways?

Any Questions? www.ncin.org.uk