Survivorship – why bother? Jane Maher NHS Improvement Lead (cancer) Chief Medical Officer, Macmillan cancer Support Chair NCSI Consequences of treatment work stream

Public view of cancer 2007 Incurable cancer Cured cancer

Cancer in the UK in 2008 There were 300,000 new cases of cancer in the UK in There were 150,000 cancer deaths in the UK in There were two million cancer survivors in the UK in Ten per cent of those over the age of 65 are cancer survivors – this figure is increasing by 3.2% each year.

Redesigning cancer care Diagnosis & treatment Recovery MonitoringEnd of life care Chronic and Progressive Managing transitions

5 Quantifying the invisible

Using available data and clinically led assumptions we estimate phases in the survivorship population Number of peopleExample Pathways

7 Recovery

The months after treatment Armes et al Journal clinical oncology 2009

Move More Daily Mail 08 August 2011 CIRC: 2,047,206

More lifestyle illnesses

*Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice OR: 1.59 More other chronic conditions osteoporosis & prostate cancer Nada Khan In press BJC

*Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice OR: 1.33 More chronic conditions Heart failure & breast cancer Nada Khan In press BJC

14 Monitoring

Literature review concerning current follow up after cancer “ A poor evidence base and no consensus as to the intensity, duration, setting or type of follow up required for most common forms of cancer” Evidence to inform the Cancer Reform Strategy : The clinical effectiveness and cost effectiveness of follow up services after cancer treatment ; York Centre for reviews and dissemination October 2007 (report available on request )

Change from a “one size fits all” approach

Pre-planned tests, triage, access back to specialists via trusted person Trusted individuals able to provide  Information  Access to tests  Access to expertise  Tools  Ongoing support

NCSI testing communities …. Many of the changes required to improve care and support are already in use, others are being piloted. 38 pilot sites around the country, testing approaches to care and support Almost 80 centres involved In addition, 19 Health and Wellbeing clinics by Macmillan

20 Treatment consequences

New chronic conditions RT & CT related illnesses e.g pelvic cancers 17,000/ year pelvic RT (UK) gynaecological, urological, colorectal, anal cancers 80,000 living after pelvic RT Bowel, urinary, sexual issues ?

Patients referred to a gastroenterologist a median of 2 years after pelvic RT (n =265) Rectal bleeding 171 Urgency 82 Frequency 80 Faecal leakage 79 Cancer 12% Unrelated 38% Most > 1 diagnosis Most could be helped Andreyev 2005

‘It’s the little things put together that wear us down’ ‘My GP says for a long time he did not know what was going on…I thought I was making a fuss.’ ‘‘My oncologist asked how I was – how embarrassing to tell him.’

Endocrine Growth /bone health Cognitive/hear/sight Cardiac dysfunction Renal dysfunction Infertility & sexuality Bowels/bladder Second tumours Gill Levitt 2008

25 Treatable incurable cancer

Cancer which has spread…

Cancer which has spread

Cancer which is incurable

Recurrent cancer & the need for early treatment with chemotherapy ? Ovarian cancer (OVO 5) Same Survival early cancer treatment or wait for symptoms (Rustin et al 2009) Early Delayed

Palliative care can improve survival as much as chemotherapy

31 End of Life

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When does survivorship end? Health professionals poor at predicting prognosis in the last year of life Errors (more than double or less than half of actual survival) 30% of the time Two thirds of these errors are overoptimistic Glare P et al, A Systematic Review of Physicians Survival Predictions in Terminally Ill Cancer Patients, British Medical Journal 2003, 327, 195-8

GP research database Radiation episode statistics Cancer registry Patient reported outcomes Hospital episode statistics Chemo prescriptions Using IT

REACH - Website 3.4 million

Information …. 39

Survivorship Coverage

English National Patient Experience survey Questionnaire and cover letter asked patients to refer to treatment at the Trust named on cover letter 158 trusts surveyed 109,477 patients Response Rate 67% (67,713) In patient or day case with cancer primary diagnosis 41

Reds v Greens –the power of benchmarking 42

Macmillan league table 43

Building one team The same story Smooth hand offs A sense of continuity Personalised

To improve care for people living with the effects of cancer Bridge the gap between research and practice Individual and collective projects Influencing UK research and policy agenda 12 Post Doc nurses & AHPS taking the agenda forward. Nurses & AHPs

Working through influential communities

‘Some are born great, some become great, some have greatness thrust upon them.’ Malvolio, Twelfth Night, Shakespeare

A new cancer story …. Some cancers are born chronic. Some cancers become chronic Some survivors have chronic illness thrust upon them – through treatment. And some are not chronic at all.

Thank you