Survivorship: the new kid on the block?

Jackie Turnpenney, National Cancer Action Team

September 2012

“We can no longer save people from drowning and then leave them on the dock to cough and splutter on their own in the belief that we have performed all we can”

(Mullan 1985)

Why has it developed as a concept?

What is NCAT doing to improve people’s experience following a cancer diagnosis?

1960’s linked to life after heart attacks 1980’s concept of survivorship appeared

in cancer related literature 1990’s autobiographical works (J

Diamond, L Armstrong)

The emergence of survivorship

Survival trends

Cancer rates are increasing Cancer treatments are improving More people are surviving cancer The number of people living with a cancer

diagnosis will double in the next 15 years Oncology’s goal was ‘cure’ Data is improving and importance is being

placed on prevalence as well as mortality

Saving people from drowning

The current system for follow-up isn’t going to work

How will we meet the physical, psychological and social needs?

These leave us with two challenges:

Late 1990s early 2000’s Survivorship as a concept doesn’t appear in the

guidance Early versions rarely mention rehab but palliative

care is included ‘It should be noted that half the patient population

is over 65; many older women live alone and may need practical help with their everyday lives.’ (Breast Cancer IOG)

NICE guidelines

The first recognition that there was more that could be done◦ Holistic Assessment◦ Psychology◦ Rehabilitation◦ Spirituality

NICE Supportive and Palliative Care Guidance 2004

‘Not enough attention has been given to the long term consequences of a cancer diagnosis for the ever increasing number of individuals surviving the disease or as to how to enable individuals to return to active lives following the completion of initial cancer treatments’

Cancer Reform Strategy 2007

Publication of the new vision document

?

2010 Autumn 2012

Survivorship was the last straw!

Rehab and psychology

Enhanced recovery

Long term conditions

Quality of patient

experience

Patient information and choice

Survivorship

Direction of travel for the NHS

Improved clinical outcomes for patients

Community based care enhanced

Reduced unscheduled admissions

Shift from biomedical to psycho-social medical model of care – consistent with aging population and Social Care

Maximisation of patients who can co-manage/ self care

‘We are already doing it – just the role of the CNS’

‘Its just supportive and palliative care by another name’

‘If palliative care started earlier that would address the problem’

“We can no longer save people from drowning and then leave them on the dock to cough and splutter on their own in the belief that we have performed all we can”

(Mullan 1985)

“Neither sport nor disability would be thought of the same way after the Paralympians “lifted the cloud of limitation”, a packed Olympic Stadium was told

Further Informationwww.ncsi.org.uk

www.ncat.nhs.uk/living with and beyond cancer/rehabilitation

email: jackie.turnpenney@ncat.nhs.uk