Reinventing Cancer Support Ciarán Devane Chief Executive.

Reinventing Cancer Support

Ciarán Devane Chief Executive

Number of deaths from cancer per million persons living, 2009:

Copyright © Experian Ltd 2010, Copyright © NAVTEQ 2010, Based on Crown Copyright material Experian: County & Unitary Authority geography

Some of our achievement in 2008

Patient experience is poorer for rarer cancers

Breast cancer patients have the best experience while sarcoma patients have the worst

Rank Tumour 1 Breast

2 Skin3 Prostate

4 Lung5 Colorectal / Lower Gastro

6 Head & Neck7 Upper Gastro

8 Gynaecological9 Haematological

10 Urological*11 Brain / CNS

12 Other13 Sarcoma

*Urological excludes Prostate cancer which was included as a separate tumour group in the survey.# 32 questions identified significant differences. Factual questions were excluded as Trusts are not been rated on their performance for these.Source: Analysis by Macmillan Cancer Support based on Department for Health - National Cancer Patient Experience Programme – 2010 National Survey Report

Example: There is large variation in GP visits and subsequent health depending on cancer

A separate study found that a third of patients were reassured and not asked to return at the end of the initial appointment with their GP but

were subsequently diagnosed with a rarer cancer (not the top 4)Source: Department for Health - National Cancer Patient Experience Survey 2010; Rarer Cancers Foundation. 2011. Primary Cause? An audit of the experience in primary care of rarer cancer patients

Patient experience is poorer for those with a recurrence

Given written information about type of cancer Given name of CNS 0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Questions with biggest difference in scores between patients first treated in the last year compared to those first treated 5 or more years

ago

<1yr

1 to 5yr

> 5yr

We don’t know exactly how many people have a recurrence in England BUT we do know that their experience is worse than those more recently diagnosed

Source: Analysis by Macmillan Cancer Support based on Department for Health - National Cancer Patient Experience Survey 2010

Patients with long-term conditions are less likely to be positive about their experience than those without

Source: Analysis by Macmillan Cancer Support based on Department for Health - National Cancer Patient Experience Survey 2010

Example: from questions around

experience of deciding the best

treatment for people with select

long-term conditions

This effect is true for those patient both with and without a CNS BUT experiences are significantly worse for all those without a CNS

Deafn

ess o

r sev

ere

hear

ing im

pairm

ent

A long

-sta

nding

phy

sical

cond

ition

A long

-sta

nding

illnes

s

No lon

g-te

rm

cond

ition

0%

20%

40%

60%

80%

100%

Q18 Given written information about the side effects of treatment by long-term condition and CNS/No CNS

CNS

No CNS

Patient experience is poor for some information related questions & there is huge variation between Trusts

Q51 Family definitely given all information needed to help care at home

Q49 Given clear written information about what should / should not do post discharge

Q31 Patient given written information about the operation

Q26 Hospital staff gave information on getting financial help

Q25 Hospital staff gave information about support groups

Q18 Patient given written information about side effects

Q15 Patient given written information about the type of cancer they had

0% 40%

80%

120%

160%

200%

240%

280%

320%

360%

400%

440%

480%

520%

560%

600%

640%

680%

x Lowest scoring 20% of all trusts Middle 60% of trusts Average score

Largest variation is for experience of receiving written information on their operation – 70 percentage points between the lowest and highest scoring Trusts

Source: Analysis by Macmillan Cancer Support based on Department for Health - National Cancer Patient Experience Survey 2010

Some of our achievement in 2008

@macmillacancer @ciarandevane

• Deliver the 9 outcomes. Do more things we know to be right. Build great community services. Change 3 things radically. This saves money too!