1 Final Version© Ipsos MORI Final Version Evaluation of Adult Cancer Aftercare Services Quantitative and Qualitative Service Evaluation for NHS Improvement

2 Final Version© Ipsos MORI Overview To establish a baseline in patient experiences of cancer aftercare services against which to measure the implementation of risk stratified pathways To provide NHS Improvement with the information needed to take the programme forward To evaluate care coordination services for people living with and beyond cancer in the 8 test sites and to explore people’s perceptions and preferences for these The development of risk stratified pathways of care Care coordination as an enabling project

3 Final Version© Ipsos MORI Living with and beyond cancer Source: Effective follow up: Testing risk stratified pathways, NHS Improvement – Cancer, May 2011

4 Final Version© Ipsos MORI Methodology Quantitative baseline survey Survey of breast, colorectal and prostate cancer patients diagnosed with their most recent cancer months before selection 12 page paper-based questionnaire 11 tumour projects across 7 test sites with up to 180 patients selected at each project Fieldwork completed between 21 st April – 2 nd September ,301 completed surveys, representing a response rate of 70% Qualitative work on care coordination Visits to 8 test sites since December 2011, covering 12 tumour projects 43 initial interviews with patients 1 project coordinator interviewed at each test site 4 interviews with cancer charities 3 additional interviews with staff for each test site Ongoing follow-up “pathway contact” telephone interviews with patients Final telephone interviews to be conducted with patients

5 Final Version© Ipsos MORI Methodology Engagement and initial interview days Final telephone depths with patients Patient contact interviews Staff telephone depths Charity contacts telephone depths Baseline postal survey across 7 sites Care Coordination

6 Final Version© Ipsos MORI 6 Overview of quantitative findings.....

7 Final Version© Ipsos MORI A model of care – Living with and beyond cancer

8 Final Version© Ipsos MORI Overall, how would you rate the quality of the care and services you have received since your initial treatment finished? Overall patients were very satisfied…. Base: All respondents (1,301); Fieldwork dates 21 April – 2 September 2011 Source: Ipsos MORI

9 Final Version© Ipsos MORI and care plans, for those who had them, were proving useful…. Source: Ipsos MORI Base: All respondents (1,301); Fieldwork dates 21 April – 2 September 2011 Base: All who have a care plan (279); Fieldwork dates 21 April – 2 September 2011

10 Final Version© Ipsos MORI How confident do you feel about managing your own health, if at all? Most patients were confident in managing their own health Base: All respondents (1,301); Fieldwork dates 21 April – 2 September 2011 Source: Ipsos MORI

11 Final Version© Ipsos MORI Do you have all of the..... Information provision varied Source, Ipsos MORI Base: All respondents (1,301); Fieldwork dates 21 April – 2 September information and advice that you need about the signs and symptoms of the cancer so that you can tell if the cancer comes back?...information and advice that you need about the effects of your treatment?..information, advice or support you need to help manage your health?

12 Final Version© Ipsos MORI Three-quarters of patients knew who they should contact... Do you know who to contact during office hours if you had a health concern related to cancer, or your treatment for cancer? Base: All who have contacted a health care professional during office hours (607); Fieldwork dates 21 April – 2 September 2011 My GP Yes No No, but I would know how to find out Have you ever needed to contact a health care professional about a health concern related to cancer, or your treatment for cancer, during office hours? Who did you contact? Yes No I don’t know/ can’t remember My GP practice nurse Cancer hospital nurse My pharmacist My cancer doctor or their secretary My district nurse or community cancer nurse Someone else Base: All respondents (1,301); Fieldwork dates 21 April – 2 September 2011 Healthcare at home representative Hospice Macmillan nurse Radiotherapist Trials practitioner/nurse Other support teams/centres Source, Ipsos MORI

13 Final Version© Ipsos MORI 13 Overview of emerging qualitative findings.....

14 Final Version© Ipsos MORI Nurse/ consultant Service Patient How is care coordinated at the test sites? Medical model Traditional ‘medical’ model Patient attends follow-up appointments at regular intervals Referred on as necessary to other services Patient has details of CNS to contact if they have concerns Care is coordinated for the patient

15 Final Version© Ipsos MORI Nurse/ consul- tant Service Patient How is care coordinated at the test sites? Self-management model (patient-centric) Self-management model Patient no longer attends follow up appointments Patient may have remote monitoring Patient is given information and advice to support them – signposting to other services Patient coordinates their own care

16 Final Version© Ipsos MORI Nurse/ consultant Service Patient Service How is care coordinated at the test sites? Self-management model (in practice) Self-management model Patient no longer attends follow up appointments In some sites they are offered an appointment with the nurse instead or a telephone appointment Patient may have remote monitoring Patient is given information and advice to support them – signposting to other services (information days)

17 Final Version© Ipsos MORI Nurse/ consult ant Service Patient Service How is care coordinated at the test sites? Self-management model (in practice) Self-management model Patient no longer attends follow up appointments In some sites they are offered an appointment with the nurse instead or a telephone appointment Patient may have remote monitoring Patient is given information and advice to support them – signposting to other services (information days)

18 Final Version© Ipsos MORI Nurse/ consultant Service Patient Service How is care coordinated at the test sites? Self-management model (in practice) Self-management model Patient no longer attends follow up appointments In some sites they are offered an appointment with the nurse instead or a telephone appointment Patient may have remote monitoring Patient is given information and advice to support them – signposting to other services (information days)

19 Final Version© Ipsos MORI Care coordination – key questions How well was care coordinated between services at each test site? How well was care coordinated across primary and secondary care? Did patients have access to a range of different services? Did patients know who to contact about problems?

20 Final Version© Ipsos MORI What is good care coordination? Patients described good care coordination as being: Someone is looking after them Leading to best possible quality of life Never out of touch with services Reliable Responsive Smooth QuickClear answers Right person at the right time Confidence

21 Final Version© Ipsos MORI Potential enablers to good care coordination To identify the support that a patient might need To make patients aware of the support available To provide patients with the skills, knowledge and confidence they needed Patients saw the CNS as having a coordinating role Assessment and care planning Information days Self-management programmes The role of the CNS To record and share informationHand-held record

22 Final Version© Ipsos MORI What happens when it goes wrong? Examples of bad care coordination were infrequent but consisted of: Seeing a different doctor every time Lack of information sharing or poor information sharing Admin errors (not receiving letters) Patient not involved in decisions Not feeling listened to Feeling rushed Possibility of falling through the net Worry that they will fall through the net even where not the case General stress

23 Final Version© Ipsos MORI Staff views Self management as an end goal Concerns about patients’ ability to manage their own care Self-refer Coordinate services Assessment and care planning Information days Self-management programmes Rapid Access Service Actions Information days Self-management programmes

24 Final Version© Ipsos MORI Challenges for care coordination Communication channels between primary and secondary care Cross site working Resourcing issues – moving demand? Under self-management, responsibility for coordinating care lies with patient (to a greater extent): Lack of care to be coordinated; or More services involved for the patient to coordinate themselves Lack of confidence Information overload A desire to feel ‘looked after’

25 Final Version© Ipsos MORI What next? Final interviews with patients Analysis of the qualitative data Evaluation of care coordination What else can the data tell us? To what extent are patients self-managing their care? What does this involve? How do they feel about it? What information needs do patients have? Quantitative follow up survey

26 Final Version© Ipsos MORI Final Version Thank you | | © Ipsos MORI This work was carried out in accordance with the requirements of the international quality standard for market research, ISO 20252:2006 and with the Ipsos MORI Terms and Conditions which can be found herehere