Personalised care – is it achievable?

Jessica Corner

Dean of Faculty of Health Sciences, Chief Clinician, Macmillan Cancer Support

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Personalised care – what do I mean?

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What patients want – Fast access to reliable health advice

– Effective treatment delivered by trusted professionals

– Participation in decisions and respect for preferences

– Clear, comprehensible information and support for self-care

– Attention to physical and environmental needs

– Emotional support, empathy and respect

– Involvement of, and support for, family and carers

– Continuity of care and smooth transitions

Picker Institute 2007

Personalised care • Compassion

• Empathy

• Responsiveness to needs, values and expressed preferences

• Co-ordination of care

• Information and communication

• Physical comfort

• Emotional support

• Involvement of family and friends

Institute of Medicine (2001)

A decade of addressing personalised care in cancer

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Engagement and involvement at every level

• Cancer networks

• Patient forums in Networks and Trusts

• Peer review of services in Cancer Centres by the National Cancer Action Team

• Consultation with service users as key stakeholders for policy decisions

• Committees, working groups and decision making has service user representation

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Advanced communication skills training

• 3 day workshop training

• members of multidisciplinary teams

• 7,000+ trained to date

Information and support centres

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Addressing access to a clinical nurse specialist

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How are we doing?

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Measuring outcomes

Cancer Patient Experience Survey Advisory Group

– Responsible for measuring and monitoring improvements in patients experience and making recommendations on the basis of this

– Data available to commissioners and the public on the quality of patient experience as key indicator of performance

– Developing sensitive indicators locally owned but also for national benchmarking

– Patient report outcomes (PROMS)

• 158 Trusts surveyed • One of the largest cancer surveys in the world • 109,477 patients surveyed: treated January-

March 2010 in each Trust • Patient definition: inpatient or day case; with

primary cancer diagnosis;

Methodology

• Questionnaire and cover letter asked patients to refer to treatment at the Trust named on cover letter

• First survey to cover rarer cancer

• First survey to use word “cancer” explicitly • Response Rate 67% (67,713): National inpatient survey

52%

Overall patients are positive – Patients overall responses positive – 80% or over on 33

of 59 scored questions – On 12 questions, cancer patients scored 70% or lower: 6

questions on information; 2 on nurses; 3 on integration of care across sectors and professions; 1 on waiting times in outpatients

– On comparable questions, cancer patients are more

positive than general hospital inpatients

– Rarer cancer patients have less positive experience

But variation in experience of care is significant

– Significant variations by Trust: e.g. given name of CNS - range is 97% to 59%

– 12 Trusts had no instances where patients rated them in

bottom 20% of Trusts on individual questions – 34 Trusts had 20 or more instances where they were rated

in the bottom 20% by patients: 18 of these were in London

We can’t see big change over time

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Knowing the name of a clinical nurse specialist has a significantly positive impact

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But Age, Gender, and Ethnicity are linked to poorer experience of care

Age : • Youngest age group 16-25 usually the least positive • But: 75+ group least likely to be given name of CNS

Gender : • Smaller scale differences than other variables • Men more positive about staff, privacy, respect and

dignity, told enough, discharge, written information on type of cancer, free prescriptions

Ethnicity : • On 21 questions white patients more positive • Receiving information, confidence and trust in ward

nurses and pain control are examples of this finding

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Trust level reports

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Trust level reports

Macmillan league table

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We are facing a major loss of confidence in nursing and the quality of personal care

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What is the picture across Europe?

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Evaluation of a complex intervention to improve experienced continuity of care (King et al BJC 98, 529-536, 2008 and BJC 100, 274-280 2009)

• Elements of continuity:

– Infomational

– Management

– Relational

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Concluding thoughts • Delivering personalised care is complex

• Involves multiple actions at the level of individual, organisation and system

• Skills, commitment and culture

• Ethos and values

• Placing power in the hands of individuals who are ill

• Self care and care of ‘selves’

• We are in danger of going backwards rather than forwards without concerted action

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