We are currently running a number of inclusion projects to help tackle cancer inequalities.
Exploring the attitudes and behaviours of older people living with cancer
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Little is currently known about the attitudes of older people towards cancer, including their knowledge, beliefs and behaviours, and how these might impact upon outcomes.
Macmillan Cancer Support and Ipsos MORI’s report Older People Living With Cancer [PDF] is the first of its kind to look at older people’s attitudes towards cancer and its treatment. It also identifies new factors, which could help explain some of the reasons behind the poorer survival rates among older people.
These findings will be of interest to all those with a stake in improving outcomes for older people, including policymakers, commissioners and providers of health services, health professionals and charities.
You can also read an executive summary of the report [PDF] and our press release. For more information on this publication and our work on older people and cancer please email Andrew Jazaerli, health inequalities manager.
Macmillan Values Based Standards
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In 2009 we commissioned the development of an innovative framework and methodology for improving both patient and staff experience in cancer care services. ‘The Macmillan Values Based Standard ®' [PDF] identifies eight behaviours – practical things that staff can do on a day-to-day basis to ensure that people’s rights, including dignity and respect, are protected. It focuses on the ‘moments that matter’ to people and their carers. It was designed with the help of over 300 healthcare staff and people living with and affected by cancer across the country.
Research indicates that patient experience varies. But rather than thinking about how to make improvements for specific groups, the Macmillan Values Based Standard suggests that ‘difference’ is the norm and that care must respond to the needs of each individual patient.
The Macmillan Values Based Standard is staff, patient and carer-led. Rather than performance benchmarks ‘imposed’ from above, it emphasises co-productive behaviours between staff and patients.
Sites interested in piloting the Macmillan Values Based Standard have been increasing each year; and as at 2014 it has been piloted in over 30 sites across England and Scotland.
Find out more about the Macmillan Values Based Standard on LearnZone, or get in contact with the Inclusion Department at email@example.com.
Macmillan Online Research Communities
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Launching in October 2014, Macmillan is setting up an online research community to understand the experiences of people living with cancer from often excluded groups, whom we suspect may be under-served by existing cancer services. Initially, we will focus our research on three specific themes, looking at how age, ethnicity and sexual orientation may impact on patient experience.
So for this first phase of the research, we want to understand the experiences of three groups of people living with cancer:
Those from the Lesbian, Gay, Bisexual & Transgender (LGBT) community, and
Black, Asian and Minority Ethnic (BAME) people living with cancer.
We will undertake a series of research activities to understand patient experience for people from often excluded communities affected by cancer, and facilitate discussion between service users, providers, and policy experts. We hope this will allow discussion between people living with cancer and other experts that will result in a better understanding of the issues involved and what to do about them.
We need people from the LGBT community, BAME community and older people who have had a recent cancer experience, to take part in our research.
We are also looking for partner organisations who can help us to:
1. Promote the research project through their networks to recruit people with cancer to participate in the online research.
2. Explore ways of supporting people from our target groups to take part in the online research activities.
You can read our FAQs about the online research community here [PDF] and we would also love to hear from you if you would like to be involved. Please contact the Inclusion team at firstname.lastname@example.org if you have any other further questions, or can help with the project.
Cancer, Older People and Advocacy
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Since 2011, the Inclusion Department has been collaborating with the Older Peoples Advocacy Alliance (OPAAL) on a groundbreaking support project for older people affected by cancer.
Peer advocates - many of whom are older people with a cancer experience - provide support to other older people. Peer advocates build trusting relationships which enables those they support to confide worries and concerns.
The project has already begun to make a difference to people who are struggling by encouraging them to voice their opinions on decisions relating to treatment and care. It champions person-centred care by ensuring that the right information, all the implications associated with treatment, and the rights of the patient are presented clearly, allowing for any person accessing services and support to confidently make decisions about their own personal care.
So far the partnership has reached 170 people across five pilot sites in Sefton, Staffordshire and Dorset. Macmillan is extending this for three years, and adding more sites including the first in Cardiff, as well as over 300 new volunteers. They will support over 1,000 older people affected by cancer.
We have launched 13 patient stories on the value of the service in our report ‘Every Step of the Way’. For more info about the partnership please see the programme blog or get in contact with us at email@example.com
Schwartz Rounds are a forum for clinical and non-clinical staff from all backgrounds and levels of an organisation to come together and explore the impact that their job has on their feelings and emotions. We’re working in partnership with the Point of Care Foundation to establish a programme of Schwartz Rounds at 24 health & social care sites (Partner Sites).
The rounds aim to nurture relationships between patients and staff within a hospital, from porters to catering staff, pharmacists, and administrators. Rounds are one hour meetings where stories on challenging instances of delivering care are told by three to four people of whom only one is a doctor.
The methodology of the Schwartz Rounds is well tested and highly regarded. Staff who have attended Rounds have reported that their ability to provide compassionate care has improved and that relationships between staff/team-working have improved.
• Improved health and well-being of staff can improve the quality of care patients receive
• Organisations known to be committed to improving staff experience may be better able to recruit and retain staff
• Improving staff well-being can lead to reductions in sickness and absence, in the use of bank and agency staff and in the costs associated with recruitment and induction.
For more information on Schwartz rounds, please visit The Point of Care Foundation website or contact firstname.lastname@example.org.
Our Atlas of Variation in cancer patient experience highlights the challenges to achieving this at commissioner level. The Atlas is based on new analyses which:
• Uncover variations in patient experience at commissioner level
• Explore the relationship between cancer patient experience and deprivation.
• Explore the impact of cancer programme budget spend on patient experience.
Learn more about the Macmillan Atlas of Variation in Cancer Patient Experience [PDF], or contact email@example.com
Improving Cancer Patient Experience Pathway
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Cancer treatment can impact on many aspects of a person’s life, and have major implications for their finances and well being. However, services often focus on clinical outcomes in isolation from the diverse needs of people affected by cancer.
We have been working with Map of Medicine, along with experts and people affected by cancer, to create a national Improving Cancer Patient Experience Pathway to support people to make informed choices across their cancer journey.
The pathway is intended to help health and social care professionals deliver personalised cancer services and improve patient experience by highlighting sources of social, emotional, financial and practical support for people affected by cancer.
It complements the existing clinical care maps in oncology by showing the person affected by cancer’s journey through support services.
To access the Improving Cancer Patient Experience pathway visit the 'Map of Medicine' website.
You can also access the pathway through NHS Choices.
For more information please contact Carol Gibbons, User Support and Involvement Projects Manager, on 0207 091 2007 or firstname.lastname@example.org
Good Together is a groundbreaking initiative that involves Macmillan working with partners to deliver a calendar of events that gives people affected by cancer a place to come together through their love of a shared activity or passion, and to meet people like them.
Further information can be found here.