Research and evaluation reports

Date published: February 2022

This report brings together evidence from a two-year evaluation of the Barnsley Advanced Specialist Practitioner (ASP) care homes pilot project, funded by Macmillan Cancer Support and run in partnership with South West Yorkshire Partnership NHS Foundation Trust (SWYPFT). The pilot has aimed to provide enhanced care planning to care home residents in the last year of life, working with care homes directly and wider health services.

An independent evaluation of this ASP project in Barnsley was commissioned by Macmillan Cancer Support in 2019, to increase understanding of:

• the impacts of the ASP on high quality clinical and personalised holistic care and personalised choice in the last year of life
• what an appropriately skilled and integrated system working looks like
• the sustainability of personalised holistic care planning within the system.

Key findings:

• There are good indicators that the ASP role has supported a real improvement in End of Life (EOL) care for residents in care homes in Barnsley.
• There is work to be done to ensure that Advance Care Planning (ACP) for EOL takes place for people with months or a year or more to live.
• The role of the ASP is to train, support and coach care homes as well as to advise and potentially case manage complex cases. Having this dedicated and protected resource has really added value.
• The ASP role has been instrumental in a shift in how care homes are viewed within healthcare and a shift in how care home residents are viewed by GPs and others. The ASP sits within a wider framework that supports EOL care in homes.

Read the report (PDF)

Additional resources:

• Infographic for Advanced Specialist Practitioner (ASP) care homes pilot project (PDF)
• Watch a video presentation about the report (YouTube).

Date published: February 2020

In Scotland, there are huge variations in patient pathways and needs following a cancer diagnosis. Scottish Routes from Diagnosis uses data shared by patients and collected by the NHS to better understand these variations.

In partnership with Information Services Division (ISD) of NHS National Services Scotland, we linked and analysed data on the experiences of over 31,000 people in Scotland diagnosed with breast, colorectal, lung or prostate cancer in 2007 and in 2012. We then developed ‘Survivorship Outcome Groups’ (OGs) – robust definitions of health outcomes that can apply across and within cancer types. The findings will be used to inform service development, helping the healthcare system adapt to the reality of living with cancer in Scotland today.

Read the report:

• Cohort Summary [PDF]
• Context and methodology [PDF]
• Results: The cohorts up close [PDF]
• Discussion [PDF]

You can also explore the data through ISD’s interactive tool.

Key findings:

• More people are surviving their cancer than ever before, with some recovering to a state of health that was very similar to pre-diagnosis. But others have ongoing needs stemming from the effects of cancer and its treatment. Most notably, more people are experiencing cancer as a long-term condition.
• Five years after diagnosis, more than a third of people (36%) had experienced a new diagnosis of cancer, or were living with cancer that had never been cured or had spread.
• There is a huge variation in health outcomes between cancer types, and in people with the same cancer type:
  • In people with breast, prostate or colorectal cancer, five years after diagnosis almost 40% had experienced a new diagnosis of cancer, or were living with cancer that had never been cured or had spread. This is compared to just 27% of lung cancer patients.
  • Around two thirds (65%) of people diagnosed with lung cancer died within a year, compared to only 6% of breast cancer patients, 8% of prostate cancer patients and 27% of colorectal cancer patients.

The specialist cancer nurse and support workforce play a vital role both in improving outcomes and working to ensure that everyone living with cancer has a positive experience of their care.

The following report provides details of the size, composition, and location of cancer, palliative and chemotherapy speciality nurses and support workers in Scotland on a single day, 21 June 2019. The report can be used with other evidence to improve workforce planning.

Download the full report (PDF)

Date published: December 2018

In 2017, Macmillan commissioned an Allied Health Professional (AHP) workforce survey to better understand the role of AHPs in supporting people living with cancer.

The survey is the first UK-wide AHP workforce survey, and focuses on the four allied health professions. This includes dietitians, occupational therapists, physiotherapists and speech and language therapists.

The Allied health professional workforce report [PDF] and its findings can be used alongside existing evidence to improve workforce planning.

The new report includes information about:

• the age, location and pay grades of respondents
• the types of organisations in which AHPs are employed
• the settings in which AHPs see patients
• how AHPs support people living with cancer and the interventions they provided
• learning and development from the allied health professions we surveyed
• perceptions of AHPs’ workload.

Download the Allied health professional workforce report [PDF]

Date published: October 2018

This report is an insight into the impact of the delivery of personalised treatments for people living with cancer, and the implications for the cancer workforce. Personalised medicine is starting to impact pathways for people living with cancer; we are currently in a transition era towards personalised cancer care.

The report covers:

• An introduction to new personalised cancer treatments (including immunotherapy and genomics)
• the growth of new treatments
• what is coming out of clinical trials
• the processes involved in new treatment approval (e.g. NICE, Cancer Drugs Fund)
• the policy environment (including Brexit)
• the implications for the cancer workforce (e.g. roles, upskilling)
• the experiences of people living with cancer 
• information and support offers.

Download the Impact of new personalised cancer treatments [PDF]

Transforming Care After Treatment (TCAT) is a five-year RTS (Redesigning the System) programme funded by Macmillan Cancer Support. Focused on the care and support of people after treatment for cancer, TCAT is a partnership between the Scottish Government, Macmillan Cancer Support, NHS Scotland, local authorities and third sector organisations that aims to:

• Enable people living with cancer to play a more active role in managing their own care
• provide services that are more tailored to the needs and preferences of people living with cancer
• give people living with cancer more support to cope with the physical, emotional and financial consequences of cancer treatment
• improve integration between different service providers and provide more care locally.

Edinburgh Napier University was commissioned by Macmillan Cancer Support in May 2014 to conduct a national evaluation of TCAT. This work includes a rolling programme of evidence and learning bulletins on specific topics, including:

• Implementing Holistic Needs Assessment: Learning and evidence [PDF]
• emptyMeasurable outcomes from TCAT [PDF]
• emptyPartnership, integration and co-ordination [PDF]
• emptyUser involvement and TCAT [PDF]

The specialist cancer nurse and support workforce play a vital role both in improving outcomes and working to ensure that everyone living with cancer has a positive experience of their care.

The following report provides details of the size, composition, and location of cancer, palliative and chemotherapy speciality nurses and support workers in Wales on a single day, 9 October 2017. The report can be used with other evidence to improve workforce planning.

Download the Cancer Workforce in Wales report [PDF].

The specialist cancer nurse and support workforce play a vital role both in improving outcomes and working to ensure that everyone living with cancer has a positive experience of their care.

The following report provides details of the size, composition, and location of cancer, palliative and chemotherapy speciality nurses and support workers in England on a single day, 9 October 2017. The report can be used with other evidence to improve workforce planning.

Download the Cancer Workforce in England report [PDF].

The specialist cancer nurse and support workforce play a vital role both in improving outcomes and working to ensure that everyone living with cancer has a positive experience of their care.

The following report provides details of the size, composition, and location of cancer, chemotherapy and children, teenager and young adult speciality nurses and support workforce in Northern Ireland on 17 September 2021. The report can be used with other evidence to improve workforce planning.

Read the report (PDF)

Date published: April 2018

Findings from the second evaluation report on Improving the Cancer Journey (ICJ) in Glasgow are now available in full length and brief report format.

ICJ is a community-based multi-agency approach to care aiming to improve the outcomes of people affected by cancer in Glasgow by providing structured, individualised and integrated support.

This report builds on the previous evaluation report and looks in more detail at the impact of the ICJ on service users and at the partnership between the stakeholders involved in the programme's delivery.

• Full report 2018 [PDF]
• Executive summary 2018 [PDF]

Date published: September 2016

Findings from the first phase of evaluation fieldwork for the ICJ are still available in full length and brief report format. 

• Full report 2016 [PDF]
• Executive summary 2016 [PDF]

Date published: August 2017

There is growing interest in prehabilitation across Macmillan Cancer Support, as part of the broader cancer rehabilitation pathways and a sense that it is an important and valuable aspect of cancer care.

This prehabilitation evidence and insight report provides a centralised synthesis of prehabilitation resources and evidence.

The report defines prehabilitation and outlines a prehabilitation model of three stages: pre-assessment, prehabilitation interventions and follow-up post-treatment with key interventions including physical activity, dietary support and psychological support.

Download Prehabilitation: evidence and insight review [PDF]

Date published: January 2016

A partnership between Macmillan and Coventry City Council was launched in March 2013. The work of the partnership has been guided by four objectives aimed at improving the experience of people affected by cancer in Coventry: 

• Breaking down the barriers between services 
• Improving coordination between services 
• Filling in gaps in the provision of support 
• Inspiring and empowering people 

In March 2014, Macmillan commissioned an independent evaluation of the partnership in order to assess its impact and return on investment. This final report provides the findings of the evaluation, including progress against objectives and recommendations.

Download the Evaluation of Macmillan and Coventry City Council Partnership [PDF]

Date published: February 2015

Macmillan worked with the Northern Ireland Cancer Network from 2012-2014 to deliver the Transforming Cancer Follow Up Programme. This was a service redesign programme aimed at improving the quality of cancer patients’ post-treatment experience by promoting health and wellbeing, reducing inefficiencies in hospital follow-up, and enhancing service co-ordination and integration.

This final report provides the findings of the evaluation against each of the programme’s objectives and draws together the key learnings from Transforming Cancer Follow-Up.

Download Evaluation of the Transforming Cancer Follow-Up Programme [PDF].

Date published: May 2015

Macmillan has completed a two-year pilot project across 16 sites in the UK looking to support a more holistic approach to cancer care. The One-to-One Support pilot project funded four new Macmillan roles that sat alongside the existing cancer workforce, comprising complex case managers, community nurses, primary care nurses and support workers.

The final evaluation report indicates that by working together, the new roles and existing cancer workforce have enabled people living with cancer to have the time and guidance they require to identify their concerns, manage their own care and take back control. This has also had the positive outcome of helping to improve patient experience at the pilot sites.

Download the One-to-One Support pilot final evaluation report [PDF].

Date published: September 2014

Macmillan Cancer Support and Glasgow Life are now working in partnership to establish Cancer Information and Support Drop-in Services in Glasgow’s libraries. This is the largest programme of its kind being funded by Macmillan currently and is seen as a pilot for the UK as a whole. This evaluation has been commissioned to consider the progress, effectiveness and impact of the three year set-up phase of the program.

This final report draws on evidence relating to programme partnership, process, and early outcomes. The research has been based on an analysis of Glasgow Life monitoring data and a comprehensive program of fieldwork.

This final report explores the progress, impact and learning from Phase One of the programme. It is the third of three main reports prepared as part of the study.

Download the full report [PDF]

Download the executive summary report [PDF]

Phase two – Interim evaluation report

Date published: October 2018

This is an interim report from Phase two of the evaluation of Macmillan @ Glasgow Libraries. Phase two of the programme began in October 2015 and focused on further developing the integrated hub and spoke model to become fully mainstreamed into Glasgow Life structures, including all operational management and funding.

This interim report looks at referral data service users, interviews with service users and the views of library staff, volunteers and wider stakeholders.

Download the interim evaluation report [PDF]

Date published: October 2014

Macmillan commissioned the first UK-wide census of specialist adult cancer nurses on 24 April 2014. Responses from 168 trusts (97% response rate) have been evaluated and results for England and Northern Ireland are now available for download.

The report shows that the specialist adult cancer nurse workforce is ageing. One in three nurses is aged 50 or over, around one in two for some cancer types in certain parts of the country.

It also shows that there are considerable variations in the provision of specialist cancer nurse expertise for those diagnosed with different cancer types and across geographic locations.

Download the Specialist adult cancer nurses in England Survey [PDF]

Download the Specialist adult cancer nurses in Wales Survey [PDF]

Download the Specialist adult cancer nurses in Northern Ireland Survey [PDF]

Download the Specialist adult cancer nurses in Scotland Survey [PDF]

This report is evaluating the four-year old partnership between University College London Hospitals (UCLH) and Macmillan Cancer Support. The purpose of the partnership is to provide the best care, treatment, support, and information to cancer patients.

The main achievements of the partnership so far are:

• The Macmillan Support and Information Service, opened in April 2012, offers sessions to facilitate self-management, welfare and benefit advice, a psychology and counselling service, complementary therapy sessions and a wig fitting service to anyone affected by cancer.
• 11 Macmillan one-to-one support workers aspire to improve quality of care, patient experience and outcomes in a more cost-effective way.
• The multi-awarded Macmillan Volunteering Service engages 65 volunteers across 19 different roles.
• 846 staff members received Sage and Thyme® training to teach them the core skills of dealing with people in distress and empowering patients.
• The UCLH cancer clinical nurse specialist (CNS) forum is a community of 60 CNSs that emphasises the value of their role.
• 820 staff members have attended the Schwartz Center Rounds® which provide an opportunity for staff to reflect on the emotional aspect of their work.
• The Macmillan Values Based Standard® pilot was run at the trust for two years to improve patient-centred care.

The report was carried out by RAND Europe and the health services group at the University of Cambridge together with the Cambridge Centre for Health Services Research (CCHSR). They used in-depth interviews, an online survey, an analysis of the 2012/13 and 2014 National Cancer Patient Experience Surveys and a learning event.

The report is accompanied by a maturity model that helps assess the level of maturity of the partnership in terms of: (i) where the partnership is at now; (ii) where the partners want to end up/where they need to be to achieve the partnership goals (expected outcomes); and (iii) what they need to be doing over a defined period of time to get there.

For more information, download the following:

• Full report [PDF]
• Executive summary [PDF]
• Maturity model [PDF]
• The story so far: perceptions and accomplishments [PDF]

This paper reports on a project funded by Macmillan in order to better understand the needs of the UK nursing and allied health professional workforce to manage the increasing and future needs of cancer survivors.

The data from this study identified that staff felt confident in managing psychosocial care and communicating with patients but found long term medications management, care planning, long term and complex symptom management areas of difficulty. Only 80% of those surveyed saw patients at 12 months post treatment with 32% allied health professionals, 18% community and 29.6% of oncology nurses. Results of this survey have been used for future workforce planning and subsequent areas requiring further development of education and training.

Download the Evaluation of health workforce readiness and confidence in managing the consequences of cancer as a long term condition [PDF]

Macmillan Wales’ Senior Welfare Benefits Adviser, Helen Powell, represents Macmillan Wales on the Independent Advice Providers Forum (IAPF) which is made up of Welsh independent advice providers.

The Review of Advice Services in Wales Report, published by the IAPF in October 2013, was its detailed response to the Welsh Government’s Advice Services Review.  It looked at each of the areas that are crucial within the advice review:

• advice networks 
• service delivery including training, information or advice initiatives 
• telephone or online advice delivery capability and capacity 
• specialist advice provision on a wide geographical basis 
• developing national standards for information and advice 

The IAPF also commissioned the report: What the People of Wales Expect of Advice and Information Services and How to Ensure Accessibility for All which found the need to place the person at the heart of service design and delivery. It also highlighted the impact of Welfare Reform on people’s ability to access information and advice services increasing the need for independent provision.  

Their calls for action included joint working between services, including non-advice support services, delivery in a variety of ways to ensure fully accessible services for all,  increased awareness-raising of advice services, to inform people of their rights and develop a streamlined referral and signposting system.  

The work of the IAPF is ongoing.

Download The Review of Advice Services in Wales [PDF]

Download What the People of Wales Expect of Advice and Information Services and How to Ensure Accessibility for all [PDF]

Date published: August 2013.

The national Cancer Patient Experience Survey (CPES) allows hospitals to benchmark themselves with others across England. Uncertainty about how performance is influenced by the types of the patients served by different hospitals can lead to reluctance to use the survey results. Those working in poorly performing hospitals may attribute bad performance to (a perceived) ‘more difficult case-mix of patients’.

This can lead to staff disengagement and demotivation in the hospitals where staff need to be most engaged in improvement work. Our report shows, for most questions in the survey, case-mix adjustment makes a measurable but small change to overall rankings of hospitals. This means clinicians and managers can be confident in publicly reported performance (which does not take case-mix into account) and that poor performance is unlikely to be explained by the type of patient that the hospital treats alone; so improvement strategies can be implemented accordingly.

Download our report [Word]

Download the summary [PDF]

Date published: August 2013.

Studies have shown examples of positive links between employee engagement and patient experience. The precise nature of the relationship between staff and patients’ experience is only beginning to be understood by researchers.

Looking specifically at data from the national Cancer Patient Experience Survey (CPES) and the NHS Staff Survey, this study demonstrates a number of relationships between CPES and staff survey results at a trust level.

Download the full report [PDF]

Download the summary [PDF]

Date published: July 2013

There are more than two million people living with cancer in the UK today, but not all of them are living well. Cancer and its treatment often leaves a grueling physical and mental legacy for many years afterwards. It begs the question – do we really understand the true cost of being cured?

Download the Throwing light on the consequences of cancer treatment report [PDF]

Date published: June 2013

This paper outlines the results of an economic and qualitative evaluation commissioned by Macmillan Cancer Support into the Midhurst Macmillan Community Specialist Palliative Care Service.

The Midhurst Macmillan Community Specialist Palliative Care Service (Midhurst Service) is an innovative community based specialist palliative care model that enables many more people to die in their preferred place of care.

Download the report [PDF]

Date published: April 2013

For the very first time, Macmillan has commissioned UK-wide research to calculate the financial impacts of cancer. Researchers from the University of Bristol carried out an in-depth survey of more than 1,600 people with a cancer diagnosis, revealing just how hard the cost of cancer is hitting people. Our findings show that the financial burden is not the same for everyone, and that financial support is not always easy to access or good enough.

Download our executive summary [Word]

Download the full report [PDF]

Read more about the campaign.

Date published: May 2012

Macmillan Wales launched a Cancer Poverty in Wales campaign in 2012. This report contributed to the campaign by measuring and demonstrating the extent of cancer poverty in Wales. This supported the campaign in raising awareness of this issue and encouraging national stakeholders to take action.

Download Cancer poverty in Wales [PDF]. 

Download the campaign report: Counting the cost of cancer in Wales [PDF].

Date published: June 2012

This research is a huge breakthrough in seeing the real picture of how long people are living after a cancer diagnosis. For years we’ve counted the number of people who hit certain benchmarks: one, five or ten years since diagnosis, but it is median survival times that gives an accurate new picture of how long on average people might expect to live with different cancers, and how this has shifted over time.

Download Living after diagnosis: Median survival times [PDF].

Date published: August 2012

Find out about the number of older people (65 and over) who are living with a cancer diagnosis in the UK and how this number is set to grow in the next 30 years.

Download Prevalence of older people living with cancer [PDF].

Date published: November 2012

The number of people living with a cancer diagnosis in the UK is set to double from more than 2 million in 2010 to 4 million by 2030. Find out more about the ways that the cancer population is set to grow over time.

Download the report People living with cancer [PDF].

Date published: December 2012

We are carrying out a major project that is piloting new ways of providing one-to-one support for people with cancer across the UK. This represents a significant opportunity to improve the quality of care, quality of life and experience for cancer patients, carers and family members as well as identify new cost effective ways of improving quality of service.

Download One-to-one support baseline report [PDF].