Exploring the experiences of people living with a mental health condition and affected by cancer.

Executive Summary

Adults living with a long term mental health condition die on average 20 years earlier than the general population. (78) If they are diagnosed with cancer, they are less likely to survive than people without a mental health condition. (1, 3, 10)

Macmillan commissioned Middlesbrough and Stockton Mind to carry out action research to explore the experiences of people living with a mental health condition who access primary and secondary care services for concerns about cancer, diagnosis and treatment across the Teesside locality.

The research focussed on identifying what the issues are for people living with a mental health condition accessing the cancer pathway and understanding the challenges and difficulties and identify where improvements could be made.

Analysis of information gathered from a wide range of sources revealed that:

  • Information is not routinely shared between mental health and physical health services
  • Staff working within mental health and oncology services reported a lack of knowledge of each other’s services and how best to support people living with a mental health condition and affected by cancer
  • People received varying amounts of information and it is not tailored to people’s needs
  • Carers felt unacknowledged and unsupported
    The project also discovered initiatives being implemented to improve the cancer experiences of people:
  • Robust public health campaigns to reduce cancer risks and increase uptake in screening invitations
  • A focus on improving the physical health of people receiving treatment from mental health trusts
  • Improving access to early diagnosis and treatment for cancer
  • Improved support after cancer treatment to live with the long term effects of cancer including the implementation of the Recovery Package.

Working with people, their carers and professionals in cancer and mental health services was a central component of the research. People were offered the opportunity to tell their stories in semi-structured interviews, focus groups and workshops. Thematic analysis of the information collected revealed four main themes:

  • Gaps in systems and processes to share information between mental health and cancer services and through the cancer pathway
  • Gaps in knowledge about cancer and mental health in mental health and cancer professionals
  • Inconsistent offer of information at diagnosis and no information on managing a mental health condition and a cancer diagnosis
  • Carers feel unacknowledged and unsupported

During the second year of the project, further exploration of these themes was conducted through workshops, surveys and meetings. From the results of this work we suggest that work is undertaken to ensure that in the future:

  1. People are supported to manage and share their own information about their specific mental health needs whilst undergoing cancer treatment.
  2. People living with mental health conditions are offered support to take up cancer screening invitations and increase their knowledge of cancer and the risks
  3. The gap between mental health and physical health services is reduced with improved communication between services.
  4. Staff in mental health services have basic cancer awareness knowledge and can signpost people to relevant services and organisations when needed
  5. Physical health staff have a basic knowledge of mental health conditions and are able to offer support when required and signpost people to relevant services when required.
  6. People are offered information about managing their mental health condition when affected by cancer in a form that is accessible to them.
  7. Carers needs are considered and they are signposted to relevant carer support organisations.

Therefore, we propose to take forward the actions detailed below in 2019 to improve the experiences of people living with mental health conditions and affected by cancer:

  • Develop, pilot and evaluate a hospital passport type document by September 19
  • Investigate the feasibility of including cancer screening questions on the annual physical health check and identify the additional knowledge required by staff by March 19
  • Develop a module on cancer awareness for patients, carers and staff to be available through the Recovery Colleges by March 19
  • Organise a joint action orientated workshop for cancer and mental health staff to develop an action plan to reduce the barriers between the services by April 19
  • Provide mental health training & information on services to cancer staff and volunteers by July 19
  • Develop content for a booklet on managing mental health conditions when affected by cancer by November 19
  • Explore the potential for a specialist mental health post in cancer services by November 19

Suggested areas for further research are:

  • Further investigation of need for peer support groups for people living with mental health conditions and affected by cancer and their carers
  • Additional research into needs of carers of people living with mental health conditions and cancer
  • Additional research to understand admission data of people living with mental health conditions and a cancer diagnosis

Acknowledgements and thanks go to:

  • Senior managers and colleagues of Middlesbrough and Stockton Mind
  • Senior managers and colleagues of Macmillan
  • Members of the Steering Group
  • Members of the Co-production group and volunteers who have supported the project
  • Lead Cancer nurses and Service Improvement Manager of the Macmillan Integrated Cancer Care Service Improvement Project
  • The people who shared their personal stories and attended focus groups
  • The professionals who gave their time for individual meetings and attended workshops
  • Service managers who allocated time in their team meetings
  • The Cancer Patient and Carer Group, University Hospital of North Tees
  • All community and voluntary groups who extended invitations to attend their groups and meetings

Appendix

Read the Outcomes and Recommendations here