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The Psychological Impact of Cancer: Commissioning Recommendations, Pathway and Service Specifications on Psychosocial Support for Adults Affected by Cancer

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The Psychological Impact of Cancer: Commissioning Recommendations, Pathway and Service Specifications on Psychosocial Support for Adults Affected by Cancer The psychological impact of cancer: commissioning recommendations, pathway and service specifications on psychosocial support for adults affected by cancer Transforming Cancer Services Team for London May 2018 Contents Acknowledgements .......................................................................................................... 3 Executive Summary ......................................................................................................... 4 Introduction .................................................................................................................... 12 Foreword ........................................................................................................................ 14 1. Understanding the psychological impact of cancer .................................................. 17 2. Background ............................................................................................................. 23 3. Producing the recommendations, pathway and service specification ..................... 34 4. A Pan-London Psychosocial Support Pathway for adults affected by cancer ......... 38 5. Mapping London provision ...................................................................................... 48 6. Key issues and recommendations .......................................................................... 55 List of Acronyms ............................................................................................................ 61 Glossary ......................................................................................................................... 62 References .................................................................................................................... 67 Appendix A: Service Mapping ........................................................................................ 92 Tables Table1: Number of cancer patients in London requiring specialist psychological support within 1 year of diagnosis ............................................................................................... 21 Table 2 National Cancer Patient Experience Survey (NCPES) 2016 ............................. 26 Table 3 Integrated IAPT Services .................................................................................. 54 Figures Figure 1 Range of factors that contribute to psychological distress ............................... 18 Figure 2 E Holistic Needs Assessment Results ............................................................. 27 Figure 3 Pan-London Psychosocial Support Pathway for adults .................................... 38 Figure 4 Recovery Package Model ............................................................................... 40 Figure 5 Levels of Psychological Assessment and Support (NICE 2004) ...................... 40 Figure 6 List of psychological services by Acute Trust and STP .................................... 51 2 Acknowledgements The Transforming Cancer Services Team (TCST) would like to thank Macmillan Cancer Support for enabling this work to be undertaken by funding Dr Philippa Hyman, Macmillan Mental Health Clinical Lead to carry out this project over a year. Partnership working with Macmillan, service users, service providers across acute, primary care and community services, other third sector organisations and support from commissioners has enabled recommendations to be produced in this report. When implemented, recommendations should significantly improve the psychological well-being and quality of life for Londoners affected by cancer. We would like to thank the Mental Health and Cancer Task and Finish Group who enabled this work to stay on track and provided constructive feedback at all stages of this project. Service users have been central to this work and their time, feedback and challenge has been invaluable. Finally we would like to thank the Living with and Beyond Cancer Team, within the TCST, for their support and guidance during the past year. 3 Executive Summary The aim of this work by the Transforming Cancer Services Team (TCST) for London, funded and in partnership with Macmillan Cancer Support, was to produce a document with comprehensive recommendations, including both a pathway and service specification, to enable commissioners to improve the commissioning of psychological support services for people affected by cancer pan-London. This piece of work follows on from the psychological support for people living with cancer guidance document published in 20151. It focuses specifically on what should be best practice in commissioning services for people affected by cancer and those significant to them, who experience emotional and psychological difficulties which impact on access to treatment, recovery and well-being. This includes services across the whole pathway: from diagnosis through acute treatment, living with and beyond cancer and end of life care. This document: Provides a high-level overview of the range and complexity of psychological difficulties that affect the treatment, well-being and recovery of people living with and beyond cancer Identifies how services are currently commissioned in London, the gaps in services and where improvements are needed Clearly sets out the key components of a psychological support pathway, what excellent services should look like and what could be achieved in practice Identifies the key education and training needs for the wider workforce and how they can be addressed Outlines next steps, what further consultation is needed and how the recommendations can be implemented and evaluated. Recommendations in this report have been based on a wide range of data and consultation including: Key documents and National drivers Mental health and Cancer Task and Finish group who met 6 times between January and December 2017 2 successful stakeholder events in May and October with excellent representation across the whole pathway including GPs, primary care workers, secondary care providers, the third sector, service users and commissioners as well as across all STP areas in London. A series of meetings between Improving Access to Psychological Therapies (IAPT) Psychologists and Psycho-oncologists Meaningful service user involvement throughout the process via focus groups, qualitative interviews, participation in stakeholder events and the Task and Finish group 1 London Mental Health Strategic Clinical Network and Transforming Cancer Services Team for London (2015) Psychological support for people living with cancer: Commissioning guidance for cancer care in London. http://www.londonscn.nhs.uk/publication/psychological-support-for-people-living-with-cancer 4 An equality and health inequality screening of the psychological support pathway Mapping refresh of cancer psychological support services within acute hospitals, Clinical Nurse Specialist (CNS) support, Liaison psychiatry, Information and Support Centres and integrated IAPT services across London. National Patient Experience Survey NPES (2016) https://www.healthylondon.org/our- work/cancer/patient-experience-survey/ and EHNA (Electronic Holistic Needs Assessment) data. Modelling of needs based on prevalence data for London (see prevalence workbook http://www.ncin.org.uk/local_cancer_intelligence/tcst) Collaboration across other TCST work streams-cancer rehabilitation, primary care (Cancer Care Review 4 point model) Consultation with mental health, primary care and end of life care commissioners Evaluation of the mapping data combined with feedback from a wide range of stakeholders has identified a range of key issues which build upon the ten recommendations made in the 2015 Psychological Support Guidance document1. ACCESS TO CARE 1. All acute hospitals where cancer is diagnosed and treated should have access to psycho-oncology teams, who are uniquely positioned as cancer specialists with expertise in the area of psychological and mental health Psycho-oncology teams work with a full range and severity of psychological and mental health difficulties associated with cancer. These teams play a vital role in both cancer prehabilitation and rehabilitation in supporting patients to access cancer investigations, treatment and post- treatment care thus improving patient experience and outcomes. They offer highly specialist clinical care for inpatients during medical admission and outpatients, as well as input for families and carers. Psycho-oncology teams provide highly specialist ‘indirect’ services including rapid access to complex case consultation, supervision for Level 2 workers, for example, Clinical Nurse Specialists (CNSs) and Allied Health Professionals (AHPs) to fulfil peer review requirements2, contribute psychological evidence and insights to quality improvement projects, train and support staff to deliver Level 1 care (for example, effective information giving, compassionate communication and general psychological support) and the recovery package. Additionally, a crucial role for psychologists with cancer expertise, embedded within cancer pathways is addressing end of life psychological issues by facilitating important conversations and decisions with treating clinicians and families. GPs, primary care professionals and community teams across the whole pathway should be able to easily access the expertise from psycho-oncology teams, thus improving patient experience and outcomes for all those affected by cancer as well as their families and carers. 2 NHS England (2011) National Cancer Peer Review Programme
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