This article was written by All.Can UK, a multi-stakeholder initiative involving patient groups and industry experts, and is fully funded by All.Can UK’s funding partners: Bristol Myers Squibb (Main Sponsor) and MSD (Support Sponsor). Together, All.Can UK membership defined the focus of the article† Bristol Myers Squibb and MSD do not intend to encourage the use or promotion of their products through this article and it does not contain a discussion of specific treatments or products. The audience for the article mainly consists of clients, healthcare providers, clients and people working in healthcare in the business world.
The cancer diagnosis and subsequent treatment can be devastating and debilitating to the individual’s well-being. In England at least 130,000 people are living with ‘treatable but incurable cancer’.[i] These patients are more likely to experience worry, anxiety, or fear because of their condition.[ii]
While patients would not receive chemotherapy without disease drugs to treat the immediate physical effects, many people will undergo diagnosis, treatment, and life with and beyond cancer without receiving any accompanying psychosocial support.[ii]
Recognition of the need to improve the psychological well-being of people affected by cancer, as well as that of their families and carers, has increased in recent years – with cancer and mental health both included as strategic priorities for NHS England.[ii]
This was highlighted in the NHS’s long-term plan, published in 2019, which set out the importance of improving access to personalized care for every person diagnosed with cancer, including access to psychosocial support.[iii]
However, the adoption of these services has not evolved to keep up with this ambition and significant hurdles remain in ensuring routine access to services that support the psychosocial wellbeing of people living with and beyond cancer.
A key barrier mentioned in a recent All.Can UK and HSJ round table discussion was the ‘conceptual division’ that exists between physical and mental health.[iv]
Different budgets, payment systems and contractual arrangements for cancer and psychological care often mean that there is no consistent approach to hiring emergency services.[v]
This in turn leads to regional variation in the support offered, with some geographic areas having no or limited access to psycho-oncological services.[v]
Kelly, a cancer patient living in Bedfordshire, has experienced these challenges. She says:
“I received my Phase 4 diagnosis from a Clinical Nurse Practitioner (CNS) without a consultant present. When I asked for psychological support during this meeting, she said I was not entitled to it because I lived in a different province than the hospital. I said it was critical that I get help and she said she would look into it. Two weeks later, I finally saw a consultant. When I said I still had no psychological support, he said they had a woman who “sitting there” (pointing to the end of the hall) but I couldn’t talk to her because I live in Bedfordshire and the hospital is in Hertfordshire.
I became very upset and said it was critical that I speak to someone to help me process my devastating diagnosis. I finally got support after five weeks of calling my GP directly and talking to my district nurse. However, it was offered through a charity, not the NHS.
Later I changed hospitals and one of the first questions my new consultant asked was what psychological support I needed. It seems crazy that the NHS would spend thousands of pounds on my physical treatment in one place, but at the same time I couldn’t get psychological help dealing with a diagnosis of incurable cancer”.
This is Kelly’s experience, but she’s not alone. A report published by All.Can UK in December 2020 found that of those surveyed, half of patients who needed psychosocial support after their diagnosis were unable to access services to meet their needs.[vi]
Rethinking the way services are delivered would help to overcome these barriers by enabling the system to adopt a more holistic ‘whole person, whole system, whole trajectory’ approach.[ii]
This means breaking down silos to ensure that different patient needs are met in a coordinated manner, with all aspects of the system working together and introducing new processes and systems to facilitate well-integrated care.
Ceinwen Giles, chief executive of Shine Cancer Support and member of the All.Can UK Working Group, further explains:
“Currently, access to psychological support is a messy patchwork of commissioned services, the private sector and charities.
If you live outside a major city, it can be particularly difficult to access support because the charities that often fill the gaps are not active there.
One problem is that we don’t have a framework for what good looks like – what should all oncology services provide to patients? What is the minimum that must be provided?
This is something we need to specify so we can start building services that support both the physical and psychological needs of patients.”
One organization already taking action to encourage better collaborative commissioning is the Transforming Cancer Services Team (TCST) for London, part of the Healthy London Partnership.[vii]
In 2018, TCST – in collaboration with Macmillan – produced a document with comprehensive recommendations, including both a pathway and a service specification, to improve the uptake of psychological support services for people with cancer across London.[v]
Some of the practical measures outlined in this paper include ensuring that all hospitals responsible for diagnosing and treating cancer have access to a psycho-oncology team, requiring local health systems to take a ‘whole system’ approach. to identify and provide a comprehensive network of psychosocial support understood by professionals, patients and their carers and families, and to establish a platform where professionals working in physical and mental health services can collaborate and share expertise to improve patient outcomes.[v]
The guidance is primarily concerned with promoting a consistent best practice approach to psychosocial care across the entire pathway: from diagnosis to acute treatment, living with and after cancer, and end-of-life care.[v]
However, it also highlights the need to identify gaps in psychosocial support and the crucial role that information and signage, for example to third sector organizations and online support, can play in enabling people to access support early.[v]
All.Can UK is working to support this by developing a tool to map the psychosocial support services of patient group members, making it easier for NHS staff to refer cancer patients from day one of their diagnosis to psychosocial support services.
This year, All.Can UK will also work to demonstrate the value of the third sector of psychosocial care services supporting the NHS in driving better outcomes for cancer patients. Through this work, the group will also seek to create guidelines for providing a clearer path for mental health and cancer employment within integrated care systems.
Ultimately, if the NHS is to achieve the ambition of improving access to personalized care, we must break the silos of commissioning, recognizing the flexible, person-centred, non-stigmatising, consistent support that the third sector provides as an essential part of the puzzle.
[i] Macmillan (2021). ‘Treatable but not curable cancer’. Available at: https://www.macmillan.org.uk/about-us/treatable-but-not-curable-cancer. [Accessed: February 2022]†
[ii] Transforming Cancer Services Team (2020). ‘Assignment counseling for cancer psychological support’. Available at: Refreshed-February-2020-Guidance-doc-Psychological-support-for-people-affected-by-cancer-.pdf (healthylondon.org). [Accessed: February 2022]†
[iii] NHS England (2019). ‘NHS long-term plan’. Available at: https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf. [Accessed: February 2022]†
[iv] Health Diary (2022). ‘Roundtable: Meeting the Mental Health Needs of Cancer Patients’. Available at: https://guides.hsj.co.uk/5992.guide. [Accessed: February 2022]†
[v] Transforming Cancer Services Team (2018). ‘The psychological impact of cancer: assignment recommendations, pathway and service specifications for psychosocial support for adults affected by cancer’. Available at: https://www.healthylondon.org/wp-content/uploads/2018/05/Psychological-support-for-people-affected-by-cancer-May-2018.pdf. [Accessed: February 2022]†
[vi] All.Can UK (2020). ‘All.Can UK: Putting the psychological well-being of people with cancer on an equal footing with physical health’. Available at: https://www.all-can.org/national-initiatives/uk/#panel-pub-res. [Accessed: February 2022]†
[vii] Healthy London Partnership (2020). ‘Psychosocial support’. Available at: https://www.healthylondon.org/resource/psychosocial-support/. [Accessed: February 2022]†
Document number: ONC-GB-2200181
Preparation date: March 2022