This article was authored by All.Can UK, a multi-stakeholder initiative involving patient groups and industry experts, and has been fully funded by the All.Can UK funding partners: Bristol Myers Squibb (primary sponsor) and MSD (supporting sponsor). Together, the All.Can UK membership defined the focus of the article. Bristol Myers Squibb and MSD do not intend to encourage the use, or advocate the promotion, of their products through this article and it does not include discussion of specific treatments or products. The audience for the article is predominantly comprised of commissioners, healthcare providers, those involved in commissioning and those working in healthcare in the private sector.
A cancer diagnosis and subsequent treatment can be devastating and debilitating for the wellbeing of the person involved. In England, there are at least 130,000 people living with ‘treatable but not curable cancer’.[i] These patients are more likely to experience worry, fear or anxiety due to their condition.[ii]
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Whilst patients would not be given chemotherapy without anti-sickness drugs to treat the immediate physical impacts, many people will go through diagnosis, treatment and living with and beyond cancer without receiving any accompanying psychosocial support.[ii]
Recognition of the need to improve the psychological wellbeing of people affected by cancer, as well as that of their families and carers, has been growing in recent years – with cancer and mental health both included as strategic priorities for NHS England.[ii]
This was emphasised in the NHS long-term plan, published in 2019, which set out the importance of improving access to personalised care for every person diagnosed with cancer, including access to psychosocial support.[iii]
However, the commissioning of these services has not evolved to keep pace 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 cited within a recent All.Can UK and HSJ roundtable was the ‘conceptual separation’ that exists between physical and mental health.[iv]
Different budgets, payment systems and contracting arrangements for cancer and psychological support services mean that there is often a lack of any consistent approach to commissioning of support services.[v]
This in turn leads to regional variation in the support on offer, with some geographical areas having no or limited access to psycho-oncology provision.[v]
Kelly, a cancer patient living in Bedfordshire, experienced these challenges first-hand. She says:
“I was given my Stage 4 diagnosis by a clinical nurse specialist (CNS) with no consultant present. When I asked for psychological support at this meeting, she said I wasn’t entitled to it as I lived in a different county to the hospital. I said it was critical that I received help and she said she would look into it. Two weeks later, I finally saw a consultant. When I said I still didn’t have any psychological support, he said they had a woman who “sits over there” (pointing to the end of the corridor), but that I couldn’t speak with her as I live in Bedfordshire and the hospital is in Hertfordshire.
I got very upset and said it was critical I speak with someone to help me process my devastating diagnosis. I eventually got support after five weeks of calling my GP directly and talking with my district nurse. It was offered via a charity though, not the NHS.
I later 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 that I couldn’t get psychological help at the same time when processing a diagnosis of incurable cancer”.
This is Kelly’s experience, but she is not alone. A report published by All.Can UK in December 2020 found that of those surveyed, half of patients who required psychosocial support following their diagnosis had not been able to access any services to help with their needs.[vi]
Rethinking how services are commissioned would help to address these barriers by enabling the system to begin to take a more holistic ‘whole person, whole system, whole pathway’ approach.[ii]
This means breaking down silos to ensure that the various needs of the patient are being met in a co-ordinated way, with all aspects of the system working together and new processes and systems put in place to facilitate properly integrated care.
Ceinwen Giles, chief executive of Shine Cancer Support and a member of the All.Can UK Working Group, explains further:
“Currently, access to psychological support is a messy patchwork of commissioned services, the private sector and charities.
If you live outside of a major city, it can be especially difficult to access support as the charities that often fill the gaps will not be active there.
One issue is that we don’t have a framework for what good looks like - what should all oncology services offer patients? What is the minimum that should be provided?
This is something that we need to specify so that we can begin to build services which support both the physical and psychological needs of patients.”
One organisation already taking action to encourage better joined-up commissioning is the Transforming Cancer Services Team (TCST) for London, part of the Healthy London Partnership.[vii]
In 2018, TCST - working together with Macmillan - produced a document with comprehensive recommendations, including both a pathway and service specification, to improve the commissioning of psychological support services for people affected by cancer across London.[v]
Some of the practical measures outlined in this document 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 identifying and providing a comprehensive network of psychosocial support which is understood by professionals, patients and their carers and families, and establishing a platform where professionals working across physical and mental health services can collaborate and share expertise to improve outcomes for patients.[v]
The guidance is predominantly concerned with driving a consistent best practice approach to psychosocial care provision across the whole pathway: from diagnosis, through acute treatment, living with and beyond cancer and end of life care.[v]
However, it also emphasises the need to identify gaps in psychosocial support and highlights the vital role that information provision and sign-posting, for example to third sector organisations and online support, can have in enabling people to access support early.[v]
All.Can UK are working to support this by developing a tool to map the psychosocial support services provided by its patient group members, making it easier for NHS staff to signpost cancer patients to psychosocial support services from day one of their diagnosis.
This year, All.Can UK will also be working to demonstrate the value of third sector service provision of psychosocial care that supports the NHS in driving better cancer patient outcomes. Through this work, the group will also seek to create guidance for provision of a clearer path for mental health and cancer commissioning within integrated care systems.
Ultimately, if we are to achieve the NHS’s ambition of improving access to personalised care, we must break down commissioning silos, with the flexible, person-centred, non-stigmatising, consistent support the third sector provides being recognised as an essential piece 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). ‘Commissioning guidance 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 Service Journal (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: commissioning recommendations, pathway and service specifications on 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: Placing the psychological wellbeing of people with cancer on equal footing to 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
Date of preparation: March 2022
