The number of people living with and beyond cancer is thankfully on the increase. With more now surviving the disease than ever before, it is clearly imperative that the necessary care and support is available to help people live well both during and after active treatment.
The National Cancer Survivorship Initiative (NCSI) has already made great strides in supporting survivorship, through various means such as the provision of personalised care and support planning, health and well-being support, treatment summaries and cancer care reviews. What this means for people living with cancer is that they should be able to access their cancer team at any time, be supported to self-manage (if appropriate), that information is shared between all caregivers (in both primary and secondary care) and, where necessary, that referral is made for support services such as psychological support.
It is important to consider the psychological impact of living with and beyond a cancer diagnosis, not only in terms of quality of life but also emotional consequences and supportive care needs, as well as the emotional well-being of families and carers.
With over 70% of men living with prostate cancer expected to live for ten years or more from the time of diagnosis, it is possible that the onset of psychological distress within this population is not an acute threat that passes quickly, but a chronic one with peaks and troughs of severity that occur at key stages of the cancer journey. Indeed, current literature highlights a relatively high prevalence of depression and anxiety in men with prostate cancer, across the treatment spectrum.
Gathering real-world evidence
To date there is no national view of what level of psychological services are being offered to men living with prostate cancer and their families and carers across England. As such, the charity Tackle Prostate Cancer and healthcare consultancy Wicked Minds sought to understand – through The Freedom of Information (FOI) Act (2000) – what specific psychological support is on offer to men living with prostate cancer through hospital Trusts across England.
In October 2018, the groups sent an FOI request comprised of four questions to 136 hospital Trusts across the country that deliver prostate cancer services. The results showed that out of the 118 hospital Trusts that responded, only 28% had a record of the number of men living with prostate cancer being offered and referred to psychological support services.
Furthermore, just 36% of Trusts reported offering psychological support services to the majority (<90%) of men living with the disease, a mere three Trusts referred all men living with prostate cancer to a psychological support service when offered, and seven said they did not routinely offer or have access to such services.
One of the most alarming findings was that although most men (93%) living with prostate cancer beyond active treatment have access to psychological support services, the scope of services offered varied widely, ranging from the highest level of psychological support to provision of a Macmillan psychological support booklet.
The findings also highlight that the majority of psychological support services are delivered by charitable organisations (76%), followed by NHS commissioned services (67%). It is alarming that 28% of hospital Trusts have no NHS commissioned psychological support services (see Figure 1) and therefore rely on psychological services offered by national and local charitable organisations or through referral to a GP.
Further investigation is necessary in order to fully understand why NHS commissioned services for psychological support for these patients is so limited. From our study, some feedback alluded to services, where they do exist, seeming to be under pressure due to high demand and limited resources.
Offering psychological support
Our FOI study uncovered that there is unwarranted variation in the support offered by hospitals. If, as current evidence suggests, depression and anxiety are prevalent amongst men with prostate cancer at any stage of the treatment spectrum, then it seems necessary that each hospital Trust should offer, where appropriate, at least access to level 3 (a practitioner who is a counsellor, an NHS psychotherapist, a registered mental health nurse or a qualified social worker) or level 4 (a consultant psychiatrist, consultant liaison psychiatrist or a clinical or counselling psychologist) support.
Charities such as Tackle Prostate Cancer, Prostate Cancer UK and Macmillan provide extensive support through their nurses, support groups, telephone helplines and online resources (tools and publications). This valuable support offers men living with prostate cancer and their families and carers access to information to help make decisions on treatment choices, manage adverse events, and access psychological support through commissioned services or local peer to peer support groups.
Just as patients need access to the latest cancer drugs they also depend on charities to help them better understand their disease, fight for their rights in policy-related discussions and support their mental well-being. Patient charities and pharma have a shared interest in improving the lives of patients and recognise that working together can help further their common cause.
A way forward
Our findings demonstrate that the NHS is moving to a point where it over-relies on charities providing psychological support services and concerns are being raised by the charitable sector about the sustainability of this model.
Most of the services offered by charitable organisations are volunteer-led or supported through their national/local fundraising efforts. For these services to be sustainable and fit for purpose there needs to be a national framework in line with clinical guidelines and service user involvement and underpinned with government funding so that there is a more consistent and equitable approach to providing psychological support across England.
The pharmaceutical industry could play a vital role in supporting charities to improve mental health services within cancer care. This could include:
1. Improving care pathways to consider both cancer care and mental health services so that a whole person-centred approach is taken to managing people living with cancer.
2.Reducing unwarranted variation in psychological support for people living with cancer and their families and carers by holding providers and commissioners to account in offering equitable care.
3. Developing a national framework for psychological support for people living with cancer in line with national guidelines and service user feedback.
4. Providing educational programmes and nurse-led support services focusing on mental well-being for people living with cancer, their families and carers.
5. Lobbying for government funding to support charities to deliver psychological support services.
Pharma companies with expertise in mental health and cancer care could bring their capabilities and knowledge to help patient charities address some of the challenges highlighted above and from our experience of working across both sectors this would be a welcome approach to improving cancer care for all.
Roshani Perera is director at Wicked Minds and a Trustee at Tackle Prostate Cancer (The National Federation of Prostate Cancer Support Groups)
