What matters most to cancer patients?

The chief executive of the Patients Association and chair of All.Can UK looks at the findings of a major survey to gather patient and caregiver perspectives on inefficiencies in cancer care.

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The fundamental aim of the All.Can initiative is to encourage cancer services to focus on what matters to patients. Earlier this year, All.Can launched an international survey to explore patients’ experiences of cancer care and understand their priorities for how services could be redesigned to best support their needs. The UK is the first country to have results available and these will be presented at the Britain Against Cancer (BAC) conference.

This year’s conference is an exciting opportunity for everyone involved with cancer treatment to come together and discuss the most important issues facing the NHS that could lead to improvements in cancer care for patients.It is also extremely timely given the development of NHS England’s long-term plan and the confirmation that cancer will remain a priority of the health service, which allows the community to consider how it should be implemented in line with the Cancer Strategy. I am therefore delighted that All.Can is able to present at the conference and share some of the initial findings of the UK survey, as it provides unique insights into where advancements can be made to drive more patient-focused cancer care, improve outcomes and better use resources at the same time.

Given the pressures the NHS is facing, efficiency is understandably a crucial factor. However, the All.Can survey took a different approach, and determined "inefficiency" to be any aspect of cancer care that is not focused on what matters to patients.[i] This provides an alternative perspective on the state of cancer care in our NHS and is therefore an important source of information as the long-term plan is implemented. The results also point to a number of areas that should be improved if patients’ experiences of cancer care in the NHS are to be the best they can be.

While early diagnosis is a clear priority for the NHS and Government and has been identified as a key way to improve outcomes, the results from the UK survey suggest that this is not being achieved for many patients. Less than half (47 per cent) of respondents received a cancer diagnosis within a month, and more than one in five (21 per cent) people had to wait over six months to be told they had cancer. Furthermore, two in five (40 per cent) people were told that their cancer was something different, either initially or on multiple occasions, as they navigated the healthcare system.1

A cancer diagnosis is not only life-changing for the patient, but also their family and friends. It is therefore extremely important that the NHS is signposting patients and their relatives to sources of accessible and reliable information so that they can feel informed throughout their diagnosis, treatment and beyond. Patient groups and other third parties can play a vital role here; however, it is concerning that two out of five people (40 per cent) did not receive any information about patient groups, charities or other organisations that could support them.1 Working for the Patients Association, I see first-hand the incredible work that patient groups and other charitable organisations do in providing practical advice and assistance, services and complementary therapies for patients and their families. Ensuring better ways of working between NHS England and patient groups is a priority of All.Can UK and we will be looking to drive activity in this area over the coming year. The survey revealed that -

The survey results also point towards some broader concerns. For example, one in eight people (12 per cent) who responded to the survey had to resort to paying for treatment or care themselves, either because it was not available on the NHS or to avoid unacceptable delays.1 For me, this is a clear indication of the pressures that the NHS is under and how stretched resources can directly affect patient care. Furthermore, almost two in five people (39 per cent) had appointments cancelled by the centre managing their care.1 This highlights the need to better manage existing resources, as patients often have to plan their day, and those of others, around their appointments. Given the strenuous nature of a cancer diagnosis and treatment for patients and their families, I believe it is fundamental that the NHS does more to give people as much certainty as possible and these two areas in particular should be addressed as a matter of urgency.

The global survey and UK pilot was conducted by Quality Health, which is also the largest provider of patient and staff surveys to the NHS. Daniel Ratchford, Chief Executive of Quality Health, said: “This is the first international survey of its kind that importantly gives patients a voice to say what matters in their care and provides insights into where they have experienced inefficiencies. Following the launch of the UK findings, I think it will be fascinating to see how patients around the world view their care and how the NHS compares with other health systems, when we publish the international data in February 2019”.

The ambition of NHS England’s Cancer Strategy is to achieve the very best outcomes for people with cancer by 2020.[ii] Now that we are at a crucial stage in the development and implementation of the long-term plan, and consequently the future of cancer care delivery and services, it is more important than ever to consider the patient perspective and for NHS England to work with third parties to ensure that the health service is meeting the needs of patients. I believe that this new research from All.Can provides some important insights into what still needs to be done in order to achieve the Cancer Strategy’s bold aspiration, and, importantly, can inform ways in which care can be improved using the resources that we already have available within our NHS.

Rachel Power is chief executive of the Patients Association.

About All.Can

All.Can UK was initiated by Bristol-Myers Squibb, who fully fund the programme, and is open to other industry partners. All.Can is a multi-stakeholder initiative involving patient, clinical, academic and industry experts as well as policymakers. Internationally, the All.Can initiative is made possible with financial support from Bristol-Myers Squibb (main sponsor), Amgen, MSD and Johnson & Johnson (sponsors) and Varian (contributor), with additional non-financial (in kind) support from Intacare and GoingsOn.

You can find out more about the international All.Can initiative at www.all-can.org.

About the Patients Association

The Patients Association is a leading national charity which is dedicated to supporting the rights and interests of all patients and their families. It is one of the oldest and most distinctive health and care charities in the UK and covers all issues that affect patients.

[i] All.Can Patient Survey: UK findings

[ii] NHS England (2016), Achieving World-Class Cancer Outcomes: Taking the strategy forward. Available at: https://www.england.nhs.uk/wp-content/uploads/2016/05/cancer-strategy.pdf [Last accessed: November 2018].

Job number: ONCUK1801390-06

Date of preparation: November 2018

This article has been developed and funded by Bristol Myers-Squibb Pharmaceuticals Limited (BMS) in consultation with the author. BMS has had full editorial control over the content.