Cancer strategy: consultation analysis

Executive Summary

This is an independent analysis by Alma Economics of the responses to the public consultation on a new cancer strategy. This work was commissioned by the Scottish Government.

Purpose of the consultation

The Scottish Government launched a written consultation on a new cancer strategy between 12 April 2022 and 7 June 2022, which sought views on areas to prioritise in relation to cancer prevention, management and care. Responses submitted to the written consultation were rigorously analysed in order to provide a transparent evidence-base (including evidence on lived experiences) to the government. This evidence-base will effectively inform the decision-making process about a new cancer strategy and socialise the findings gathered from this exercise.

Methodology and key findings

The consultation was open to the public and received 257 responses in total, either through the online platform Citizen Space or via e-mail. The vast majority of responses (96%) were submitted through Citizen Space, while the remaining 4% of responses were submitted via e-mail. Out of the 257 responses, 156 were submitted by individuals and 101 were submitted by organisations.

The Scottish Government's online consultation was hosted on the Citizen Space portal and consisted of 11 closed-format and 33 open-format questions. Descriptive analysis was conducted on the responses to the 11 closed-format questions using Python. To synthesise important themes and perspectives raised across respondents for each of the open-format questions, a thematic analysis was conducted based on the manual review of all responses.

Overarching themes

Following the conclusion of thematic analysis, a number of recurring themes were identified across the responses submitted to all 33 open-format questions. These summarise the views most frequently shared by respondents and are presented below in order of frequency.

Prevention

Respondents came back to the notion of prevention numerous times, mainly focusing on three broad goals:

A. Promoting healthier lifestyles. There was almost unanimous agreement coming through responses that unhealthy habits can be a root cause for developing cancer, with references mainly made to smoking and high alcohol consumption. Suggestions were made about educating the public from a young age about the negative impacts of smoking and alcohol consumption on one's health as well as the merits of developing healthy lifestyle habits such as exercising.

B. Raising cancer awareness. Respondents stressed the importance of raising awareness among the population of common cancer symptoms and symptoms that can be mistakenly taken as signs of a different disease, as well as educating the public (and particular high-risk groups) to self-check regularly. Suggestions made included opening up the discussion about cancer in schools and the media, and organising public health campaigns in local communities.

C. Facilitating earlier diagnosis. Diagnosing cancer at the earliest stage possible was seen as critical by respondents. Responses identified a number of barriers that would need to be overcome to achieve that, including: i) extending the age range of regular testing to include young people as well as those older, ii) establishing regular testing for people with family history of cancer, high-risk groups and for those who have developed cancer before, iii) upskilling General Practitioners (GPs) to reach a timelier and more accurate cancer diagnosis (i.e. reducing the number of cancers initially being misdiagnosed).

Ensuring equal access

Equal access to testing and screening as well as to cancer care came up repeatedly in responses to the consultation mainly with reference to two issues:

A. Tackling unequal access driven by one's place of residence, sometimes also referred to by respondents as 'postcode lottery'. Responses mentioned rural areas and island communities as being disadvantaged by having less testing and treatment options made available locally, as a result of which individuals have to travel long distances to get a screening or to receive their treatment. Travelling long distances was also seen as detrimental to cancer patients' mental health as well as a deterrent for people to get regularly tested. Related to these issues were suggestions for community-based treatments, enhancing the role of community pharmacies, etc.

B. Tackling the role of socio-economic inequalities in people's access to testing and treatment. Respondents repeatedly acknowledged that the financial pressures for a cancer patient coming from a disadvantaged background are higher compared to other socio-economic cohorts. Suggestions featured in the responses included covering for transportation and any accommodation costs related to accessing one's treatment, including the reimbursement of family members and carers where appropriate. It was also stressed that financial support should be provided when patients have to take time off their work, during or after treatment.

Workforce support

Responses several times acknowledged the efforts and commitment of the workforce, but nonetheless mentioned that the workforce needs greater support. Suggestions included recruiting more staff and professionals with expertise currently missing from the health system, providing the workforce with more training opportunities to improve their skills, as well as making provisions for the emotional support of staff in cancer care (including access to counselling). With reference to the latter, some respondents reflected that the better emotional support the workforce receives the better care they can provide to patients.

Research and innovation

Respondents reflected repeatedly on the need to conduct more research in the area, so that innovative treatments and evidence-based approaches to care can be made available to patients. With reference to the latter, it was considered very important to be encouraging and making use of patients' feedback on the care they receive. Further suggestions included incorporating state of the art technologies, ensuring that patients with different types of cancer contribute to clinical trials and expanding data collection to identify patients' needs as well as develop a better understanding of less common cancer types. The collaboration between all relevant stakeholders (the NHS, patients, community services, academia, industry, patient representative bodies, etc.), including seamless communication channels, was seen as a key step to achieving the aforementioned.

Secondary, rare and less survivable cancers

It was identified across responses that some cancer types, particularly metastases and cancers that are rare or less survivable, need to gain greater recognition in the new cancer strategy. Respondents proposed that there is greater awareness raising regarding these types of cancer, including educating the public about the symptoms and where to access support. With reference to less survivable cancers, responses suggested that palliative care needs to be further developed for patients and their families/carers as well as bereavement support for the latter.

Person-centred approach

Placing the patients and their experiences at the centre of the new cancer strategy was seen as critical by respondents. It was mentioned that each patient's voice and their individual needs have to be listened to at all stages of their journey, from diagnosis to learning to live with cancer after treatment. It was suggested a number of times that care plans should be as personalised as possible so that patients feel that they are being valued and the care they receive is holistic, whereas keeping the patients informed about the treatment they receive at all stages of their care plan was seen as important at all times. Involving a patient's family in their treatment plan was also seen as an important step to personalising the support provided to them.

The Covid-19 pandemic

The Covid-19 pandemic came up several times in responses, particularly with reference to the challenges it posed for the health sector and the lessons that can be learnt from these. Respondents referred to the backlog of late diagnoses caused by the interruption of services and the expected increase in the demand for cancer care in the years to come as a result of this. Yet, respondents also considered that solutions introduced during the Covid-19 pandemic, such as alternatives to face-to-face GP appointments and screening, could be further developed to better manage workload in the health system and facilitate access to services in remote areas.

Planning for the new cancer strategy

Comments were identified across consultation responses on the feasibility of the set targets and proposed themes and areas of interest. Respondents suggested that targets should be made measurable to ensure they are met and advised to set shorter-term milestones so that progress can be meticulously tracked down. Furthermore, responses acknowledged that the new cancer strategy would have to address more clearly the barriers that need to be overcome in the process (e.g. lack of capacity within the NHS) and how this will be achieved.