Cancer strategy: consultation analysis

Question 7

Under Person-centred care we are considering:

• Individual experience (by responding to Scotland Cancer Patient Experience Survey (SCPES); and by working with Third Sector and key partners on projects such as Care Opinion)
• Co-production of some actions with people affected by cancer
• Wider support for people living with and beyond cancer and their supporters (for example Single Point of Contact, Transforming Cancer Care, Prehabilitation)

Do you agree with these areas of focus?

There was a high level of support for the proposed areas of focus among respondents: 94% of respondents agreed with the areas of focus, while 6% did not agree. Respondents were also asked to provide any comments on their response, and the key themes raised in responses are covered below. There were two open-format questions on the areas of focus for person-centred care:

• 174 responses to the first question ("In your experience, what aims or actions would you like to see under any of these areas? Please focus your response on the person-centred care."): 100 from individuals and 74 from organisations.
• 110 responses to the second question ("Please explain your answer and provide any additional suggestions."): 58 from individuals and 52 from organisations.

Service, staff and third sector management

The most common theme identified within responses concerned the management of services, staff and the third sector, including charities. Regarding service management and associated policies, respondents highlighted the necessity for a centralised administration as well as a holistic approach in the delivery of services, including suggestions for co-production and co-design. Other issues raised were the integration of different services, investment in advanced methods, accessibility of services, the reduction of waiting times and the involvement of community pharmacies.

"It needs to be coordinated from one building so it is a one stop for patients. Having days and weeks between seeing different professionals makes the mental trauma worse." (Individual response)

Respondents also raised the importance of supporting workers in health and social care, with suggestions made including offering additional education and training to improve compassionate or person-centred care, as well as psychological support, including access to counselling. Other issues discussed were the establishment of a Clinical Nurse Specialist (CNS), the investment in workforce specialising on blood cancer and the formation of a network of care providers to support patients.

"A go to person for follow up care/concerns. It's never clear if I should be going to breast cancer clinic or GP with concerns. I've contacted one and been told to contact the other." (Individual response)

Responses addressing the involvement of the third sector recommended that the third sector and charities should coordinate with patients and health care settings to support the implementation of a person-centred care.

"Greater support for local Cancer Support Charities." (Individual response)

Information, communication and education

The second most popular theme encompassed information, communication and education. Responses under this theme mostly referred to the person-centred approach. Respondents felt that patient experiences should be heard. Along these lines, respondents raised the role of the Single Point of Contact, the importance of engaging with communities and stakeholders as well as listening to patients' feedback. In addition, age cohorts seemed to be important for a few respondents, who suggested that particular attention should be paid to the needs of either older or younger people respectively.

"Wider support for people with cancer is the most important aspect. It should be very practical based help e.g, access to someone who can do their shopping, cooking and cleaning. If you are older or on your own I simply have no idea how they cope." (Individual response)

Support

The theme of support was raised with reference to numerous aspects, such as mental health and psychological support for the patients or their families, financial support offered to carers or service providers and charities, better resources being made available and more broadly the necessity to facilitate support. Some respondents were interested in specific types of support, such as sexual health support for sexual health prostate cancer or support for pathology and radiology services.

"[…] Cancer and its treatment affect every person differently and take their toll, not just on people's physical health but their emotional wellbeing, finances, family, social and work life. […]" (Organisation response)

"What about supporting families? Mental support in top of medication, education and prevention???" (Individual response)

Diagnosis, care and aftercare

The fourth theme combined diagnosis with care and aftercare. Diagnosis was related to the importance of prevention and prehabilitation. Care and aftercare regarded issues such as rehabilitation, compassionate care and post-treatment care.

"need long term commitment to funding for aims mentioned in strategy-including prehabilitation/rehabilitation, single point of contact, improving cancer journey rather than constant short term funding [...]" (Individual response)

Broader concerns

Some respondents raised broader concerns, including references to the implications of the Covid-19 pandemic on the envisioned person-centred care.

"Sadly due to Covid a lot of the resources previously available to people weren't available but good to see them opening up again [...]" (Individual response)