Response 391949716

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Overall and type of document

1a. What are the most important aspects of the cancer journey you would like to see included in a long-term strategy?

Think about, for example, prevention, screening, diagnosis, treatment, support for people with or affected by cancer, other care.
Prevention
Screening
Support for terminally ill

1b. Are there particular groups of cancers which should be focused on over the next 3 or 10 years?

Examples of groups may include secondary cancers or less survivable cancers.
Lung Cancer
Cervical Cancer

1c . What do you think we should prioritise over the short-term?

Consider what needs addressed within the first 3 years.
Screening

2a. Do you agree with the proposal for a 10-year strategy?

Please select one item
Yes
No
2b. Please explain your answer and provide any additional suggestions.
Having provided at home care for my parent whilst they were terminal during an epidemic it’s essential that we improve cancer prevention, screening and support

Vision, aims and principles

3a. Do you agree with this vision?

Please select one item
Yes
No
3b. Please explain your answer and provide any additional suggestions.
Levels of support should not vary based on post code.

4a. Do you agree with these goals?

Please select one item
Yes
No
4b. Please explain your answer and provide any additional suggestions.
Every instance of terminal cancer causes a legacy within the family which can further impact the health service through the support of mental health etc

5a. Do you agree with these principles?

Please select one item
Yes
No
5b. Please explain your answer and provide any additional suggestions.
Collaboration is key. Frequently we had to chase information as Marie Curie support became main point of contact rather than GP when discharged from Consultant. As a family member it was extremely stressful having to fight to be heard and for someone to put my parents needs ahead of the buck passing

Scope and Framing

6a. Do you agree with these themes?

Please select one item
Yes
No
6b. Please explain your answer and provide any additional suggestions.
Person centred care is key. Cancer doesn’t occur in statistics. It occurs in people. People who have lives, dependents, loved ones.

7a. Do you agree with these areas of focus for person-centred care?

Please select one item
Yes
No
7b. In your experience, what aims or actions would you like to see under any of these areas?
Single point of contact needs to understand that each case is different and may not fit their tick box criteria
7c. Please explain your answer and provide any additional suggestions.
Reliance on charities like Marie Curie serves a purpose but not always what the family or individual need

8a. In your experience, what actions do you think would be most effective for helping to stop people getting cancer, and reducing inequalities in cancer incidence?

Please focus your response on the prevention of cancer and inequalities in cancer incidence.
Education from childhood onwards. Create a culture that focuses on health and well-being.

9a . Do you agree with these areas of focus for timely access to care?

Please select one item
Yes
No

10a. Do you agree with these areas of focus for high quality care?

Please select one item
Yes
No

11a. Do you agree with these areas of focus for safe and effective treatments?

Please select one item
Yes
No

12a. Do you agree with these areas of focus for quality of life and wellbeing?

Please select one item
Yes
No
12b. In your experience, what aims or actions would you like to see under any of these areas?
Palliative care - having had to call district nurses out to support with breakthrough care I found a huge variance in their knowledge of palliative care and the required medication which I do believe caused my parent unnecessary pain and distress as I was frequently talked in to them giving lower doses and being told they could come back out in 2 hrs even when this was in the middle of the night, knowing that this would have limited impact
12c. Please explain your answer and provide any additional suggestions.
Knowledge of palliative care within district nurses varies hugely

13a. Do you agree with these areas of focus for data, technology and measurement?

13c. Is there any technology that you would like to see introduced to improve access to cancer care?
Enhanced scanning to understand if cancer is progressing quickwr

Earlier Diagnosis Vision

15a. What would you like to see an Earlier Diagnosis Vision achieve?

Think ahead to the next 10 years, think big picture – what change(s) should we be aiming to influence when it comes to earlier cancer diagnosis? Consider access to care/cancer screening/primary care/diagnostics and awareness of cancer signs and symptoms.
Earlier screening for primary cancer types

15c. Should the Earlier Diagnosis Vision focus on specific cancer types?

The current programme focuses on lung, bowel and breast cancers that account for 45% of all cancers diagnosed in Scotland.
Prominent cancer types should be prioritised for biggest return on investment

15d. If you or a family member or friend have previous experience of a cancer diagnosis, where did the service work well and why was that? What could have improved the experience?

Please refer back to your personal experience to identify how services worked well and where improvements could be made.
Improvements - being supported by one consultant rather than being passed from one to another.
Communication being back up in letter as often life changing information is given verbally which can be forgotten due to the immense impact that a diagnosis can have.

15e. From your previous experience, where would you like to access care if you had concerns about cancer that would be different to what is available currently?

Please identify where you would like to access care differently to improve your experience.
Would like to apply for screening ahead of current NHS schedule

15f. What does good earlier cancer diagnosis look like for you?

Think about what a good outcome would be, for example more people being diagnosed when they can be cured of cancer, living well with cancer for longer etc.
Clear pathways of treatment.
Less need for invasive treatments.

Conclusion

17. What other comments would you like to make at this time?

Please provide any additional comments regarding the long or short-term ambitions for cancer care.
Consider the support of the individual outwith the NHS treatment. Leaving people to attend hospital during the pandemic on their own was in humane

About you

Are you responding as an individual or an organisation?

Please select one item
(Required)
Individual
Organisation