Under Improving quality of life and wellbeing, we are considering:
- Prehabilitation and rehabilitation
- Psychological support
- Patient pathways (including quality of care, waiting times, less survivable cancers)
- Palliative medicine, Best Supportive Care and End of Life care
- Support to family/carers
Do you agree with these areas of focus?
There was a high level of support for the proposed areas of focus among respondents: 99% of respondents agreed with the areas of focus, while 1% 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 improving quality of life and wellbeing:
- 159 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 quality of life and wellbeing."): 83 from individuals and 76 from organisations.
- 84 responses to the second question ("Please explain your answer and provide any additional suggestions."): 33 from individuals and 51 from organisations.
Management of care services
The most common theme across responses to this question was about the management and delivery of different care services. Respondents highlighted different pathways to achieve a better quality of life and wellbeing. Among others, they considered palliative care, the role of community pharmacies, conducting a Holistic Needs Assessment (HNA), and the interaction between health and social care.
"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" (Individual response)
The second most discussed theme regarded support. Respondents highlighted different kinds of support, such as mental health and wellbeing support, advice being given to patients as well as to health and care workforce, financial support to patients and to the health and care system, and additional types of support, such as clinical support, or support to families.
"It is clear many clinicians are keen to deliver prehabilitation, however lack the resource for the necessary steps such as screening, assessment and personalised signposting to prehab activities in the patient's community. The work done on prehab has been excellent, but without resource, many staff regard this as nice to have but unattainable. Specifically for more specialised patients and complex pathways." (Individual response)
Research and communication
The next most discussed theme encompassed research and communication. Responses addressing research-related topics included suggestions to listen to the experience of experts and patients, as well as facilitate access to evidence-based rehabilitation considering it helpful in managing side effects of treatment.
"More research on pain relief for end of life. There can be a lot of pain experienced by people with cancer and the side effects of pain relief medication for severe pain are not pleasant to say the least." (Individual response)
Other points regarded data accessibility or collection (e.g. on quality of life). Some responses also stressed the importance of better communication between professional bodies to achieve service integration.
"Accessible and understandable information available (for those who have cancer and those who support them, including professionals)." (Organisation response)
Prehabilitation and rehabilitation
The next most discussed theme included suggestions about prehabilitation and rehabilitation. Respondents stressed the importance of this aspect for the improving quality of life and wellbeing as well as quality of life outcomes. Specifically, they mentioned the necessity for promotion and assessment of prehabilitation activities. They also mentioned that access to rehabilitation and post-treatment support should be facilitated. Responses acknowledged that both prehabilitation and rehabilitation are under-resourced, while some further highlighted that these activities should be fairly delivered across the whole country.
"Prehabilitation to specifically meet the needs of older adults should be available. Rehabilitation is particularly important for the older adult as they are prone to functional decline at any point in the cancer journey. We must ensure they have timely access to services that deliver rehabilitation, in a setting suitable for them. This may be in the cancer hospital, at home, in day Hospital or other community settings for example vitality classes in the leisure sector. […]" (Organisation response)
"We would like to see extensive integration of these measures with treatment so that each patient has their unique combination of treatment and support for wellbeing. We particularly welcome the inclusion of prehabilitation and of post-treatment support that helps a patient in coming to terms with, and make the most of, successful cancer treatment." (Organisation response)
No further suggestions
Some respondents simply stated their agreement or disagreement without elaborating further.
"agree with the above" (Individual response)
"Nope, they are all more of the administration that keeps us paying for a huge cancer industry. Not everyone gets these services anyway. People die. What people want is to not die. Not get support to help them while they die." (Individual response)
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