Cancer strategy: consultation analysis

Question 15

Question 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.

There were 206 responses to this question (124 were from individuals and 82 from organisations).

Screening and diagnostic capabilities

The most common theme within the responses related to screening and diagnostic capabilities. Respondents called for expansion of screening services to improve access to timely diagnoses. They felt that screening should be offered to younger age groups as well as encouraged in more at-risk and older populations. Many also suggested that more regular general health check-ups for the whole population that involve testing for cancer would benefit the Earlier Diagnosis Vision.

"5-yearly healthy life check-ups offered through Primary Care with a blood test to check for any illness (to detect cancer as soon as possible). This will be supplemented with screening programmes as appropriate. Investigations for all suspicious symptoms (to rule out or diagnose cancer)." (Organisation response)

"Screening starting earlier, potential issues like calcification in breasts monitored more closely. People with headaches or consistent aches screened more often. Make it easier to get screened or medically checked." (Individual response)

Respondents also stated that funding should be directed towards innovative diagnostic technologies, commonly citing genetic and genomic testing as areas of interest. They felt that more consideration of methods for timely detection of asymptomatic cancers was needed within the Earlier Diagnosis Vision.

Awareness and education

The theme of awareness and education was the next most frequently cited amongst respondents. They felt that campaigns educating the public about symptoms would lead to greater public awareness and encourage self-referral. Respondents called for education to start at a young age and suggested that a school-setting may be most suitable for this.

"Continued education of population for signs and symptoms of cancer to encourage self referral." (Individual response)

A common example given of types of symptoms that should be targeted within campaigns was for non-specific symptoms, such as unexplained weight loss, as respondents felt these symptoms often lead to late presentation of patients to cancer services. Respondents also felt that GPs and other staff required further training on identifying indistinct symptoms so that cancer patients are not dismissed or misdiagnosed.

"Raise GP awareness. Got to get the referral first. More awareness of cancer symptoms but also the symptoms are not always obvious." (Individual response)

"[…] It is really essential that more education of both GPs and public are better equipped on the awareness of signs. Four of the GPs at my practice missed the signs of my initial breast cancer." (Individual response)

Accessibility of services and support

Lastly, another frequently discussed theme within the responses for this question was the accessibility of cancer services and support. Respondents felt that for earlier diagnosis to take place, access to diagnostic services needed to be timelier and more equitable. It was often suggested that provisions within local communities, such as community pharmacies, would help with accessibility problems.

"More local screening instead of travelling in to Edinburgh." (Individual response)

Respondents also felt that the Earlier Diagnosis Vision should consider continued support, including psychological, financial and post-diagnosis, considering that any increase in number of diagnoses would lead to a greater number of cancer patients requiring subsequent services and support.

Question 15B

Should the Earlier Diagnosis Vision set itself a numerical target?

For example, 75% of all cancers diagnosed at an earlier stage. Please provide any suggested target you have.

There were 171 responses to this question (103 were from individuals and 68 from organisations). In general, most respondents agreed that a numerical target should be set. Respondents typically expressed general support while providing additional qualifications to their support or details around what a numerical target would look like. Fewer than 5% respondents provided a specific quantitative target, and a slightly larger proportion of respondents explicitly responded "No".

Measurability of targets

The most common theme identified regarded the measurability of targets set for early diagnosis. Respondents felt that any targets set by the Scottish Government would need to relate to decreased mortality rates as well as decreases in late-stage diagnoses as indicators of how successful the Earlier Diagnosis Vision has been.

"Increase in earlier diagnosis may not impact on mortality. It would be more appropriate to set mortality reduction targets." (Organisation response)

"Difficult to set an absolute target - more important to reduce the number of late-stage diagnoses." (Organisation response)

Many respondents also highlighted the fact that various types of cancer (examples given including brain and blood cancers) either cannot be staged or are not subject to the same staging as other types. So, they felt that identifying alternative ways of measuring earlier diagnosis progress for these cancers would be important in order for these cancers not to be left behind.

"[…] However, many cancers that are common in young people, such as blood cancers, are not currently staged, and so they will not contribute to this commitment. To resolve this, the 10-year cancer strategy should consider proxy measures for cancers that can't be staged. […]" (Organisation response)

Targets specific to cancer types

The second most common theme identified within the set of responses was the need for targets to be specific to different types of cancer as respondents felt it would be unrealistic to set the same target for all cancers.

"Is it realistic to have the same target for different cancers, some of which may be difficult to diagnose at an early stage? It would make more sense to have a target for each type of cancer. In addition the target should be based on improvement to the current rates of early diagnosis. Ideally the target would be based on what is realistic, plus a little more to give direction to research and improvements in service delivery." (Individual response)

Respondents suggested that a generic target would not be comparable across cancer types due to differences in staging, with blood cancer frequently provided as an example. Less survivable cancers were also proposed as types of cancer that should be associated with a specific target as it was suggested this would have the most meaningful impact.

"Numerical targets for cancer often overlook blood cancer. Some blood cancers cannot be staged, and so cannot easily be factored into national general targets. Where numerical targets exist, they must acknowledge the differences in data for cancer, and data specific to blood cancer." (Organisation response)

Numerical targets are unhelpful

The next most common theme identified was that numerical targets can be unhelpful. Respondents frequently felt that arbitrarily set numerical targets would not benefit the Earlier Diagnosis Vision, with many suggesting that numerical targets can divert attention away from the broader picture and instead expressing the idea that general 'improvement' was enough to work towards.

"Precise numerical targets are a distraction. Continuous improvement and learning are the key aspects." (Individual response)

Many respondents were concerned that a numerical target would not prove useful in real-life as well as being difficult to set in the first place, whilst others expressed concern over how service providers would be viewed if they failed to meet strict, numerical targets.

"We felt it would be difficult to set a target, justify that target, and then potentially be judged as failure if that aspirational target not achieved. However, there should be targets which may not be numerical." (Organisation response)

Ambition vs realism when setting targets

Lastly, the need for targets to be ambitious was another theme identified within responses. Of those that agreed with a numerical target being set, the majority expressed that the value of 75% (given in the question example) was too low and needed to be more ambitious. The term 'stretching' was cited often with some respondents suggesting that any percentage below 100% leaves a certain percentage of cancers not diagnosed at an early stage.

"I would have the target higher. That's 25% that will have their cancer missed. Strive for a higher number." (Organisation response)

Within the theme of ambition many respondents also proposed that incremental targets would be beneficial to strive for continuous improvement as the strategy progresses.

"Most certainly. It should also be increased at certain stages within the 10 years as through doing something and learning the percentage should get higher." (Individual response)

Many respondents expressed concerns over keeping targets realistic with feasibility appearing as a sub-theme. Respondents indicated that they want the right balance to be found between ambition and realism when targets are set.

"Numerical targets can be very powerful, but they have to be realistic." (Individual response)

Question 15C

Should the earlier cancer diagnosis vision focus on specific cancer types?

The current programme focusses on lung, bowel and breast cancers that account for 45% of all cancers diagnosed in Scotland.

There were 187 responses to this question (115 were from individuals and 72 from organisations). In general, most respondents agreed that the earlier cancer diagnosis vision should focus on specific cancer types. Around 20% of respondents explicitly said "No" in their responses, while the remaining respondents mentioned specific types of cancer or described the criteria they would use (with varying levels of detail) in deciding which cancer types the vision should focus on.

Focusing on specific types of cancer

The most highlighted theme in responses was the view that the Earlier Cancer Diagnosis Vision should focus on specific types of cancer. While some respondents did not specify which types, most of them mentioned different types of cancer that can be summarised into three sub-themes. The first one encompassed less survivable types of cancer^[8] as well as dangerous, fast-spreading cancers and cancers with vague symptoms.

"Should be: Lung, bowel, stomach (gastric), oesophagus, brain, Pancreatic as if these not diagnosed early then very poor outcome" (Individual response)

"It should be widened to include screening for other cancers where individuals have increased risk factors" (Individual response)

The second sub-theme included types that are not in the scope of the Less Survivable Cancer Taskforce, such as cancer of blood, breast, skin, head, thyroid, and bladder. For example, a respondent suggested that blood cancer diagnosis is not as developed as the rest.

"This vision must focus on blood cancer. As referenced above, blood cancer diagnoses are already significantly lagging behind other cancers. This must be brought up to the national standard and improved upon further. […]" (Organisation response)

The third sub-theme focused on cancers related to a patient's sex such as uterus, ovary, cervical, and prostate cancer.

"What about ovarian cancer or prostate cancer - all easily treatable with early detection. These might make up 45% of cancer but there is another 55% of other cancers being ignored?" (Individual response)

Not placing focus on specific types

A large number of respondents believed that the Earlier Cancer Diagnosis Vision should not be targeted at specific types. In many cases, respondents appeared to be concerned that focusing on specific cancers would lead to omitting other types (e.g. less common types, such as womb cancer or those that have late-stage diagnoses). For instance, responses raised that focusing on a specific group of patients would be harmful for the rest; instead all types of cancer should be seen important.

"No include all so health boards have to treat them all not just focus on the ones with targets and leave the others on the waiting list" (Individual response)

Time considerations

Some respondents raised the importance of time, mainly in two ways: a) the timing of the diagnosis, especially in terms of the early or late stage of the disease when this takes place, and b) the age cohort of patients. Early diagnosis was stressed a lot by respondents and was seen as the result of an efficient prevention strategy. On the other hand, cancers usually identified at a later stage were considered to be more dangerous, and hence respondents suggested that they should be at the centre of attention.

"The very poor prognosis tumours will see life changing/enhancing/lengthening improvements for a large number of patients if an effective early detection strategy can be found. Even if the numbers are small the outlook is so bleak that this could still be an effective strategy." (Individual response)

"No. I think we should aim to find ways to diagnose all cancers as early as possible, especially those which are often diagnosed very late and which therefore have very poor outcomes." (Individual response)

A smaller number of respondents raised the importance of the patient's age and the role this can play in the timing of the diagnosis.

"Older adults in general should be included in this group are they are more likely to present late and in an emergency setting." (Organisation response)

Frequency of cancer types

Finally, another prevalent theme underlined the need to focus on cancer types based on how often they are recorded. Interestingly, many respondents suggested that the Earlier Diagnosis Vision should be targeted at the most common types of cancer, without however completely omitting those types that are less common. On the contrary, some respondents mentioned that more emphasis should be placed on rare cancer types.

"Common cancers will have the most impact but should not be solely focussed on to the detriment of less common cancers including those which may present with vague symptoms" (Organisation response)

"Less well known cancers should be prioritised as some of these have outcomes that have not changed in the last 10 years." (Individual response)

Question 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.

There were 151 responses to this question (112 were from individuals and 39 from organisations).

Coordination and communication

One of the two themes most commonly discussed by respondents was communication and coordination. Most respondents with lived experience felt that communication from staff to patients and coordination between cancer services had been poor.

"[…] It often felt chaotic, instructions were unclear and I spent considerable effort trying to connect dots between oncology, surgery and my GP on different aspects of my treatment. This really knocked my confidence." (Individual response)

Respondents frequently cited reasons for this being not knowing who to contact, having to chase up information themselves, not having third party support organisations signposted, and having life-changing information conveyed by phone or email. Respondents also felt that coordination between services was poor leading to confusion and delays throughout their cancer journey.

Supporting patients

The other main theme identified regarded the support provided to patients. A little over half of respondents felt that the support they received had been of a low standard. They cited a lack of availability and accessibility, a lack of psychological support, and a lack of follow-ups and aftercare which led to feelings of 'abandonment' post-treatment.

"From operation to treatments were good. There should be more information on after care as you go from being treated daily to nothing once you are discharged and is very daunting." (Individual response)

"[…] Regular follow-up was reassuring and appreciated. End of treatment was scary and psychological support at this time would have been welcomed. […]" (Individual response)

Those that felt support had been good shared good practice examples such as having regular follow-ups which provided reassurance, feeling generally 'looked after' and having access to good quality palliative care.

Timings

The next most common theme related to timings throughout the cancer journey. Just over half of respondents felt that there had been delays in aspects of their cancer pathway frequently commenting that long wait times between testing and results led to worry and anxiety.

"Long waiting times for colonoscopy/investigations after GP referral for classic bowel cancer symptoms. Once diagnosed service worked well, clinic and surgeon worked well together and family were involved at all stages. Needs to be speedier investigations for people who have symptoms." (Organisation response)

Other respondents expressed satisfaction with the speed and efficiency of the process. They commonly referred to the process post-diagnosis as being particularly efficient.

"Worked well as my mother was able to get a quick appointment with her GP who then was supported by the system to expedite her case to the central cancer care unit at the [hospital name deleted to retain anonymity]. The speed of diagnosis and then treatment plan meant the mental anguish was reduced." (Individual response)

Experiences with staff

Another theme identified regarded the staff that patients encountered on their cancer journey. The majority of respondents cited their experience with staff as being positive, with many expressing gratitude for the level of care and compassion they received throughout their cancer journey.

"I am currently undergoing treatment for cancer and I would say that the most positive experiences have been from the care, support and attention from nursing staff across departments. This is mainly from ward based nurses, treatment nurses and auxiliary nurses. […]" (Individual response)

However, some respondents expressed that their experiences with staff were negative, that their access to specialists was limited or that they felt staff appeared to be 'overstretched'.

"[…] The consultant who marked me up for the 5th week of radiotherapy left me in tears - no eye contact / told me not to get the mark up wet. I explained I worked full time and would need to shower. Afterwards a nurse took me aside to offer to help and gave me protective tape. […]" (Individual response)

Diagnosis

Finally, diagnosis was identified as a theme within the responses. A large majority of respondents expressed dissatisfaction with their diagnosis experience and this commonly related to the accuracy and timeliness of diagnosis, and the knock-on effects for their treatment options.

"The level of care provided was excellent, however, the diagnosis was made too late which resulted in a rush through toxic treatments the clinical team knew would be unlikely to work. […]" (Individual response)

Respondents often referred to experiences of being misdiagnosed as a result of their GP not being sufficiently aware of cancer symptoms and being dismissed or diagnosed late because their GP failed to take them seriously.

"My cancer diagnosis came from myself knowing my own body, and being aware of problems, almost unknown by GP." (Individual response)

Question 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 your experience.

There were 127 responses to this question (91 were from individuals and 36 from organisations).

Where care should be based

The main theme identified within the responses was the specific location that respondents felt would be the best base for accessing cancer care. Most respondents felt that local, community-based care would be most beneficial for cancer patients.

"It would be great to be able to get some access to cancer services at local medical centres." (Individual response)

Following on from community-based care, respondents most frequently suggested that hospital-based care and GP-based care respectively would be the best options.

"For my cancer, the hospital is definitely where I wanted and needed to be during surgery and chemotherapy and radiotherapy. My surgeon was excellent, as were the oncologists and the radiologists. I had confidence in them." (Individual response)

"Personally from a GP that cares and knows me." (Individual response)

Accessibility of cancer care

The second most common theme identified regarded issues surrounding accessibility. Timely access to cancer care was most commonly cited as a problem that needs addressing, with respondents expressing frustration over delays in the process.

"Primary access should be through the GP, and this means that rapid access to GP consultation should be available. The cancer screening programmes should also be able to provide rapid access to diagnostics when a screening test is positive." (Organisation response)

Distance was the next most frequently mentioned limiting factor associated with accessing cancer care. Many respondents also felt that the difficulties they faced with securing doctors and/or hospital appointments meant that accessing cancer care was not a straightforward process.

"Access to the full range of cancer services in the local health board area not hundreds of miles away." (Individual response)

"Access to speak to a real, trained person to discuss concerns and determine whether they need to be followed up and if so, with what urgency. Difficulties in making GP appointments can be off-putting in making an appointment if there is less certainty around severity. […]" (Individual response)

Expertise and dedicated care

Lastly, the need for expertise and dedicated care was another theme identified. Respondents suggested that staff should be specialised, highly trained, and knowledgeable so as to provide the best quality of cancer care possible.

"I would prefer to access care at a dedicated clinic, this way the staff are trained to a high degree on the specific subject and needs of the patients and more resources, such as counsellors, could be available if the patient is extremely worried or is diagnosed with cancer. GPs are obviously the best first point of contact, but as they are trained to recognise many illnesses but in less detail it is more likely they will miss something important." (Individual response)

Many respondents also suggested that all aspects of cancer care should be accessed within one, dedicated cancer clinic.

"Ideally, a One-Stop Cancer Centre where a speedy diagnosis and treatment can be carried out without referral to a GP." (Individual response)

"A separate unit for diagnostic testing, support, diagnosis and clinical care. Everything cancer care under one roof." (Individual response)

Question 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.

There were 168 responses to this question (114 were from individuals and 54 from organisations).

Prevention, early diagnosis and efficiency

The most common theme discussed by the respondents was about prevention, timely diagnosis and treatment efficiency. Respondents highlighted the need for detecting cancer at early stages. Early diagnosis was seen as the result of a better prevention strategy and was further linked to better treatment efficiency within responses.

"More people being diagnosed when they can be cured" (Individual response)

"A good outcome for me would be to see as a clinician far fewer patients with stage III or IV breast cancer. Not hearing from friends that they were dismissed by GPs and not investigated for non-specific symptoms" (Individual response)

Quality of life

A large number of respondents discussed the benefits of an earlier diagnosis with reference to the impact this can have on people's quality of life. In particular, respondents associated earlier diagnosis with longer life expectancy, higher survival rates and a better quality of life.

"Cancer being a treatable condition, treatments to be curative for all early cancers. When cancer is terminal, better management of side effects to allow best quality of life" (Individual response)

"Fear-free early diagnosis, treatment that takes account of the circumstances of the individual, not just the beliefs of the professionals, and which allows for a sensible compromise between life expectancy and quality of life. QoL must be measured in terms relevant to the individual patient, not by arbitrary standards…" (Individual response)

Management of health care sector

The next most discussed theme was about the management of health care sector. Among others, respondents discussed issues regarding the accessibility of services, reduction of waiting times and greater access of patients to GPs.

"Shorter waiting lists/time." (Individual response)

"The majority of cancers detected before patients even experience symptoms. A proactive NHS in Scotland that provides regular blood screening to detect cancers at the earliest possible stage when curative options or managing the cancer similar to a long-term condition is possible." (Individual response)

Advanced techniques, and better information and communication

Another theme coming through people's responses encompassed innovative methods to detect and cure cancer alongside a discussion about efficient information and communication between experts and patients.

Responses focused on advanced techniques included suggestions that early diagnosis would lead to a set of new, more efficient, or less harmful methods.

"Earlier diagnosis means the greater possibility of a cure or less invasive treatment" (Individual response)

"Improved survival, less treatment related impact on quality of life, state of the art treatment based on evidence, the latest technology and a highly skilled workforce." (Organisation response)

Responses addressing communication and information included suggestions on better educating experts as well as patients. Responses mentioned that cancer-related topics should be discussed in public settings, such as schools or in the media. Furthermore, respondents raised that, as a result of an efficient diagnosis, patients should be also well-informed.

"An honest but compassionate conversation, discussing risks, options, supports and what's important to me. Taking some of the fear away, living positively where a diagnosis is made. Where a patient has every opportunity to live a full life without cancer or with cancer." (Individual response)

Socio-economic cohorts

The final and the least common theme addressed the benefits of good earlier cancer diagnosis on specific socio-economic cohorts of people, such as young people and vulnerable groups. Respondents acknowledged that an earlier diagnosis could lead to a care plan that can be adapted to each patient's individual needs.

"Young people should also feel more empowered to visit primary care and other health professionals when they experience symptoms. In turn, healthcare professionals, young people as well as the public should be better equipped to recognise the first signs of cancer in young people to increase the speed of diagnosis." (Organisation response)