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.
There were 243 responses to this question (149 were from individuals and 94 from organisations).
The most common theme identified related to the patients' journey prior to a confirmed cancer diagnosis. There was a strong focus on prevention whereby respondents called for increased education around healthier lifestyles (such as tackling smoking, alcohol use and obesity) as well as raising awareness for symptoms and signposting relevant cancer services where necessary.
Early diagnosis was also frequently discussed, and respondents felt that regular screening for at-risk populations, including for asymptomatic and secondary cancers, would be beneficial in achieving this. They also stated that accessing screening should be easier and suggested that research into innovative diagnostic technologies should be done.
"Prevention and early diagnosis offer the best outcomes for patients. Investment in these two areas will achieve the greatest impact for a given investment. […]" (Individual response)
Respondents also expressed that increasing the number of General Practitioners (GPs) and upskilling them would lead to swifter referrals and decrease the occurrence of late diagnoses. They suggested that community-based support within the pre-cancer journey, such as community pharmacies, would improve equity of access and should be considered.
"The initial diagnosis. Myself and others who I have spoken with don't feel that GPs are taking us seriously. If the GPs don't fob people off and deal with early intervention then it would negate the need for long term treatment due to late diagnosis." (Individual response)
Effective cancer care
The next most frequently discussed theme regarded effective cancer care once diagnosis has been confirmed. Respondents often called for more patient-centred care with personalisation of treatment plans and consideration of patients' wants and experiences. It was also mentioned that information about treatment options and risk of secondary cancer should be communicated more clearly to help patients feel more in control of their care.
"[…] So many people struggle to access treatment and support for various reasons such as means to do so, other responsibilities i.e. caring, work etc., knowledge of what's available, confidence to ask questions, understanding of diagnosis and options." (Individual response)
Respondents suggested that better understanding of inequalities in accessing care would lead to more equitable access to treatments and support. They felt that cancer patients should be provided with timely emotional, financial and palliative support with the option to access this within their local communities. Respondents also suggested increasing the number and skill levels of staff as well as encouraging research into innovative, evidence-based treatments especially for less survivable and secondary cancers.
"I think that after being diagnosed you are hit with so much information at the time you can't process it all. I had a mastectomy at 45 and felt that my mental health was completely ignored and it has taken me years to come to terms with it on my own" (Individual response)
Another theme identified within the responses related to patients' experiences and needs after their treatment has been concluded. There was an emphasis on rehabilitation and learning to live with cancer. Respondents frequently called for effective rehabilitation plans to support patients, including those with learning difficulties. They suggested that patient work arrangements post-treatment should be considered as well as any reconstructive surgery needs.
"A follow up plan that not only facilitates but promotes rehabilitation, and has easy and quick access to Speech and Language Therapy." (Individual response)
Many respondents wanted long-term support post-treatment for cancer patients suggesting regular follow-ups, funding to cover costs for treatment of returning diseases, financial support as well as support for bereaved families. Respondents felt that any improvements in long-term support should be based on listening to patient experiences.
"[…] Post cancer care, when treatment is finished, you are often waved off and told to get in touch if you have any concerns, better information on support services available." (Individual response)
Lessons learnt from the Covid-19 pandemic
The next most common theme was the need to reflect on the impacts of the Covid-19 pandemic. Respondents often discussed late diagnoses resulting from lower-risk groups being neglected during the pandemic and ineffective diagnoses over the phone. There were many calls to make use of genome sequencing techniques, as these were utilised during the Covid-19 pandemic, to enable earlier cancer diagnosis.
"Screening and diagnosis. Particularly of the under 50s - an age group severely neglected during the pandemic." (Individual response)
"Since the pandemic began, GPs who don't have access to video consultations have attempted to diagnose over the phone and regular check-ups are still on hold; this has drastically affected the rate at which cancers are caught early. […]" (Individual response)
Respondents also spoke about difficulties in accessing cancer care such as delays in obtaining GP and hospital appointments due to increased demand because of patients presenting later as a result of the pandemic. The need for a more effective alternative where in-person check-ups are not feasible was also commonly discussed. Respondents also welcomed out-of-hospital care units to improve accessibility.
Lastly, the theme of secondary cancer was discussed often by respondents, almost unanimously referring to secondary breast cancer within this theme. Respondents felt the new cancer strategy should raise awareness around the symptoms of secondary cancer as well as testing and treatment options. They suggested more frequent screening and enhanced diagnostic testing for those who have had cancer before.
"Regular routine screening is so important for early diagnosis of primary & secondary breast cancer. I found my lump myself which turned out to be cancerous, but many ladies I met only found theirs through routine scans. I am keen that I continue to get annual checks, ensuring should the cancer come back it will be identified early." (Individual response)
Respondents often expressed concerns over accessing clinical trials for patients with secondary cancer. They also felt that access to care and support for patients living with a metastatic disease should be improved.
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.
There were 215 responses to this question (138 were from individuals and 77 from organisations).
Specific cancer types
The majority of respondents provided specific examples of cancers that should be prioritised within their answers. Of those that included an example, lung cancer was the most commonly cited, followed by breast, blood, pancreatic and bowel cancers respectively.
The most frequently given reasons for the need to focus on breast and bowel cancers were to do with high prevalence rates and therefore their potential impact on a greater number of people. For lung and blood cancers respondents stated that high severity and low survivability were the reasons for prioritisation. Pancreatic cancer was often cited to be lesser known and harder to detect thus requiring a specific focus within the new cancer strategy.
Less survivable cancers
A very common theme identified within the responses was the need to focus on less survivable cancers. Respondents felt that cancers with high mortality rates required increased support in order for them to 'catch up' to the survival rates of other cancers.
"We would welcome a focus on the less survivable cancers. In addressing the survival deficit for these cancers there is much to gain in terms of improving cancer outcomes and addressing inequity. […]" (Organisation response)
"[…] There is obviously a tension between tackling high volume cancer and low survivability but given the progress that has been made with the high volume, it would be legitimate to invest in the big, less-survivable cancers, and to target the sorts of improvements we have seen in other tumour sites. […]" (Organisation response)
The next most common theme identified regarded respondents wanting secondary cancers to be prioritised. Respondents felt that there needed to be a greater focus on improving the experience and outcomes for those diagnosed with secondary cancers.
"Secondary cancers (more robust and regular testing of people with primaries will help to reduce the huge cost of someone's medical care when they develop a secondary which is often diagnosed at a late stage). And will of course help to save lives." (Individual response)
"The strategy should include a focus on an improvement in the experiences, treatment, care and outcomes for secondary breast cancer patients." (Individual response)
Different demographic groups
Another theme found within the responses was respondents wanting different demographic groups to be focused on, rather than particular types of cancer.
Within this theme children and young adults were frequently cited as the target age group to prioritise. Respondents also commented that those from low socio-economic backgrounds were subject to inequalities in accessing cancer care and they felt this needed to be addressed. There was also a call for cancers specifically affecting females to be prioritised.
"Teenagers' death from cancer rate is so high so anything to research and bring to market new medications. […]" (Individual response)
"Focus on cancers that would impact most on current social inequalities to reduce the gap between the least and most deprived." (Organisation response)
What do you think we should prioritise over the short-term?
Consider what needs addressed within the first 3 years.
There were 233 responses to this question (145 were from individuals and 88 from organisations).
Screening and diagnosis
The most common theme identified within this set of responses related to the screening and diagnosis of cancer. Respondents felt that these stages of the cancer journey needed to be timelier, more accurate, and have an increased capacity.
"[…] Diagnosing more cancers at an earlier stage (especially blood cancers) by investing in Early Cancer Diagnostic Centres, the oncology workforce, and diagnostic capacity. […]" (Organisation response)
"Improved access to screening - early signs of pain & discomfort should be more vigorously investigated as should high risk groups due to age, lifestyle and/or hereditary risk factors." (Individual response)
Respondents also suggested that screening should be encouraged for a younger age range. Concerns were also raised over the increases in late-stage diagnoses resulting from delays due to the Covid-19 pandemic and respondents wanted this to be considered within the new cancer strategy.
Issues and needs of the workforce
The second most common theme found regarded the workforce and where respondents felt improvements could be made. Recruiting more staff as well as increasing skill level through more training were frequently cited as areas to focus on within the new cancer strategy. Respondents also felt that there should be a more even distribution of specialist staff throughout the country.
"Staff currently feel stressed and overworked. Addressing this will allow improvements across the board. There needs to be expansion of the work force to reflect the increase in demand for SACT and radiotherapy. Allied health professionals also need to be rapidly increased. Additional training places need to be created at every level from undergraduate to specialty training and consideration should be given to bursaries etc to attract people into these professions. […]" (Individual response)
Respondents called for more radiographers and radiologists in particular and suggested that community pharmacies have the potential to play a more integral role in recognising cancer symptoms and referring patients than they currently do.
Speeding up the cancer pathway
Another significant theme identified regarded the need to streamline cancer pathways and reduce the time taken between all elements from initial suspicion of cancer through to rehabilitation. Respondents felt a reduction in waiting times, specifically those for GP appointments, was required.
"Giving speedy access to treatment and reducing waiting times. Having been diagnosed with womb cancer last year I waited 4 months for my hysterectomy and then a further period before starting chemo." (Individual response)
The need to clear backlogs resulting from the Covid-19 pandemic was also commonly cited as a priority for respondents.
"The obvious. Waiting times. The backlog which has built up with staff shortages, financial cutbacks and of course COVID. That is vital. An enormous effort should be put in place to clear the backlog of patients and tests and surgeries. If that can be achieved then the whole system would be able to be run smoothly and efficiently. […]" (Individual response)
The fourth most common theme that arose from the responses was the importance of prevention. This included the need for increased education and awareness surrounding symptoms and self-checking, with respondents specifically asking for this to be targeted towards school-aged children, hard to reach groups, and less engaged groups.
"Greater emphasis on advertising/awareness of symptoms for all cancers especially the common ones that people may ignore. This should be aimed at all age groups. Followed by training for GPs on symptoms." (Individual response)
Respondents also felt that the new cancer strategy should aim to reduce health inequalities more generally and promote healthier lifestyles, with examples commonly given being better diet, more exercise and reduced alcohol consumption.
"[…] A revised focus on preventative services is urgently needed. A key focus should be on tackling the inequalities, which lead to health inequality and disease progression. […]" (Organisation response)
"Prevention strategies need to be included in short- and long-term planning. Significant endeavours are currently being undertaken within the prehabilitation period but support for increasing physical activity and healthy diets need to start as early as possible. […]" (Organisation response)
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