Suggested answers

[Start with your own experience here. For example, how leukaemia has affected you or someone close to you, and why you want it treated as a priority in this strategy.]

Therefore, I support Leukaemia UK’s call for the Welsh Government to:

• Make sure the strategy represents all cancers, including rare and less common cancers like leukaemia, on an equal footing with common cancers.
• Provide clear national leadership and accountability for cancer, with designated leadership for rare and less common cancers.
• Set measurable goals and metrics that work for every cancer type and value both survival and quality of life.
• Use measures across the whole pathway, such as emergency diagnosis rates, not just staging.Strengthen cancer data collection and publish it openly for all cancers.

[Start with your own experience here. For example, whether your leukaemia was found early or late, how many times you visited your GP, or whether it was diagnosed in an emergency.]

Therefore, I support Leukaemia UK’s call for the Welsh Government to:

• Make sure everyone with symptoms of leukaemia gets a full blood count within the recommended time.
• Add automatic prompts and safety netting into health records so GPs act quickly.
• Run an awareness campaign so the public and GPs can spot leukaemia, including people who have had cancer before.
• Audit and expand the staff and labs that carry out and process full blood count testing.
• Convene an expert forum to agree key touchpoints in the health system for full blood count testing for those at risk (e.g. full blood counts in lung health checks and in annual checks for people over 60 and people with a learning disability).
• Make sure rapid diagnosis centres offer full blood counts.
• Develop a National Optimal Pathway for leukaemia, as already exists for some other blood cancers taking into account the Best Practice Timed Pathway Leukaemia UK has developed in England.

[Start with your own experience here. For example, whether you had to travel for treatment such as a transplant or CAR T therapy, and what that meant for you and your family.]

Therefore, I support Leukaemia UK’s call for the Welsh Government to:

• Protect, maintain and expand bone marrow transplant services in Wales.
• Expand CAR T therapy beds and make them available to leukaemia patients, not only lymphoma patients.
• Guarantee fast, equal access to genomic testing for everyone who would benefit, including leukaemia patients.
• Build the specialist workforce and training needed to deliver these treatments.

[Start with your own experience here. For example, whether you had a named nurse, whether fertility or mental health were discussed, and what support you needed after treatment ended.]

Therefore, I support Leukaemia UK’s call for the Welsh Government to:

• Make sure fertility preservation is discussed before treatment, with clear information and funded services where needed.
• Ensure every leukaemia patient has a dedicated nurse specialist or key worker from diagnosis onwards.
• Give every patient regular personalised needs assessments to identify supportive care needs followed by a personalised care plan covering physical, mental, social, financial and work needs.
• Design a personalised needs assessment that fit blood cancer and haematology care.
• Improve access to good psychological support.
• Collect and publish data on quality of life, personalised care and patient experience.

[Start with your own experience here. For example, whether a clinical trial or a newer treatment was available to you, and what difference it made or would have made.] 

Therefore, I support Leukaemia UK’s call for the Welsh Government to: 

• Set clear plans to bring in new treatments quickly and fairly across the whole of Wales. 
• Increase the number of people taking part in clinical trials, and run trials closer to where people live. 
• Support academic and charity funded trials alongside commercial ones. 
• Prioritise research into better and less harmful treatments for leukaemia, including childhood leukaemia. 
• Set research priorities that include blood cancers and other rare and less common cancers. 

[Start with your own experience here. For example, waiting for blood test or genomic results, or travelling a long way to reach specialist services.] 

Therefore, I support Leukaemia UK’s call for the Welsh Government to: 

• Check and expand the staff and labs for full blood counts testing, pathology and genomic testing. 
• Include full blood counts testing in diagnostic hubs and rapid diagnosis centres. 
• Make sure genomic test results are ready before treatment needs to start. 
• Protect Cardiff’s transplant accreditation and expand CAR T therapy to leukaemia patients. 
• Reduce geographic inequality by expanding and spreading specialist centres across Wales. 
• Expand care closer to home for people who live far from a centre. 
• Build the specialist workforce for modern diagnostics, genomics and treatments. 

[Start with your own experience here. For example, whether your information followed you between services, or whether you had to repeat your story to different teams.] 

Therefore, I support Leukaemia UK’s call for the Welsh Government to: 

• Expand performance measures to cover the whole pathway, including a 28 day diagnosis standard, and include cancers that cannot be staged like leukaemia. 
• Publish detailed data, including leukaemia by its main types, in line with the rest of the UK. 
• Link data across the whole pathway – from primary to secondary care. 
• Improve data on patient experience, quality of life and support, and move towards a single patient record. 
• Publish data by age, ethnicity, area and health board to find and tackle inequalities. 
• Produce a cancer data strategy developed together with clinicians, patients and charities. 

[Start with your own experience here. For example, whether where you live affected your access to treatment, or how far you had to travel compared with others.] 

Therefore, I support Leukaemia UK’s call for the Welsh Government to: 

• Take a systematic approach to finding and reducing inequalities by area, personal characteristics and cancer type. 
• Reduce the postcode lottery by making specialist treatments like CAR T therapy and transplants available more widely across Wales. 
• Explicitly recognise rare and less common cancers, including leukaemia, as a group at risk of poorer outcomes. 
• Publish data by personal characteristics and area to identify inequalities. 
• Prioritise a national leukaemia audit so variation in care can be tackled. 

[Start with your own experience here. For example, what would tell you the strategy had made a real difference to people like you.] 

Therefore, I support Leukaemia UK’s call for the Welsh Government to: 

• Expand waiting time standards to include a 28 day faster diagnosis standard and to cover the whole pathway. 
• Include early diagnosis measures for cancers that cannot be staged, using a stand in measure. 
• Commit to improving survival, including doubling survival for acute myeloid leukaemia from 15% to 30%, and track progress. 
• Measure and improve patient experience as a core sign of success. 
• Set clear actions, timelines and responsibilities, with regular reporting and independent oversight that includes rare and less common cancers. 

[Start with any final thoughts in your own words, for example the single change that would matter most to you or your family.] 

Therefore, I support Leukaemia UK’s call for the Welsh Government to: 

• Put in place clear, transparent accountability and strong leadership for the strategy and for cancer services. 
• Back the strategy with enough funding and resource to deliver its ambitions. 
• Ensure that charities and lived experience are involved in implementation.