Title – A dedicated cancer strategy that addresses leukaemia and other blood cancers

Description – The Darzi review highlighted that diagnosis, treatment, and care for patients with cancer in England are lagging behind other countries. For leukaemia, far too many people are diagnosed in an emergency setting.

Diagnosis through an emergency presentation stands at 37% for people with leukaemia compared to 21% for all cancer diagnoses, and this is linked to worse survival and patient outcomes compared to being diagnosed via a GP route.

This is becoming more prevalent among certain types of leukaemia, such as acute myeloid leukaemia (AML), which is one of the deadliest cancers. Five-year survival of acute myeloid leukaemia is just 22%. Shockingly, far too many people with AML are diagnosed through an emergency presentation. Between 2013 and 2020, the number of people being diagnosed with AML in emergency setting in England increased by 10%, while the number diagnosed by their GP has reduced by more than half.

A national cancer plan is critical to drive meaningful improvements in cancer outcomes. Evidence shows that consistency in cancer policy positively correlates with improvements in patient outcomes, including increased survival rates. If we are to improve outcomes, particularly for the deadliest cancers such as AML, a national approach through a dedicated cancer strategy is essential. This strategy should include a target to double the 5-year survival rate for AML to 44%.

Tags – Long term conditions, Diagnosis

Would you say this idea is quick to do? Or is it a longer-term change? – 1 – Quick to do, that is in the next year or so

Title – Clinical audits for all cancer sites including leukaemia and other blood cancers

Description – Cancer clinical audits help to improve cancer care and ensure both value for money and quality of service for all cancer patients, by identifying what works well and where improvements could be made, increasing the understanding of the pathways to cancer diagnosis. Cancer clinical audits can address health inequalities by identifying and reducing unwarranted variation in cancer diagnosis, treatment, and care outcomes. They allow for sharing of existing good practices, strengthening cancer intelligence and provide tailored data feedback to support learning and quality improvement – increasing the overall quality of service provision across NHS cancer services.

The National Lung Cancer Audit began collecting data nationally in 2005, and since then lung cancer has seen a series of national improvement initiatives that all collectively have brought significant improvements in lung cancer early diagnosis and survival. To date, there is only one national clinical audit on blood cancers – for the non-Hodgkin lymphoma. It is essential that clinical audits are conducted across all cancer types, including leukaemia and other blood cancers, to ensure they benefit from improvements similar to those achieved through the National Lung Cancer Audit.

Tags – Caring for patients, Diagnosis, Treatment, Long term conditions

Would you say this idea is quick to do? Or is it a longer-term change? 2 In the middle, that is in the next 2-5 year

Title – Better access to full blood counts

Description – A simple and inexpensive full blood count is all that is needed to indicate or rule out a diagnosis of leukaemia. NICE NG12 ‘Suspected Cancer: recognition and referral guidelines‘ advise GPs to organise an urgent full blood count (within 48 hours) for anyone presenting with any leukaemia symptoms.

However, only a third of patients with leukaemia had received an urgent full blood count within 48 hours of presenting with symptoms. Alarmingly, 45% of leukaemia patients report visiting their GP more than once about health problems caused by their cancer before being diagnosed, with 27% of patients making three or more visits to their GP before receiving a full blood count. These missed opportunities for diagnosis contribute to inefficiencies in healthcare delivery: on average each GP appointment costs the NHS £46, while a full blood count costs only £7.98. Ensuring referral for a full blood count during the first GP visit will not only improve the outcomes and treatment options of the patient but also serve to improve the efficiency of the health service and free up much needed GP appointments. The NICE guidelines should clearly recommend that GPs should offer a full blood count within 48 hours for any patient presenting with leukaemia symptoms.

Tags – Diagnosis

Would you say this idea is quick to do? Or is it a longer-term change? – 1 Quick to do, that is in the next year or so

Title – Increased blood testing capacity for faster full blood counts

Description – A simple and inexpensive full blood count is all that is needed to indicate or rule out a diagnosis of leukaemia. NICE guidelines advise GPs to organise an urgent full blood count (within 48 hours) for anyone presenting with any leukaemia symptoms.

Alarmingly, 45% of leukaemia patients report visiting their GP more than once about health problems caused by their cancer before being diagnosed, with 27% of patients making three or more visits to their GP before receiving a full blood count.

A Savanta poll of 1,000 UK GPs on behalf of Leukaemia UK found that 92% could identify the need for a full blood count when a patient presents with the top four symptoms of leukaemia. However, 30% of GPs reported barriers to conducting these tests, with the most common being a lack of capacity within phlebotomy services. This shortage prevents GPs from sending more symptomatic patients for a timely full blood count, highlighting the need for increased capacity and investment in NHS blood services.

The economic argument is clear: on average, each GP appointment costs the NHS £46, while a full blood count costs only £7.98 . Increasing phlebotomy capacity could reduce the number of GP visits required before diagnosis, free up GP appointments, and lead to long-term cost savings for the NHS. Since 37% of leukaemia cases are diagnosed through emergency presentation, increased phlebotomy capacity will not only save more lives but also has the potential to avoid costly visits to A&E departments by self-presenting patients.

Tags – Diagnosis

Would you say this idea is quick to do? Or is it a longer-term change? 2 In the middle, that is in the next 2-5 year

Title – Publication of better and more consistent health data

Description – There is a need for the publication of better and more consistent health data to improve the quality of diagnosis, treatment, and care of leukaemia. There are gaps and inconsistencies in the way that leukaemia data is reported in England, including a lack of data by leukaemia type. This is a key barrier in understanding the issues and developing targeted strategies to improve survival and quality of life for those affected by the disease.

Health data on leukaemia is vital to better understand the disease as a health condition, but also to monitor where improvements have been made or highlight where improvements are needed. Currently, data for leukaemia such as incidence, mortality and survival, routes to diagnosis, treatments and cancer waiting times are generally inconsistently reported, if at all, and often without sufficient granularity – particularly, with regard to different types of leukaemia. Additionally, data reporting on leukaemia differs between the devolved nations, and England.

To improve the outcomes for those diagnosed with leukaemia, including the shockingly low 5-year survival rate of acute myeloid leukaemia (22%, one of the lowest of all cancer types), the NHS must publish better, more consistent data, with the granularity needed to be able to understand the quality of care and patient and clinical outcomes.

Tags – Management & Organisation, other

Would you say this idea is quick to do? Or is it a longer-term change? 1 Quick to do, that is in the next year or so

Title – Holistic Need Assessments for all cancer patients, including leukaemia and other blood cancers

Description – A Holistic Needs Assessment (HNA) is a simple questionnaire that is completed by a person affected by cancer. It allows patients to highlight the issues that they feel are, or are likely to be, most important to them. A HNA ensures that people’s physical, practical, emotional, spiritual, and social needs are met in a timely and appropriate way, and that resources are aligned with need. A HNA guides the development of a care and support plan by a nurse or key worker. This should be undertaken at different stages in the cancer patient’s pathway, particularly at diagnosis and following treatment.

In 2017, data showed HNAs were used by 77% of NHS Trusts, with an estimated 31% of patients having had a HNA. Aside from these data, little has been published on whether HNAs have been carried out and how many leukaemia patients have completed them. Shockingly, data from Leukaemia UK has found that only 9% of people with leukaemia had been offered a HNA to identify their supportive care needs and inform the development of a care and support plan.

Given the complexity of leukaemia and other blood cancers a HNA at point of diagnosis and throughout their treatment and recovery are needed to ensure that all physical and psychological needs are identified, addressed, and monitored.

Tags – Long term conditions, Caring for patients, Aftercare & recovery

Would you say this idea is quick to do? Or is it a longer-term change? 1 Quick to do, that is in the next year or so

Title – Better access to clinical trials for rare and less common cancers

Description – Leukaemia patients are often dependent on new treatments to survive the disease as surgery is not an option for them, unlike patients with solid cancers. Clinical trials provide the vital evidence base needed for new treatment approaches and thereby have the potential for improving the survival rates of those diagnosed with leukaemia and other deadly cancers.

Progress needs to be made in delivering high-quality clinical trials to test promising new treatments for blood cancers, including leukaemia. Since the COVID-19 pandemic, there has been a reduction in the number of clinical trials taking place in the UK and therefore a reduced number of patients participating in new trials. Almost half of Cancer Patient Experience Survey respondents with leukaemia said that they would have liked someone to have discussed with them whether there were any cancer research opportunities they could take part in – such as clinical trials – but this did not happen.

There are great disparities in patients access to trial, depending on where patients live – with access best for those who live near a large teaching hospital. To address these disparities, we need to work towards decentralising clinical trials.

In order to make clinical trials more accessible to all patients, the recommendations from Lord O’Shaughnessy’s 2023 review need to be implemented. This will help to streamline the clinical trail process, increase patient participation and address current inequalities in access to trials.

Tags – Treatment, Other

Would you say this idea is quick to do? Or is it a longer-term change? 2 In the middle, that is in the next 2-5 year