Standards of Care: Setting a new benchmark for leukaemia support

Leukaemia Care’s latest research found:

• Patients’ wider needs are often unmet beyond diagnosis and treatment.
• Access to key support services, like a Clinical Nurse Specialist (CNS), varies between leukaemia types.
• Emotional, psychological, and financial challenges frequently go unaddressed.

These disparities inspired our mission: to create a unifying framework of care so that all leukaemia patients can expect the same high standard of support.

This national framework was built with patients, nurses, and healthcare leaders — not just for them.
We carried out a three-stage process:

1. Research: Reviewing evidence on effective interventions such as care planning, health education, and empathetic nursing.
2. Working Groups: Bringing together patients and professionals to co-develop draft standards.
3. Consensus Meetings: Reaching agreement (minimum 75%) across clinicians, patients, and national cancer bodies.

The result? 19 Standards of Care — each one defining what consistent, equitable support should look like for everyone affected by leukaemia, MPNs, and MDS.

• Every patient should have a named specialist haematology nurse as their key worker.
• Support must include emotional, psychological, practical, and financial care — not just clinical treatment.
• Patients should receive clear, accessible information at diagnosis and throughout their journey.
• Services must offer ongoing, proactive contact, not just one-off interventions.
• Hospitals and commissioners should work with third-sector organisations like Leukaemia Care to deliver truly holistic care.

Overview statements: 

1. Practical, emotional, financial and other holistic care needs are as important to the wellbeing of leukaemia patients as physical health interventions. 
2. There is a need for a framework or document that sets out the care that all patients should receive. 

Communication & Information: 

1. All patients with leukaemia, MPNs, and MDS should be offered written information about their condition, at diagnosis and throughout their cancer journey, so they can refer back to it as needed. 
2. Written information provided should meet an approved quality standard (such as the Patient Information Forum (PIF) Tick). 
3. Any information shared with patients, their family, friends and/or carers must be tailored to and accessible the recipient, e.g. sensitive to their emotional state and in provided a format of their choosing, where possible.  
4. Patients should be able to access their test results if they request them in a timely fashion, offered support and for the results to be explained to them in a way that is accessible to the patient. 
5. Significant changes in care and support should be proactively and promptly communicated with the patient. 

Support: 

1. All patients with leukaemia, MDS, and MPNs should be given opportunities to discuss their future hopes and wishes with a trained professional, and have the principles of shared decision making adhered to at all times. 
2. There must be a clear process in place to refer patients to holistic support as soon as a need is identified.  
3. All patients with leukaemia, MPNs, and MDS should have a named specialist haematology nurse as their key worker.  
4. All patients with leukaemia, MPNs, and MDS should be able to access their assigned key worker in a variety of ways that is accessible to them. 
5. Patients with leukaemia, MPNs, and MDS should be informed, in writing and orally, who to contact and how if they have any questions or issues. 
6. Patients should be regularly and proactively reminded of and directed to organisations such as Leukaemia Care that can offer them information, advice, and support. This should be done from diagnosis.  
7. All patients should have their psychological needs assessed, ongoing from the point of diagnosis and regardless of their leukaemia type, and offered a referral to further for an appropriate level of psychological support. 
8. Support services offered by local services should be co-designed with those affected by leukaemia, MPNs, and MDS. 
9. Patients with leukaemia, MPNs, and MDS on a self-management pathway must have clear pathways to access specialist support, and must include proactive check ins with patients. 

The Clinic or Hospital Setup: 

1. The hospital team should include patient navigators, support workers, social workers and/or other staff who are specifically available in person to discuss a patient’s holistic needs.  
2. Hospitals, commissioners and/or trusts should collaborate with third sector organisations such as Leukaemia Care for advice, support and innovation in the services they provide for those affected by leukaemia, MPNs, and MDS. 
3. Hospitals or clinics should measure whether the patients’ goals for their care have been met using an effective patient reported outcome measure (PROM), rather than outputs or activities alone.