Leukaemia Care publish open letter to UK governments

Leukaemia Care have published an open letter to the Prime Minister, and First Ministers of Scotland, Wales, and Northern Ireland, urging them to provide more support for CLL patients on Watch and Wait

Leukaemia Care have published an open letter to the Prime Minister, and First Ministers of Scotland, Wales, and Northern Ireland, urging them to provide more support for CLL patients on Watch and Wait and consider their needs in healthcare planning.

Listen to us reading out the letter below:

Alternatively, you can read our letter online here.

What is ‘Watch and Wait’?

‘Watch and Wait’ or ‘active monitoring’ is the period that many patients encounter when they are diagnosed with CLL but don’t immediately start treatment. Around two thirds of CLL patients will not require treatment straight away and will instead be placed on Watch and Wait. They are monitored over the course of this period until they reach a point when treatment may be required. 

This is done because traditional treatments are very intensive and can cause greater issues for patients than the CLL. We know this is a treatment plan that is associated with good outcomes for patients.

What are the issues surrounding Watch and Wait?

Watch and Wait can be an uncertain and anxious time for patients as they don’t know when or even if they may ever need treatment. Half of patients on Watch and Wait express feeling more concerned or anxious since diagnosis, with 1 in 8 feeling constantly depressed or anxious.

Patient experience is often worsened by a lack of information and supportive care offered to patients whilst on Watch and Wait. Bad quality information about Watch and Wait has been shown to be worse for mental health than no information at all.

Additionally, patients tell us that Clinical Nurse Specialists (CNSs) provide invaluable help and support. But not all patients have access to a CNS, and those on watch and wait are among the least likely to be given access. It is vital that inequalities such as these are addressed.

What are Leukaemia Care’s recommendations?

The majority of recent and upcoming UK nations cancer plans and strategies have failed to mention or reference Watch and Wait issues. This is particularly concerning as there are approximately 13,000 people living in the UK with CLL on watch and wait.

Therefore, We are calling on all UK governments to ensure the following: 

  1.   Patients who are on active monitoring are adequately accounted for in Government and NHS planning for cancer care.
  2.   Timely signposting to resources from trusted sources to help patients better understand their diagnosis and Watch and Wait.
  3.   Improving doctor-patient communication to ensure patients are better informed and feel more involved in their care.  
  4.   There is a need for guidance for healthcare professionals on how to support clinical needs and aid patients to navigate some of the challenges involved with living with and coping with a chronic blood cancer diagnosis and Watch and Wait.
  5.   All chronic lymphocytic leukaemia (CLL) patients should have access to a named key-worker, normally a Clinical Nurse Specialist (CNS), who can support their clinical and holistic needs following diagnosis.
  6.   Charities such as Leukaemia Care and CLL Support provide invaluable support for patients online, over-the-phone, and in-person. Patients need to be made aware of the range of support available to them at an early stage in their CLL journey.

How can you support our Left to #WatchWaitWorry campaign?

You can send a letter to your MP, (or MSP, MS, or MLA for those in Scotland, Wales and Northern Ireland) online here. 

Looking for more information or have questions about our campaign?

For more information about our campaign or to get involved visit our campaign page here, alternatively, contact us at campaigns@leukaemiacare.org.uk

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