We cannot be part of the solution if we are not part of the plan

4th November 2020 // Laura Kerby

Today, I wrote again to the Secretary of State for Health and Social Care about the importance of integrating patient groups into communication planning. We know from the calls we receive on the Myeloma Infoline and the emails sent in via the Ask the Nurse email service how incomplete, unclear or late information has a serious impact on the lives and wellbeing of myeloma patients.

During the initial lockdown and subsequent emergence, the government committed to providing more nuanced advice, with the message that it would liaise in a meaningful way with charities and patient organisations to provide clear guidance for patients.

The reality is that patients are receiving inconsistent and fragmented advice, issued in fragments and with very little warning. As a result, we are being contacted by patients and families who are struggling with how to navigate the situation and interpret the information that they are being given by government. This impacts all aspects of patients’ lives – from how they live, work, feed themselves and their families, to whether their children go to school or not.

Whilst we support an evidence-based approach to local and regional lockdowns systems, the short notice given to the public of these decisions seriously disadvantages patients who require more time to put preparations in place ahead of the general public. For those who have experienced disruption to their cancer treatment (over 40% of the myeloma patient population) there is continued anxiety about what a second lockdown means for their ongoing treatment and care.

We want to support the Government and the NHS with their messaging and do our part to ensure that patients feel confident that the complexities of their situation have been recognised and they should continue to feel confident in using the NHS. To enable that to happen, however, it is essential for patient charities like Myeloma UK to receive informative and timely communications from Government. We cannot address patients’ fears and offer reassurance when we are given no detail with which to do that.

We cannot be part of the solution if we are not part of the plan.

To help address this in part, we have urged the government to publish the Oxford COVID-19 risk prediction model as soon as possible. This would go some way to enable patients, family and friends to better understand their risk, and would help patient organisations understand and how evidence is being used to shape policy, enabling us to better support you.

Going forward, it essential that the UK Government ensures that patient groups are included in communications planning. Myeloma UK is ready to help. We are fully aware of the physical, mental and emotional impact of any changes to government guidance on our patients and their households, and we want to use our established communications channels to cut through speculation and provide the reassurance patients need.