DKMS group for patients and their families

We know that the care and medical treatments on offer for patients with blood cancer or blood disorders in the UK are not good enough. We know this from what we have been told by patients and family members over the years and the facts and figures we see in reports.

In order to collect these stories and experiences, DKMS has set up the DKMS Patient and Family Strategy and Improvement Group, a group for patients and family members to join. Meetings take place once a quarter. The meetings give patients and family members the opportunity to talk about their experiences with both the health service and DKMS. We hope that by hearing these stories we can:

• improve our internal processes, and
• work with other charities and stakeholders to challenge the NHS and government to improve the care and treatment of blood cancer and blood disorder patients. There are issues with diagnosis, with many patients having to go to their GP multiple times before being referred and too many patients being diagnosed in Accident and Emergency (A&E).

Patients' experiences

There are problems finding stem cell donors for patients from black, Asian and other minority ethnic backgrounds. This group of patients only has a 37% chance of finding the best possible stem cell donor match compared to 72% for northern European backgrounds.

Patients with sickle cell anaemia are being not believed, not listened to, and not prioritised for care or treatment. The care of sickle cell patients varies wildly depending on which healthcare practitioners are on shift or where in the country they are being treated according to the Sickle Cell Society.

These are probably just the tip of the iceberg and don’t account for the general challenges of staffing, resourcing and the covid backlog the NHS is currently facing.

We only know all these things because patients and family members have shared their experiences. They have told their stories and explained where the problems lie in the systems. Once charities and policymakers know the problems they can start to suggest solutions and improve the care of patients with blood cancers and blood disorders.

Join the group

If you would like to get involved with this work or would just like to chat about your experience of blood cancer or disorders with a member of staff, please get in touch by emailing info@dkms.org.uk.