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Doctor showing patient clipboard (both are in masks).

A new initiative from the NIHR BRC Haematology and Stem Cells was launched in spring 2021, bringing together people with Myelodyspastic Syndrome (MDS) for a series of workshops entitled ‘What matters most’, resulting in a wealth of helpful feedback and guidance to improve patient care. 

MDS is a group of malignant blood disorders in which the bone marrow fails to produce health blood cells. All types of blood cells can be affected, causing a range of symptoms.  

Headed up by the MRC WIMM's Dr Noemi Roy and Dr Catriona Gilmour-Hamilton (based at Oxford University Hospitals (OUH) NHS Foundation Trust's Haematology department), the ‘What Matters Most’ method was designed as a way of bringing people together to talk about their shared experience of illness, and agree a list of priorities for research and service / resource development.

As a result of the COVID pandemic, face to face meetings were impossible, but the workshops could be transferred to an online medium, with the help of Milly Sinclair, a professional facilitating and training provider.  

Fourteen participants of varying age and experience joined the MDS workshop. Most were patients being treated at OUH, but some were from other parts of the UK. The online environment had the major benefit of allowing people with severe fatigue or mobility problems to take part in a way that they would not have pre-COVID.

Discussions were very fruitful, generating a huge amount of material; at the end of the first workshop, there were 56 ‘questions’ and comments under the themes of: Prognosis; End of life; Treatment; Supportive Care; Medical Staff Training; Diagnosis; Communication; Organisations and Resource Sharing. The number of delegates allowed everyone to have a say within a tight schedule. 

Between sessions, the questions were reviewed and refined, before being shared with the group for comment in advance of the second meeting. The second meeting was dedicated to discussion, further grouping of the questions under umbrella headings, and then voting on the issues that matter most. 

MRC WIMM's Professor Paresh Vyas and Dr Onima Chowdhury, as well as Dr Alex Sternberg and Kirsty Crozier (all members of the Oxford Centre for Haematology) joined the workshop for the final half hour to hear the results of the workshops and discuss with the group. It was agreed that the outputs would be shared at the next meeting of the National Cancer Research Network specialist MDS subgroup, with some of the group invited to attend the meeting and present the patients’ priorities. 

Take home messages 

  • Living well with MDS is what matters most to patients: good supportive care; equality of access to expert advice and treatment; treating the person not the blood test results; improved management of fatigue.  
  • Improving communications about MDS would improve patient experience: explaining the diagnosis and its complexities to patients and significant others; improved communications between and within health care institutions; helping people to feel better prepared for what they might face in the future. This includes: prediction of individual outcomes; better understanding of how MDS will cause individual symptoms; and information about what to expect at the end of life.  
  • People with MDS would welcome alternatives to stem cell transplants as curative therapy. They feel that decision making about stem cell transplant should be better supported with evidence and improved shared-decision making.  
  • In addition to research questions, the workshop generated outputs that we can create relatively quickly, in partnership with colleagues and the national support group, MDS UK. These include resources: to facilitate sharing of stories from patients in similar situations; resources to explain MDS and other issues around diagnosis and prognosis; resources about end of life; materials to share and better explain MDS research.  

Next steps 

A number of significant initiatives emerged after the MDS workshop. The outcomes were presented to a national panel of MDS experts, and the feedback is being integrated into policy documents, patient pathways, and prognosis communications by nurses. The Oxford team are working with MDS to promote these resources and develop patient stories for other people to read or listen to. Following the success of this first workshop, plans are underway to repeat the process with other blood cancer groups in Oxford.   

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