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Clearer communication, around the rationale for nurse-led follow-up in particular, might help alleviate the concerns some participants expressed about no longer being reviewed by a neurologist. Being confronted with disease progression prompted significant emotional reactions among some of our participants. PwMS are keen to see improvements in the availability of psychological support, which they recognised as an important deficit in available services.11 12 17 Participants described employing differing coping strategies during the transition phase. A chosen coping strategy may be helpful or unhelpful depending on the situation.43 Although denial and unrealistic optimism may initially help people to deal with the stress of their changing circumstances, in the long term, failure to acknowledge emotions may leave them unresolved.45 46 Emotions need to be expressed and processed over time in order to facilitate adjustment44 which may require social and professional support. Soundy et al28 described how people who had reached acceptance of their MS diagnosis and prognosis expressed hope through being positive, accessing support and taking each day as it comes. Our participants described utilising self-management strategies, and participation in self-management is known to promote good adjustment.44 Health professionals can capitalise on this interest in self-management by facilitating access to appropriate information and engagement in physical and social activity. The stages that carers may pass through in their acceptance of support have been described as rejecting, resisting, seeking and accepting support.46 Most carers in our study appeared to be in the first two stages and many seemed able to cope independently. The lack of previous discussion with professionals around their own well-being suggested that until carers are carrying out the physical tasks of caring, their own support needs can be easily overlooked, compounded by the fact that carers themselves may reject support. Further research that defines objective markers of the transition to SPMS would be extremely useful for clinicians and their patients. The current tendency not to Dactolisib concentration confirm SPMS until it is certain may make identifying patients at the transition stage for future research challenging. Observation of clinical encounters may be useful to confirm objectively what occurs when the transition is discussed and to identify areas for improvement. Conclusion Awareness that the transition to SPMS is occurring or has occurred, and subsequent emotional reactions and coping strategies, vary widely between pwMS and their carers. PwMS and carers want to know what SPMS means for them and what they could be doing to help themselves. If health professionals can provide these explanations, pwMS may feel empowered to self-manage while feeling confident that health professionals will form part of a supportive network for the future.