Home Dialysis: Who Cares for the Carer? Roundtable Discussion

Carers are fast becoming the heart of a lot of NHS policy in moving care out of hospital and into the home. This is particularly pertinent in kidney care, where clinically suitable patients can dialyse at home, providing an increased quality of life and giving them more control over their own care. However, there is an implicit assumption in this move that their family members and loved ones will take on part of this extra work, creating a need to better understand the role that carers play in looking after patients. NHS Kidney Care led the field in this area publishing their first report in September 2011 – ‘Home dialysis: who cares for the carer?’ The report intended to further explore the carer’s role, and to share with healthcare professionals and other patients the realities of life for the family members and partners of those on home dialysis. Following the publication of this report NHS Kidney Care commissioned Ipsos to conduct ethnographic research to highlight the difficulties that carers face when caring for renal patients and to look for potential success stories to learn from.

NHS Kidney Care and Ipsos presented the results of this project on Carers Rights Day at a roundtable event in November 2012. The aim of the discussion was to bring together an invited group of carer and patient representatives, and healthcare professionals to discuss findings in order to create content for a mandate which NHS Kidney Care could take to the Department of Health.

It found that, with the emotional ties between carer and patient, sometimes carers agree to do what they think is best for their loved ones without fully understanding the implications that this choice will have on themselves and their own long-term health and wellbeing. There is a clear need for more information and support for carers, resulting in a full consideration of the options and how the carers would be affected. Services need to help carers fully understand and make informed decisions about what could be coming and the implication this will have on their current life.

Attendance at this launch event highlighted the sustained interest in the work NHS Kidney Care has done on recognising carers’ needs and understanding how to design services which will allow carers to be able and enabled to care for loved ones at home. This is of particular importance in light of The NHS Outcomes Framework 2013/14, which now includes ‘and the carer’ within patient experience.

Rachel

Rachel from Ipsos ECE on Vimeo.

Karen

Karen from Ipsos ECE on Vimeo.

Phil

Phil from Ipsos ECE on Vimeo.

Matthew

Matthew from Ipsos ECE on Vimeo.

Michael

Michael from Ipsos ECE on Vimeo.

• Home dialysis: who cares for the carer? (PDF)